Volume I Issue i

The Brain and Beyond...

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Penn Bioethics Journal

Vol. I, Issue 1

Spring 2005

A Note On Methods:

This article about the ethics of hope and false hope

among patients waiting for heart transplants at the

University of Virginia (UVA) hospital is based on the

author’s experiences as a biomedical ethics intern during

the Fall 2004 semester. The author observed the

interactions between patients and various health care

professionals (e.g. physicians, nurses, social workers) and

these observations form the basis of the analysis in this

article. While no formal interviews were conducted, the

author has also incorporated conversations with

professionals at the UVA hospital into this article’s

conclusions. All names in this paper have been changed

in order to protect confidentiality; the substance of any

cases cited nevertheless remains intact.

Defining and Describing Hope:

Hope is not merely an emotion, but also an emotional

attitude. An emotional attitude can be understood as a

way of ordering the world with respect to one’s own values.

From this perspective, emotion is not just a feeling but

also a construction of a worldview. Just as one’s values

may change over time, emotional attitudes such as hope

may change over time. Regardless of the changes that

hope undergoes, it consists of at least four basic

components: 1) desires; 2) a belief that what is hoped for

accords with one’s values; 3) the notion that what is hoped

for is actually attainable; 4) and actions designed to

encourage and sustain hope and achieve its desired end

(Simpson, 2004, 428-432).

Imagination and uncertainty are also tied to hope.

The hopeful individual must be able to conceive of a

world that is different from the current one but, by hoping

for the imagined change, is open to disappointment due

to the fact that future events are as yet unknown. The

imagination in hope is tied to reality; one cannot realistically

hope for unrealistic outcomes. The imaginative process

and, more generally, hope itself are often collaborative

processes by which people imagine alternative situations

together, sharing and shaping ideas. Individuals may

imagine best-case scenarios and worst-case scenarios alike.

“Opportunities to speak with others with one’s condition

or illness” constitute one way in which people imagine

and hope collaboratively (Simpson, 2004, 432-438). Joyce

Willig, the first successful liver transplant recipient in the

state of Connecticut, points out this collaborative

dimension when she says “I try to give them [those waiting

for transplants] hope and promise, to draw them into my

miracle, to show them that there can be a world beyond

pain and fear” (Saft, 1992, New York Times, pg A1).

Expressions of collaborative imagination and hopefulness

were on full display at a support group meeting for those

who had received or were awaiting heart and lung

transplants at the UVA hospital. The patients at the

meeting vigorously encouraged one another to hold on,

gave narrative accounts of health and sickness, traded

advice on medical issues as well as matters of personal

and spiritual importance. The net effect was that all who

attended were able to draw inspiration from one another.

While collaboration seems beneficial in this case, it can

bring up issues that complicate traditional notions of

individual autonomy in the healthcare provider-patient

relationship.

Hope and Autonomy in the Context of Heart

Transplantation

Author: Kaveh Ardalan, University of Virginia

Faculty Sponsor: Margaret E. Mohrmann, M.D., Ph.D.

Abstract

This article describes and problematizes the

relationship between hope and autonomy. The

author’s conversations with health care professionals

and observations of patient-professional interactions

throughout the course of a Fall 2004 clinical bioethics

internship at the University of Virginia hospital provide

the basis for the analysis and conclusions drawn. The

author argues that the clinical experience of hope is

not morally neutral. Specifically, experiences of hope

and exercises of autonomy are often closely linked

and in tension with one another. At the very least,

false hopes should not be encouraged. However,

even realistic hopes have ethically murky implications

for autonomy. The negotiation of hope and

autonomy should be considered a central issue in

patient-professional relationships.

Kaveh Ardalan is a Senior at the University of Virginia

and is majoring in Human Biology.

Email: [email protected]

Margaret E. Mohrmann, M.D., Ph.D. is the faculty sponsor

for this submission. She is the Harrison Medical Teaching

Associate Professor of Pediatrics, an Associate Profes-

sor of Religious Studies, and an Associate Professor of

Medical Education at the University of Virginia.

Address: Program of Humanities in Medicine, PO Box

800761, University of Virginia, Charlottesville, VA, 22908



Vol. I, Issue 1

Spring 2005

Hope and Autonomy in the Context of Heart Transplantation

Hope, False Hope, and Autonomy:

The following section is less concerned with offering

concrete recommendations than with trying to get a sense

of the ways in which hope can be ethically problematic in

the first place. The nature of these problems is such that

clear, concise routes of action cannot be given and a full

account of possible responses to the ethical murkiness

of hope would be beyond the scope of this work. The

present goal is to shape a ‘moral space’ within which further

ethical inquiry can proceed (Walker, 1993).

Healthcare providers often worry about maintaining

a patient’s hope. For example, many doctors disdain “truth

dumping”, a name given to disclosures of information

that are complete, quick, and often follow stressful events

such as surgery. Some doctors prefer that information

be communicated in stages so that both the patient and

the healthcare provider are spared excessive agony. Such

negotiations about the rate at which professionals should

disclose predictions about a patient’s future reflect anxiety

over the balance between accurately communicating a

prognosis while supporting hope (Christakis, 1999, 109).

These anxieties often surface in metaphorical or

euphemistic language. For example, Richard Cunningham,

a social worker at UVA hospital, once asked the attending

physician Dr. Benway when he would “drop the bomb”

on a patient—the “bomb” apparently referred to the

demoralizing news that the patient needed to have a

Ventricular Assist Device (VAD) installed in order to

continue living and waiting for a heart transplant.

However, when healthcare providers worry about a

patient’s hopes and grow too protective, false hopes may

instead be outright encouraged as a way of guarding the

patient or the provider (Simpson, 2004, 445-446). False

hopes may consist of those hopes that are not realistically

attainable (Simpson, 2004, 435). There are clear reasons

to be concerned about false hope. Such unrealistic

expectations undermine commitments to truth-telling in

medicine and patient autonomy, both of which are based

on the notion of respect for persons. The relationship

between hope and autonomy merits further attention.

Autonomy springs from an individual’s liberty and

agency and autonomous action consists of those actions

that are intentional, performed with a sense of

understanding, and executed without the undue influence

of outside controlling influences (Beauchamp and

Childress, 2001, 58-59). Beauchamp and Childress express

skepticism over whether full autonomy is ever actually

possible in our non-ideal world. However, they claim

that some substantial degree of autonomy should underpin

ethical interactions between healthcare providers and

patients. Given these ethical guidelines and the fact that

hope often functions as a way of limiting and organizing

courses of action in accord with one’s own values, false

hope may constitute a violation of individual autonomy.

To the extent that hopes direct an individual’s actions,

hopes should be rooted in the truth so that individuals

assess and enact life plans that are in keeping with crucial

realities.

False hope may provide a relatively clear case in which

autonomy is limited by controlling influences. However,

more realistic hopes may also limit autonomy in ethically

pertinent ways. As discussed earlier, hope is often a

collaborative endeavor. Healthcare providers, with their

specialized knowledge and authority to estimate and deliver

prognoses, are certainly a part of the negotiations that

typify the construction and continuous reassessment of

patients’ hopes. Physicians, nurses, and others may exert

varying degrees of influence over a patient’s hopes. Since

one of hope’s functions as an emotional attitude is to

limit and order the world, it follows that healthcare

providers shape the framework of hope within which

patients exercise their autonomy.

Autonomy is predicated on agency, not necessarily

on an unlimited variety of options. The options that an

individual considers are limited by circumstances and

possibilities as well as by the values and norms that the

individual adopts. Hope is potentially ethically problematic

because healthcare providers may partially dictate some

of a patient’s decisions by unduly influencing the terms

of decision-making from the start of medical care. The

ethical issue at stake is whether or not the influence of

physicians and other professionals is within the bounds

of acceptable negotiations vis-à-vis hope or whether a

line has been breached at some point, impairing the ability

of the patient to seek out courses of action that accord

with her values irrespective of the healthcare provider’s

values. Hope seems to limit patient autonomy, but the

degree to which this is ethically justified remains unclear.

Healthcare providers’ own hopes may actually limit

patient autonomy to some extent as well. The effects of

physicians’ hopes on patient autonomy often arise in the

context of end-of-life decision-making. For example, Dr.

Benway oftentimes seemed to have a rather optimistic—

by some accounts triumphalist—outlook on his patients’

futures. Because he usually did not consider death as an

option, his patients did not typically have an opportunity

to initiate an early, honest discussion of the terms under

which treatments would be discontinued. For example,

one patient who was waiting for a heart transplant suddenly

suffered a stroke that left him paralyzed on one side and

medically ineligible for transplant surgery. Now the patient

was unable to verbalize his wishes and the patient’s father

stepped in as the surrogate decision-maker, but the father’s

proposals often did not seem to make sense. For example,

the father demanded withdrawal of care because he

claimed his son would not want to stay alive if it meant

being paralyzed; however, the fact that the son was fully

conscious and that his degree of paralysis was not great



Vol. I, Issue 1

Spring 2005

Hope and Autonomy in the Context of Heart Transplantation

enough to be considered grounds for a declaration of

medical futility cast doubt on the reasonableness of the

father’s claims. Eventually a second stroke occurred that

did result in a situation that could be deemed medically

futile in regard to saving the patient’s life and the patient’s

treatment was withdrawn. However, the interim time

between the first stroke and patient’s death found Dr.

Benway and the other members of the team in a position

that lacked clarity regarding the patient’s own wishes. Dr.

Benway’s high hopes for the patient, whose chances of

successfully living until transplantation were not good from

a medical standpoint, precluded an open discussion of

end-of-life decisions and presumed the succession of one

medical intervention after another until futility was so

clearly demonstrated that no other option but the

withdrawal of treatment was appropriate. In effect, the

patient did not have a full array of possible courses of

actions presented and his wishes may not have been

known or ultimately respected. Usually ethicists fear that

doctors have grown enamored with their own

technological prowess and treat their patients too

aggressively due to a sense of medical virtuosity. The

irony in this situation is that Dr. Benway’s hopefulness

and focus on the humanity and worth of the patient may

have actually inhibited a full respect for the patient’s

autonomy.

In closing, hope is an ethically problematic domain

of the patient-provider relationship. On one hand, the

experience of hope is a central and necessary element of

the experience of sickness, healing, and wellness. On the

other hand, the hopes of the patient and health care

providers may generate subtle and ethically murky effects

on the autonomy of patients who are especially vulnerable.

At the very least, the encouragement of false hopes should

be avoided. However, the situation is complicated by the

interplay and negotiation that occurs between a patient’s

hopes and a healthcare provider’s hopes, with both

individuals engaging in collaborative imagination. The

line at the end of one’s hopes and the beginning of

another’s autonomy is among the central contestable issues

at stake in the patient-provider relationship.

References:1. Beauchamp, T. F. and Childress, J. F. (2001). Principles of

Biomedical Ethics, 5th ed. New York, NY: Oxford University Press.2. Christakis, N. A. (1999). Death Foretold: Prophecy and Prognosis

in Medical Care. Chicago, IL: University of Chicago Press.3. Saft, M. (1992, March 15). Transplant Recipient Preaches Hope.

The New York Times, pg. A1.4. Simpson, C. (2004). When Hope Makes Us Vulnerable: A

Discussion of Patient—Healthcare Provider Interactions in theContext of Hope. Bioethics, 18:5, 428-447.

5. Walker, M. U. (1993). Keeping Moral Spaces Open: New Imagesof Ethics Consulting. Hastings Center Report, 23, no. 2, 33-40.




Vol. I, Issue 1

Spring 2005

Imagine if there were a pill that could replace sleep.

It is hard to say if such a drug would be seen as a panacea

by millions of chronically sleep-deprived Americans, or

viewed with caution by a public wary of neurocognitive

enhancers such as Ritalin and Prozac. This question may

soon be answered as a drug called modafinil is on the

verge of becoming the next pharmaceutical sensation.

Modafinil, marketed in America as Provigil by the firm

Cephalon, causes a sensation of increased alertness and

wakefulness. On modafinil, subjects in studies have

demonstrated the ability to stay awake for periods of up

to 64 hours with little or no decline in their level of

cognitive performance (Baranski et. al., 1998). Perhaps

the most counterintuitive aspect of modafinil is that it

causes very little sleep rebound. Use of amphetamines

and other traditional stimulants causes the user to need to

“make up” for lost sleep. This occurs at a drastically

lower level with modafinil (Legarde et. al., 1995).

Modafinil also differentiates itself from amphetamines

because use does not result in a “buzz” followed by a

crash in mood and energy. Additionally, it avoids inducing

tolerance or dependence (Bastuji and Jouvet, 1988).

Modafinil has been shown to be a cognitive enhancer.

The drug improves the ability of non-sleep deprived

subjects on tests of basic cognitive skills, possibly by

suppressing impulsive reactions (Turner et. al. 2003).

Such a drug seems too good to be true, and it well

may be. While modafinil has very few side effects (nausea,

anxiety, and headache are the most common), there are

some known problems with its use. For instance, the

drug significantly lowers the effectiveness of the birth

control pill, making it untenable for millions of women in

America. Any long-term ramifications that modafinil might

have, particularly in regard to its ability to suppress the

need for sleep, are unknown at this point, as is the exact

mechanism of modafinil’s functioning.

In the 1980’s the French firm Lafon derived modafinil

from an antidepressant. Professor Michael Jouvet,

director of the laboratory that developed modafinil, has

called the drug “a great French discovery” and remarked

that not only has he taken it to increase his own

productivity, but has seen it help students studying for

their baccalaureate exams (Dorozynski, 1989). In 1998

the FDA approved Modafinil in the U.S. to treat narcolepsy

and in 2004 expanded its approval to include shift work

sleep disorder and sleep apnea/hypopnea syndrome. This

increased the number of Americans with access to Provigil

from 250,000 to over 20 million (National Center on

Sleep Disorders Research, 2003). Usage of the drug is

expected to rise as the FDA has approved the manufacture

of modafinil by generic brands which can sell modafinil

at lower prices. Obviously, in a country as over-worked

and under-rested as the U.S., there is the potential for a

booming modafinil black market. Cephalon already

reports that 90% of the prescriptions written for modafinil

are for off-label use, and this number will, in all likelihood,

rise as awareness of the drug and its potential benefits

increases (O’Connor, 2004).

In informed conversations about modafinil, people

are always astonished to learn that there are no apparent

side-effects to this drug. They insist that there must be a

catch, and more than half decide that there is little chance

that there are no side-effects, instead opting to believe

that disastrous consequences will be discovered down the

road. There is a deep-rooted understanding in our culture

that supernaturally enhanced ability does not come without

a price. Modafinil seems to offer many benefits with

minimal physical cost, but the hidden cost of modafinil’s

Molly Cahill is a Sophomore at the University of Pennsyl-

vania and is majoring in Biological Basis of Behavior.


Rita Balice-Gordon, Ph.D. is the faculty sponsor for this

submission. She is an Associate Professor of the Depart-

ment of Neuroscience at the University of Pennsylvania.

The Ethical Consequences of Modafinil Use

Author: Molly Cahill, University Of Pennsylvania

Faculty Sponsor: Rita Balice-Gordon, Ph.D.

Abstract

Modafinil is a stimulant that is beginning to

receive attention in the United States because it

lacks the negative physical side-effects of traditional

stimulants. While these side-effects were an

impediment to widespread use of stimulants such

as amphetamines, there is no such barrier to

widespread use of modafinil, and a country as

chronically sleep-deprived as the United States could

be extremely receptive to this drug. The possibility

of widespread use of a neurocognitive enhancer

such as modafinil raises many ethical issues. For

instance, sleep-deprivation is a serious problem in

the United States but a drug that appears to be a

near-perfect treatment for sleep-deprivation may

compromise personal autonomy. Also, as is the case

with all neurocognitive enhancers, modafinil raises

issues surrounding the United States’ cultural

concept of pharmacological Calvinism, according to

which drugs should only be used to treat or cure

illness and disease. Modafinil highlights conflicts

between cultural values concerning effort, success,

and the role of pharmaceuticals in the United States

that will have to be resolved for the drug to assume

a role in society.



Vol. I, Issue 1

Spring 2005


conferring superhuman powers could lie in unanticipated

ethical side effects. Although discussion surrounding the

public policy issues that neurocognitive enhancers like

modafinil raise is interesting, the more difficult issues that

sleep-preventing drugs such as modafinil raise concern

what has been called “personhood and intangible values”

(Farah et. al., 2004). These issues will mainly be faced by

ordinary people in the course of daily life. For example,

in a culture where sleep deprivation is a “serious public

health problem” (National Center on Sleep Disorders

Research, 2003) what effect will a drug that ameliorates

the negative consequences of sleep deprivation have on

personal autonomy? Modafinil also highlights conflicts

between cultural values concerning success and effort that

will have to be resolved for modafinil to assume a role in

society.

What is fascinating scientifically about modafinil is its

antagonistic effect on sleepiness. Almost because we don’t

fully understand what makes it so necessary, sleep is

regarded as an elemental bodily function. To have

discovered a drug that allows sleeplessness with such

minimal negative side effects is quite astonishing. What is

fascinating ethically about modafinil is its power. The key

to limitless productivity, energy, focus, and just plain feeling

good every single day can now be found in 100-200 mg

capsules of modafinil. The question is, how much of

modafinil’s power will Americans be able to control and

to what extent will modafinil have control over us?

As part of a backlash against the more paternalistic

medicine of previous generation, the concept of personal

autonomy has grown in stature in recent decades. The

individual has been endowed with more right to choose

her own course of medical action. In order to have

autonomy one must have the liberty to choose and the

agency to make that choice come about. Autonomous

choosers make choices with understanding and without

the influence of controlling outside forces (Beauchamp,

2001). The choice to use modafinil is made autonomously

when the chooser sees modafinil as a road to self-

improvement that is compatible with her personal value

system. This autonomy can be compromised by coercion,

or “free choice under pressure” (Kramer, 1993) in the

workplace or classroom. Because of the increase in

productivity and energy that modafinil allows, if usage

grows in the workplace employees could feel compelled

to take modafinil in order to remain competitive. In this

scenario, the cost of modafinil could be prohibitive to

some workers, and this could reinforce or even enlarge

the gap between the affluent and the working classes as

those who can afford modafinil are better able to succeed

in their jobs. This situation could also occur in schools as

students who use modafinil appear brighter than those

who do not, an inequity ever more likely as modafinil

could be an approved treatment for ADHD as soon as

2006. This would put pressure on employees, students,

and parents to favorably consider the use of modafinil

even if their personal value systems are opposed to its

use.

An extension of the free choice under pressure

scenario that could occur if off-label use of modafinil

spreads is the concept of cultural addiction. Many

Americans have lifestyles that demand the sacrifice of

sleep. With modafinil, they may feel that their choice

comes down to either struggling groggily through each

day, or taking a pill that will enable them to feel awake.

Faced with this choice, it may be difficult for many people

to make a decision about using modafinil as a

neurocognitive enhancer that is based on their personal

values. If modafinil comes to be seen as the only avenue

to success or a tolerable life, under the free-choice-under-

pressure scenario, the autonomy of those using it would

be compromised, and they could be seen as dependent

on the drug. Modafinil obviously has the potential and

power to compromise personal autonomy. It is up to

each individual to examine modafinil critically in light of

his personal value system, cognizant of outside forces

that may make him want to take the drug in spite of

personal ethical objections to it.

The decision whether or not to use modafinil rests

heavily on the question of personal values, because this

drug highlights two perpetually clashing yet both deeply

ingrained American values. On one hand, Americans value

success and making the most of oneself. On the other,

Americans value hard work and the dignity it confers.

Many professional athletes face this struggle of values

when deciding whether or not to use performance

enhancing drugs. Sports ethics has condemned steroid

use because it undermines the value placed on personal

effort. However, professional athletes are under great

pressure to achieve from coaches and fans. For those

who choose to use performance enhancing drugs, the

end goal of success is more important than any personal

reward derived from working hard to achieve that success.

This is analogous to the situation created by modafinil,

because Americans are under large amounts of pressure

from bosses or teachers to produce, as well as from their

families to be better at fulfilling familial roles. Modafinil

could make it possible for people to be better employees,

family members, friends, etc. in the end, but perhaps at

the cost of the meaningfulness of the work one does to

reach these ends. This is not to say that everyone will

find work done while on a neurocognitive enhancer

meaningless, and without the dignity of doing it the natural

way. Everyone faced with the question of using modafinil

will have to decide for herself, first whether she would

feel that work done on the drug would lack in the meaning

that she could find in doing the work in the harder way

that she is used to. Secondly one must decide, if in fact



Vol. I, Issue 1

Spring 2005


work is seen as more meaningless when accomplished on

modafinil, whether the end result of achievement and

better fulfilling one’s roles in life is compensatory for the

sacrifice of meaning.

Americans are wary of the amount of meaning that

can come from work done on modafinil because of another

cultural concept called pharmacological Calvinism. Peter

Kramer defined this concept as “a general distrust of

drugs used for non-therapeutic purposes and a conviction

that if a drug makes you feel good it must be morally

bad” (Kramer, 1993). According to pharmacological

Calvinism, drugs should only be used for the purpose of

curing or treating illness and disease. Neurocognitive

enhancers are particularly subject to scrutiny by this cultural

value because they raise questions about what constitutes

an illness or disease. For instance, Cephalon’s website

sells modafinil as treatment for “excessive sleepiness”,

despite the fact that this is not commonly considered a

specific medical condition and is not a condition that

modafinil is FDA approved to treat. On one hand,

excessive sleepiness is an unpleasant condition that many

Americans may wish there were more help for. If excessive

sleepiness were ever recognized as a condition in and of

itself deserving of medical treatment, our culture might

come to embrace use of modafinil for this purpose. On

the other hand, pharmacological Calvinists fear that this

could pathologize what is seen as normal sleeping time

and daytime energy, and this raises difficult questions

surrounding how much sleep and daytime energy is

“normal”.

Neurocognitive enhancers are also subject to scrutiny

by pharmacological Calvinists because they are seen as

dehumanizing. Gerald Klerman, who first used the term,

wrote that pharmacological Calvinists see pain and

suffering as vital aspects of one’s humanity and that to

absolve one of, for instance, the feeling of tiredness

removes that vital aspect of humanity (Klerman, 1972).

Modafinil in particular is seen as dehumanizing in the

way it seems to package productivity in pill form. There

are limits, though, to how much this viewpoint of

pharmacological Calvinism is accepted in America.

Americans have no qualms about taking an aspirin that

will relieve the suffering from a headache, giving the user

better thought clarity. This is analogous to modafinil as

taking modafinil relieves the suffering of tiredness thereby

lending the user better thought clarity. The distinction

Americans make between what constitutes petty

unnecessary suffering versus suffering that is an integral

part of being human will play a major role in determining

American attitudes towards modafinil.

Our culture’s pharmacological Calvinism could be

the determining value that defines our society’s relationship

with modafinil. However, sleep-deprivation is such an

epidemic in this country and modafinil is such a near-

perfect panacea physically, that pharmalogical Calvinism

may not be as strong an impediment to drug use as it has

been in the past. If off-label use of modafinil does start

to spread, Americans may face a culture of coercion or

even the specter of cultural addiction. Regardless of the

autonomistic integrity of their decisions, Americans may

soon have to decide one way or the other about modafinil.

Just as Ritalin and Prozac and other neuroenhancers

reshaped cultural values, the decisions Americans make

about modafinil will change our culture, redefining how

we view effort and success.

References1. Baranski, J. V., Cian, C., Esquivié, D., Pigeau, R. A., & Raphel,C.

(1998). Modafinil During 64 Hr of Sleep Deprivation: DoseRelated Effects on Fatigue, Alertness, and CognitivePerformance. Military Psychology, 10(3), 173-193.

2. Bastuji, H., & Jouvet, M. (1988). Successful Treatment ofIdiopathic Hypersomnia and Narcolepsy with Modafinil. Progressin Neuro-Psychopharmacology and Biological Psychiatry, 12(5),695-700.

3. Beauchamp, T. L., & Childress, J. F. (2001). Principles ofBiomedical Ethics(5th ed.). New York, NY: Oxford UniversityPress.

4. Dorozynski, A. (1989). Sleepless Pill. British Medical Journal,298(6687), 1543-1544.

5. Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E.,King, P., Parens, E., Sahakian, B., Wolpe, P.R. (2004).Neurocognitive Enhancement: What Can We Do and WhatShould We Do? Nature Reviews Neuroscience, 5(5), 421-425.

6. Kramer, P. (1993). Listening to Prozac. New York, NY: Viking.7. Legarde, D., Batejat, D., Van Beers, P., Sarafian, D., Pradella,S.

(1995). Interest of Modafinil, a New Psychostimulant, During aSixty-Hour Sleep Deprivation Experiment. Fundamental andClinical Pharmacology, 9(3), 271-279.

8. O’Connor, A. (2004). Wakefulness Finds a Powerful Ally. TheNew York Times, D1 and D6.

9. Turner, D. C., Robbins, T. W., Clark, L., Aron, A. R., Dowson, J.,& Sahakian, B. J. (2003). Cognitive Enhancing Effects ofModafinil in Healthy Volunteers. Psychopharmacology, 165(3),260-269.

10. National Center on Sleep Disorders. (2003). 2003 NationalSleep Disorders Research Plan (NIH Publication No. 03-5209).Washington, DC: U.S. Government Printing Office.




Vol. I, Issue 1

Spring 2005

Introduction

Developments in both genetic testing and reproductive

medicine have been so rapid that ethics, public policy and

the law have struggled to keep pace. Both technologies

open the door for novel legal disputes. Thus far, there

have been quite a few cases involving genetic testing and

medical malpractice, some of which will be described in

this paper.1

There have been relatively few court cases

involving oocyte donation, as precedents stemming from

both surrogacy and embryo freezing have provided

relevant guidelines for oocyte donation (Bonnicksen, 2004,

p. 157).2

McDonald v. McDonald (1994) has been the only

case to date involving oocyte donation. The case concerned

a divorced father attempting to gain custody of twins

born using donated eggs. Although it has not yet happened,

there is reason to believe that these two technologies may

soon collide in the courtroom. A case involving genetic

testing and donor eggs would be interesting for two

reasons: it represents one of the first times a person other

than the physician or the birth parents could be held liable

for a wrongful birth or wrongful life suit, and it is a situation

in which birth parents have an unusual amount of control

in the reproductive process, if given the proper

information.

This paper examines the legal implications when

genetic testing fails or is not performed, and a baby –

conceived using donor eggs, is born with some handicap.

Should the parents and the child be able to file wrongful

birth and wrongful life suits? As defined in Smith v. Cote

(1986), wrongful birth claims are, “brought by the parents

of a child born with severe defects against a physician

who negligently fails to inform them in a timely fashion,

of an increased possibility that the mother will give birth

to such a child, thereby precluding an informed decision

as to whether to have the child,”

(Furrow, Greaney,

Johnson, Jost, & Schwartz, 2001, p. 91). Wrongful life

suits as defined in Smith v. Cote are filed on behalf of the

child, “contending that the defendant physician negligently

failed to inform the child’s parents of the risk of bearing

a defective infant, and hence prevented the parents from

choosing to avoid the child’s birth” (Furrow et. al., p. 91).

Thomas Burns (2003, p. 809) claims that many wrongful

life suits are filed if the parents are deceased or otherwise

unable to file a wrongful birth suit, or if the statute of

limitations on wrongful birth expired. If a couple or a

child can file a wrongful birth or wrongful life suit, does it

make a difference that couples are involved in decisions

about genetic testing? Should the donor be liable in such

a suit if a child is born handicapped?

By reviewing the case law and opinions of leading

legal scholars, I contend: Yes, parents should be able to

file wrongful birth suits, if a clear breach of duty is

determined on the part of the physician. However, if

the couple was informed of a genetic test and chose not

to pursue it, the physician is not liable. Children should

also be permitted to file wrongful life suits under some

circumstances. The egg donor is required to be completely

Kristen N. Carey is a Senior at Villanova University and is

double majoring in Biology and Philosophy.


James McCartney, Ph.D. is the faculty sponsor for this

submission. He is an Assistant Professor of Philosophy

at Villanova University.

Address: 800 Lancaster Rd., Villanova, PA 19085, attn/

Philosophy Dept.


Wrongful Life and Wrongful Birth:

Legal Aspects of Failed Genetic Testing in Oocyte Donation

Author: Kristen N. Carey, Villanova University

Faculty Sponsor: James McCartney, Ph.D.

Abstract

The field of reproductive medicine has all but

exploded in recent years, allowing more people access

to novel treatments. New technologies have been

introduced so rapidly that ethics and the law have

been unable to respond appropriately. A particularly

promising reproductive therapy, oocyte donation,

and the wide variety of prenatal genetic tests already

available, will theoretically present the legal world

with a variety of new challenges. How should the

law respond to potential wrongful birth and wrongful

life suits resulting from failed genetic testing, if the

child in question was conceived using a donor egg?

Under what circumstances should the physician be

held liable? Under what circumstances might the

donor be culpable? This paper reviews scholarly

opinions and existing case law in order to answer

these questions.

1

See Safer v. Pack (1996) 291 NJ. Super. 619,677 A.2d 1188.,

Park v. Chessin. (1977). 400 N.Y.S.2d 110, and Curlender v. Bio-

Science Laboratories. (1980). 165 Cal. Rptr. 477.

2

Bonnicksen cites Davis v. Davis, 1992 Tenn. Lexis 400; York v.

Jones, 717 F.Supp. 421 (E.D. Va 1989); In the Matter of Baby M,

537 A.2d 1227 (1988); Stiver v. Parker et al., 975 F.2s 261(6th

Cir.

1992).



Vol. I, Issue 1

Spring 2005

Wrongful Life and Wrongful Birth

forthright in divulging her genetic information, and is only

liable if she willfully withheld genetic information that

reasonable persons would agree is vitally important.

Genetic Testing for Oocyte Donation

When a couple considers conceiving a child, they are

advised of a variety of genetic and prenatal testing. The

couple is at liberty to request or forgo these tests. Couples

often take advantage of genetic testing so that they can

terminate the pregnancy, begin therapy or treatment if

possible, or prepare for the reality of having a handicapped

child. When the couple uses a donated egg, knowledge

of its genetics becomes particularly relevant in making

informed reproductive choices. Carson Strong (1996, p.

123-125) justifies genetic testing in gamete donation,

asserting that it: 1) helps promote the autonomy of a

couple’s reproductive choice, 2) allows for informed

decisions, 3) prevents potential harm to the couple that

may stem from the birth of a handicapped child, and 4)

prevents harm to the potential child if he or she would

suffer from a severe genetic disorder.

As oocyte donation has become a treatment of choice

for many infertile couples, the need for genetic screening

of these oocytes becomes obvious. In 1993, the American

Fertility Society (AFS) established a set of guidelines meant

to pre-screen potential oocyte donors (Strong, p. 123).

These guidelines recommended that any donor should be

excluded if she or an immediate relative has a variety of

genetic disorders (Strong, p.123). After the donor is

accepted, a couple may choose her on the basis of her

genetic profile (Strong, p.133). It does not seem

unreasonable to allow the couple to request additional

testing of the oocyte, or the donor, if the couple is

concerned about the transmission of a specific genetic

disorder, provided that the couple finances this testing,

and it does not provide an undue burden to the oocyte

donor.

Wrongful Birth and Wrongful Life Lawsuits

The jurisprudence of wrongful birth and wrongful

life suits has evolved since the 1960’s, when both claims

were regularly denied. Wrongful birth suits began to be

recognized in the 1970’s, with Becker v. Schwartz (1978);

wrongful life claims gained their legitimacy with Turpin v.

Sortini (1982) (Burns, p. 810). The following sections

examines the relevant jurisprudence in wrongful birth and

wrongful life cases in general, then conjecture how this

jurisprudence might apply in potential cases involving

genetic testing and oocyte donation.

A. Wrongful Birth

Smith v. Cote explained the criteria for determining

the validity of wrongful birth suits: 1) the plaintiff must

prove that the defendant was negligent in performing his

defined duties towards her, and 2) the established breach

of duty must also have a causative relationship to the

injury (Furrow et. al., p. 92). The majority in Smith v. Cote

notes, “this standard does not require a physician to identify

and disclose every chance. . . of the occurrence of every

possible birth ‘defect’” (Furrow et. al, p. 92). Rather, the

physician’s actions should be evaluated against the

standards of the medical profession.

The first traditional wrongful birth suit was Gleitman

v. Cosgrove (1967). The plaintiff unsuccessfully claimed

physician negligence in informing her of the possibility

of harm to her fetus after she developed rubella in the

second month of her pregnancy (Gletiman v. Cosgrove, p.

690-691). The court denied the claim on the grounds

that the harm done was incalculable and “countervailing

public policy supporting the preciousness of human life”

(Burns, p. 814-815). An appeals court first allowed a

successful wrongful birth suit in Becker v. Schwartz. This

case was a “consolidated appeal,” including the prior

wrongful birth suit of Park v. Chessin (1977). The Beckers

sued for physician negligence in failing to advise her of

the increased risk of Down syndrome in pregnancies of

older women; Park’s suit involved erroneous counseling

in advising of the transmission of a fatal polycystic kidney

disease (Burns, p. 816). The court allowed for the recovery

of specific damages only (Burns, p. 816). The Smith v.

Cote ruling was the first to allow compensation for

emotional losses, provided they were “tangible,” and for

“extraordinary parental care” (Furrow, et. al., p. 96). Like

the plaintiff in Gleitman v. Cosgrove, Linda Smith had also

contracted rubella in the second trimester of her

pregnancy and had not been informed of the risk of

carrying her fetus to term (Smith v. Cote, p. 128). Thus,

the evolution of wrongful birth suits provides precedent

for cases involving clear physician negligence.

B. Wrongful Life

Courts have been even more wary of wrongful life

suits, although there have been successful suits in

California, New Jersey, and Washington. The jurisprudence

governing wrongful life suits is much more varied than

that of wrongful birth suits. The most common reason

for denying wrongful life suits has been the nonexistence

paradox (Burns, p. 817). In the Gleitman v. Cosgrove wrongful

birth/wrongful life suit, the court argued that since the

purpose of tort law is to restore the victim to his former

state, tort law was insufficient in wrongful life suits:

damages are “impossible to calculate” because the standard

of comparison is flawed existence as compared to non-

existence (Gleitman v. Cosgrove, p. 692). “[T]he infant

plaintiff is therefore required to say not that he should

have been born without defects but that he should not have

been born at all” (Burns, p. 811). Legal use of the non-

existence paradox correlates with extensive philosophical

debate about the moral status of people who do not yet

exist. Jan Neverson, Gregory Kavka, and Derek Parfit



Vol. I, Issue 1

Spring 2005


all discuss this problem under different names – the “non-

identity problem,” the “futurity problem,” and the “paradox

of future individuals” (Heller, 2004, pg. 119). These

scholars are wary of attributing dignity to hypothetical

persons and are even more hesitant to assess harm done

to these persons, in much the same way as the Gleitman

court.

The nonexistence paradox was again famously stated

in Becker v. Schwartz, then cited in Smith v. Cote. Although

the aforementioned 1978 Becker v. Schwartz wrongful birth

decision was successful, the court denied their wrongful

life suit, reasoning that there was “no cognizable injury”

under the law (Burns, p. 812). The court denied Smith’s

wrongful life suit on the basis that it was not in the position

to decide whether or not a person’s life is worthwhile

(Furrow, p. 96). Berman v. Allen (1979), a wrongful life

case also concerning a child born with Down’s syndrome,

denied the claim, arguing the “sanctity of life should be

preserved” (Burns, p. 817).

Curlender v. Bio-Science Laboratories (1980) paved the way

for future wrongful life legislation in that the suit was

successful, but the jurisprudence flawed. The Curlenders

requested genetic testing on themselves to determine if

they were carriers for Tay-Sachs. Yet when their daughter

was born with the disease they sued their physicians,

claiming the testing was negligently conducted (Curlender

v. Bio-Science Laboratories, pg. 816). Curlender ignored the

nonexistence paradox, focusing on the economic

implications of being born with a genetic disease. The

court allowed general, specific and punitive damages

(Burns, p. 819). Curlender was precedent for three more

successful wrongful life suits. The first, Turpin v. Sortini

(1982) involved a couple who conceived two deaf children,

whose condition was the result of a rare genetic disorder

(p. 223). After conceiving the first child, the plaintiffs

argued that their physicians should have warned them of

the genetic basis of their daughter’s deafness, before they

conceived their second child (Turpin v. Sortini, p. 223).

The court in this case argued that awarding a child damages

does not correlate to value judgments on his or her life as

compared to if he/she had never been born (Burns, p.

820).

In Harbeson v. Parke-Davis, Inc. (1983), the Washington

Supreme Court did not negate the nonexistence paradox,

but used it only to award the plaintiff “special” damages,

including compensation for medical expenses (Burns, p.

821). Mrs. Harbeson was an epileptic who was prescribed

the drug Dilantin during two of her pregnancies, both of

which resulted in children with mental and physical

disabilities (Harbeson v. Parke-Davis, Inc., p. 462-463). The

last successful wrongful life suit of note, Procanik v. Cillo

(1984), also involved a woman who contracted rubella

during the first trimester of her pregnancy (p. 342). The

Supreme Court of New Jersey ruled in that, “whatever

logic inheres in permitting parents to recover for the cost

of extraordinary medical care incurred by a birth-defective

child, but in denying the child’s own right to recover those

expenses, must yield to the inherent injustice of that result”

(Burns, p. 821).

These three cases were “maverick” cases in wrongful

life jurisprudence in that there is still considerable debate

concerning the concept of wrongful life. Indeed, these

cases should be considered historic, but not necessarily as

setting a legal precedent. Today, prominent scholars argue

both sides.

C. Wrongful Birth & Wrongful Life

Cases Involving Genetics & Oocyte Donation.

Although there has not yet been a case of wrongful

birth or wrongful life involving genetically defective

donated oocytes, according to the above cases involving

either misdiagnosis or faulty advice on genetic matters, it

would seem that a physician would have a duty to warn

his patients of risk factors and the availability of genetic

testing to a degree of what “a reasonable person in the

patient’s position would want to know” (Strong, p. 127).

A clear breach of duty could be established if a physician

fails to offer a particular genetic test within the purview

of the established minimum standard. Therefore, if a

case arose involving a handicapped child born using a

donated egg that had not been given adequate testing,

there is clear precedent that the physician could be held

liable.

However, there may be limits to physician negligence,

even with a breach of duty. Physician liability in a wrongful

birth suit would be questionable if the genetic disorder

of the plaintiff was an adult-onset disease. Strong argues

that if would be difficult to prove economic harm – the

most common claim in wrongful birth suits – in such a

case (p. 131). Emotional harm would also be difficult to

prove in a wrongful birth suit of this nature because courts

would likely consider this harm “offset by the benefits of

having a child” (Strong, p. 131). Strong contends that

wrongful life suits in this instance are categorically

inappropriate because most adult-onset genetic disorders

do not make “nonexistence” preferable to the already

lived life (p. 131).

There is a second limit to physician negligence relevant

to all potential wrongful birth cases concerning genetic

testing – including those involving donated eggs. Although

most genetic tests are 90-95% accurate in diagnosing the

existence of a genetic disorder, they are not entirely

foolproof (Strong, p. 128). If a child is born with a genetic

disorder after he or she had a prenatal test, the physician

should only be held liable if he failed to administer the

test correctly. The physician cannot be held liable if the

test failed to work for reasons out of his or her control.

The aforementioned issues are all relevant in potential

wrongful life suits involving donated oocytes. Because



Vol. I, Issue 1

Spring 2005


of the conflicted jurisprudence in wrongful life suits, any

recommendation of liability in cases involving egg

donation should be made cautiously. Carson Strong warns

against wrongful life suits involving genetic abnormalities,

arguing that there are only “rare” cases in which

“abnormalities are so severe that it can reasonably be

argued that nonexistence is objectively preferable to the

life the infant would have” (p. 125). However, if the goal

of wrongful life suits is to provide some compensation to

the victims of negligent genetic counseling, then wrongful

life suits may be appropriate as an alternative to wrongful

birth suits because they have the same objectives (Burns,

p. 808). Therefore, courts should allow either a wrongful

life or a wrongful birth suit, but the two should never be

used simultaneously.

The interesting twist in wrongful birth and life suits

involving genetics and oocyte donation is that the couple

is involved in making medical decisions. Hence, the onus

of responsibility is largely on the couple, provided they

have received standard genetic counseling. This introduces

the possibility of a lawsuit by a child against his or her

parents for wrongful life. In the past, courts have not

ruled in the child’s favor in similar cases. Dorothy Wertz

explains, “the availability of genetic tests must not be

allowed to create an illusion that most disabilities are

preventable and therefore unacceptable to society” (Ford,

2004, pg. 210). It would seem that a successful wrongful

life suit against parents would be subject to a stricter

standard of proof. A parent could be held liable if she

were somehow responsible for causing a particular genetic

disorder or otherwise acted in a manner that reasonable

persons would deem irresponsible.

The use of donor eggs presents the potential for

these suits to be levied against the oocyte donor for failing

to provide accurate genetic information, although the onus

again seems to fall on the couple because it makes the

final decisions. However, if a donor’s conscious and willful

failure to provide accurate genetic information is proven

to directly influence a couple’s decisions in oocyte selection

and genetic testing, then the donor could possibly face a

wrongful birth or wrongful life suit.

Conclusion

There is precedent for both wrongful birth and

wrongful life suits involving genetic screening and oocyte

donation. Either the physician or the donor could

potentially be sued. If the suit indeed results from clear

physician negligence, there is little that any public policy

could do to prevent it. However, John Robertson (1996)

argues that the “lack of legal infrastructure” in egg

donation is problematic because couples cannot be certain

about the legal ramification of utilizing this therapy (p.

14-17). Practices in oocyte donations vary across clinics

and legislation is virtually nonexistent (Strong, p. 163).

Both Robertson and Andrea Bonnicken suggest that pre-

emptive legislation be enacted to establish a minimum

standard for genetic testing and a minimum standard of

genetic information required of donors (Robertson, p.

186 and Bonnicken, 2004, p. 157). If these practices

were streamlined, then couples, physicians, donors, and

courts would be able to both communicate effectively

and prevent future lawsuits.

References1. Becker v. Schwartz. (1978). 46 N.Y.2d 401,411,386.2. Berman v. Allen. (1979). 404 A.2d 8.3. Bonnicksen, A. (1996). Private and Public Policy Alternatives in

Oocyte Donation. In Cynthia Cohen (Ed.), New ways of MakingBabies: The Case of Egg Donation (pp. 156-175).Bloomington, IN: Indiana Univ. Press.

4. Burns, T. (2003). When Life is an Injury. Duke Law Journal, 52,807-839.

5. Curlender v. Bio-Science Laboratories. (1980). 165 Cal. Rptr.477.

6. Ford, N. Ethical Aspects of Prenatal Screening and Diagnosis.In Gerard Magill (Ed.), Genetics and Ethics: An InterdisciplinaryStudy (pp. 197-216). St. Louis, MI: St. Louis Univ. Press.

7. Furrow, B. (2001). Bioethics: Health Care Law and Ethics. (4th

ed.). St. Paul MN: West Group.8. Gleitman v. Cosgrove. (1967). 227 A.2d 689.9. Harbeson v. Parke-Davis, Inc. (1983). 656 P.2d 483.10. McDonald v. McDonald. (1994). 196 A.D.2d 7; 608 N.Y.S. 2d

477.11. Park v. Chessin. (1977). 400 N.Y.S.2d 110.12. Procanik v. Cillo. (1984). 478 A.2d 755.13. Robertson, J. (1996). Legal Uncertainties in Human Egg

Donation. In Cynthia Cohen (Ed.), New ways of Making Babies:The Case of Egg Donation (pp. 175-188). Bloomington, IN:Indiana Univ. Press.

14. Smith v. Cote. (1986). 128 N.H. 231, 513 A.2d 341.15. Strong, C. (1996). Genetic Screening in Oocyte Donation:

Ethical and Legal Aspects. In Cynthia Cohen (Ed.), New waysof Making Babies: The Case of Egg Donation (122-138).Bloomington, IN: Indiana Univ. Press.

16. Turpin v. Sortini. (1982). 643 P.2d 954, 966.




Vol. I, Issue 1

Spring 2005

Introduction

According to a popular anecdote often told to

introduce chemistry courses at universities, the birth of

chemistry was the death of vitalism, a theory of life which

posits the existence of two classes of metaphysically

disparate matter. According to the theory, the matter which

makes up living organisms is endowed with a vital force

that is absent from the matter which makes up non-living

objects. The two classes of matter can be referred to as

“organic” and “inorganic.” Another facet of the theory is

that organic matter can only be created by organic matter,

since inorganic matter lacks the vital force needed for life.

Vitalism, as told by the legend, was overthrown by Friedrich

Wöhler’s use of inorganic salts to synthesize urea, an

“organic” compound. Since Wöhler started with inorganic

materials, did not add a vital force, and yet was able to

make an organic compound, it was reasoned that vitalism

was false. This so-called death of vitalism is believed to

have cleared the way for modern science. In fact,

contemporary accounts do not support the claim that

vitalism died when Wöhler made urea.

The Wöhler Myth, as historian of science Peter J.

Ramberg calls it, originates from one account by Bernard

Jaffe, the author of a popular history of chemistry in

1931 that is still in print today. “Ignoring all pretense of

historical accuracy, Jaffe turned Wöhler into a crusader

who made attempt after attempt to synthesize a natural

product that would refute vitalism and lift the veil of

ignorance, until ‘one afternoon the miracle happened’”

(Ramberg, 2000, p. 170-195). Though today’s chemistry

texts present variations of the story, including those that

temper its claims that chemists have disproved vitalism,

the story appears in one form or another in most texts.

Ramberg proposes compelling reasons for the prevalence

of the story, but instead of discussing why the story is

prevalent in the pedagogical tradition of chemistry, I will

discuss the implications of the Myth’s prevalence. I propose

that widespread belief in some form of the Wöhler Myth,

or in the beliefs that surround it, contributes to an

unnecessary opposition between science and vitalism which

also puts science and religion in opposition.

A Brief History of Vitalism

Humans have been grappling with the questions of

vitalism since the beginning of civilization. What is the

nature of that which is “living”? Is the material that makes

up living beings inherently different from the material that

makes up non-living things? Do we have souls?

At least as early as the Greek philosopher, physician

and poet Empodocles (504 to 443 BC), there have been

coherent philosophies to answer these questions.

Empodocles proposed that the essence of life is from

ether, “a subtle fire existing from all eternity and present

in air and all matter” (Haller, 1986, p. 81-88). Vitalism

was first challenged by the emergence of philosophies like

Descartes’, which extend a mechanistic explanation of

natural phenomena to organisms. Descartes’ philosophy

included a mind-body dualism, however, and a metaphysical

soul is an important element. A more extreme mechanistic

view in the form of radical materialism has been posited

since then which utterly excludes the soul from existence.

Even with the emergence of a new materialist paradigm

and the emergence of modern science in the sixteenth

and seventeenth centuries, however, vitalism continues to

have its constituents. Nineteenth century vitalists include

Henri Bergson and the famous embryologist Hans Driesch.

The philosophical dialogue continues today, but some

scientists, perhaps raised on the Wöhler Myth and

encouraged by the fact that vitalism has fallen out of favor

among modern philosophers, are confident that scientific

knowledge is outmoding vitalism (Bechtel & Richardson,

November 15, 2004, n.p.). Francis Crick addressed the

Anthony Cheng is a Sophomore at the University of Penn-

sylvania and is majoring in Molecular Biology.


Paul Root Wolpe, Ph.D. is the faculty sponsor for this sub-

mission. He is the Senior Fellow at the Center of Bioethics

and an Assistant Professor of Psychology at the Univer-

sity of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA 19104


The Real Death of Vitalism:

Author: Anthony M. Cheng, University of Pennsylvania

Faculty Sponsor: Paul R. Wolpe, Ph.D.

Abstract

There is a tendency for extraneous issues to

unnecessarily complicate bioethical debate. Vitalism

is one of these topics. The implications of the Wöhler

Myth, a popular account of science’s victory over

vitalism, are examined descriptively and normatively:

I reflect on how the Myth’s prevalence shaped the

attitudes of science and religion and evaluate those

attitudes.

Implications of the Wöhler Myth

The Real Death of Vitalism



Vol. I, Issue 1

Spring 2005

vitalist with supreme confidence: “And so to those of you

who may be vitalists I would make this prophecy: what

everyone believed yesterday, and you believe today, only

cranks will believe tomorrow” (Crick, 1967, p. 99).

Some such scientists argue that a metaphysical belief

such as vitalism can be overturned by scientific

experimentation, just as it was in the Wöhler Myth, and

they are on something of a crusade against vitalism. Crick

believed that “[…] the motivation of many of the people

who have entered molecular biology from physics and

chemistry has been the desire to disprove vitalism” (p. 24).

Is Vitalism Really Dead?

Vitalistic beliefs persist for reasons that do not appear

to be subject to changes in scientific knowledge, as is

proposed in the Wöhler Myth. Studies show that children

hold vitalistic beliefs. When asked to explain how we get

energy in one study, 85% of the children responded using

a vitalistic explanation (Kayoko & Hatano, 2004, p. 356-

362). It seems that such early beliefs must influence future

learning and it is possible that even scientific knowledge

gained in future learning is absorbed in the framework of

vitalism.

Historically, even scientists have not universally

accepted the death of vitalism. Since the beginning of

modern biology, there have been those who see in the

increasing complexity of our understanding of life a

multiplication of ways for vitalism to fit into our beliefs.

Lord Kelvin, who penned one of the first versions of the

second law of thermodynamics, wrote that, “The influence

of animal or vegetable life [vital energy] on matter is

infinitely beyond the range of any scientific enquiry

hitherto entered upon” (MacFie, 1912, p. 228).

The layman has given credit to such views. In fact,

the public has embraced one scientist’s work to prove the

existence of a soul and consequentially to prove the validity

of vitalism. The conclusion of a 1907 study by Dr.

Duncan MacDougall has gained the cultural prominence

of an urban legend, stated in the tagline of a 2003 movie

21 Grams: “They say we all lose 21 grams at the exact

moment of our death” (Focus Features, November 16,

2004, n.p.). MacDougal measured the weight of patients

when they were dying and reported a sudden decrease in

the weight of patients at the moment of death. From his

data, he concluded that there is, in fact, a soul substance

essential to the body in life and in the form of “gravitative

matter” (Haller, 1986, p. 81). That is, there is a soul of

determinate weight that departs at the moment of death.

Numerous criticisms can be (and have been) made against

his methods and his conclusions, but it is significant,

nonetheless, because it demonstrates that vitalism is not a

dead system of belief among scientists or by lay people.

Scientists may want to seriously consider Kelvin’s

warning and ask if vitalism is even a scientific question.

Even in a hypothetical future when we have an

immaculately detailed knowledge of the functioning of

our bodies, there may still be no way to absolutely prove

or disprove vitalism. What experiment could be devised

to prove that a rock, which is ostensibly inorganic, has no

poetic spirit which would manifest lyrical words if given a

set of vocal cords or a way to write?

Religion Engaging the Myth

For those religions in which there is life after death,

there must be something of the body which is not bound

by the natural laws of science. Vitalism is a theory which

allows for the existence of a soul, so concepts of Western

theism are often inherently vitalistic. On the other hand,

biological science involves the mechanization of natural

processes. Scientists observe, quantify, and theorize

explicitly within the confines of natural law. If there is

allowance for phenomena outside those confines, one

might believe that the scientist’s pursuit is undermined.

Vitalism and science may be incompatible. Thus, science

and religion can position themselves in direct opposition.

The Wöhler Myth encourages this opposition, which has

manifested itself in a struggle over intellectual authority

in society. Religion and Science are now in opposition over

how people understand life.

Religious groups have engaged in this debate. The

Catholic Church explicitly invokes science to support

vitalism: The Instruction, a church decree, states that

‘“Certainly no experimental datum can be in itself

sufficient to bring us to the recognition of a spiritual soul’,

[…] but science gives us ‘a valuable indication’” (Coughlan,

1990, p. 67). The Church uses this vitalism as the basis

for important doctrines regarding issues such as abortion.

The Church’s acceptance of the scientist’s belief that

vitalism can be proven or disproved is dangerous and

unnecessary: Dangerous because beliefs of faith should

be independent of proof or scientific validation;

unnecessary because theistic beliefs are concerned not

with the material nature of the universe but with the spirit

“behind and beyond” the universe (p. 169). That is, even

a mechanistic universe could have been created by a godly

mind. Essentially, the question of vitalism is a metaphysical

debate outside the realm of and unanswerable by science,

contrary to the Wöhler Myth. Religion need not oppose

science on this question.

Likewise, science need not engage in the debate.

Science gains its authority from its coherent explanations

of observable phenomena. Vitalism deals with

unobservable phenomena and so the fields of science

and vitalism do not intersect. Further, science provides

tangible benefits in the form of improvements in health

treatments, which gain the trust and acceptance of society.

This is empirically verifiable since biomedicine’s paradigm

of health and body is so pervasive.




Vol. I, Issue 1

Spring 2005

Practical Implications

If vitalism has no philosophical implications for

religion or science, does it have implications for society’s

conduct? One might think that the tension between

materialism and vitalism could have importance due to

its relationship to free will: If we are purely mechanistic

beings, are we really not free to make choices? If not,

what are the consequences? In fact, there are no practical

implications in the framework of free will that hinge on

vitalism. If we accept materialism and we accept that we

have no soul, nothing changes. Our lives will still be marked

by “[…] thoughts, feelings, hopes, confusions, moral

dilemmas, aesthetic experiences, and episodes of dark

doubt and deep faith” (Eccles, 1984, p. 48).

Common sense might also suggest that beliefs about

vitalism would have importance regarding controversial

bioethical questions. One might think that, for example,

if someone believes an embryo has a soul, they might

also be likely to be against abortion. This claim can be

evaluated empirically. A possible approach is to use the

research methodology of Robert A. Embree who

attempted to correlate “mind-body” beliefs with stances

on elective abortion (Embree, 1998, p. 1267-1281). Using

a modified version of his method, a possible correlation

could be investigated between a subject’s beliefs about

vitalism, attitude toward abortion (prochoice or antichoice)

and beliefs about the meaning of abortion (murder or

not murder).

A possible correlation between vitalistic belief and

an individual’s stance on bioethical issues does not mean

that vitalism ought to have implications in the modern

debate in bioethics, however. Take the American abortion

debate, for example. One would be making an unsound

judgment if he or she thought that abortion could be

decided by a proof or belief in vitalism. Validation of

vitalism might separate living and nonliving matter onto

separate moral planes, justified by the presence or absence

of a vital force, but whether or not the embryo is living is

not a question in debate. The embryo is undeniably living,

as is a hair follicle. Opposition arises here when the relative

moral worth of the embryo in the context of the mother’s

rights and responsibilities is questioned. This salient

question would not be resolved by an answer concerning

the vitalism debate.

The debate about embryonic stem cell research is

another case. Perhaps scientists believe that a materialistic

world-view would lead to societal acceptance of the

sacrifice of embryos for the sake of research. If there is

no vital force, all matter is the same in essence. The

sacrifice of embryos for research, then, would not be a

violation of morality since “killing” the embryo is merely

the disassembly of atoms and molecules. Research could

then proceed. This would be an untenable conclusion.

Would murder then be on the same moral plane as

smashing a rock? In a society, it could not be so. We assign

moral worth to things regardless of their metaphysical

status. Even in the absence of a vital force, we would be

left struggling with the same task of deciding the morality

of sacrificing embryos.


Logically, vitalism is ultimately not a question of great

consequence, and yet there are vehement beliefs on both

sides. This can be explained in part by the opposition

between science and religion fostered by the Wöhler Myth.

Since vitalism and religion are so closely tied, the Wöhler

Myth arranged science and religion antagonistically. This

antagonistic relationship, perpetuated by the Wöhler Myth’s

distortion of the importance of the vitalism debate, has

resulted in a great deal of unproductive debate. Vitalism

ought not to have practical implications in religion or in

societal conduct. Care should be exercised to ensure that

vitalism is not used as a surrogate to address questions of

bioethics or intellectual authority. Its debate belongs in

the realm of the philosopher of metaphysics and outside

the realm of common discourse. This, perhaps, should

be the real “death of vitalism.”

References1. Bechtel, William and Robert C. Richardson. Vitalism. In E.

Craig (Ed.), Routledge Encyclopedia of Philosophy. London:Routledge. Retrieved November 15, 2004, from http://www.rep.routledge.com/article/Q109.

2. Coughlan, Michael J. (1990). The Vatican, the Law and theHuman Embryo. Iowa City: University of Iowa Press, 67, 169.

3. Crick, Francis. (1967). Of Molecules and Men. Seattle: Universityof Washington Press, 24, 99.

4. Eccles, Sir John and Daniel N. (1984). The Wonder of BeingHuman. New York: The Free Press, 48.

5. Embree, Robert A. (1998) Attitudes toward Elective Abortion:Preliminary Evidence of Validity for the Personal Beliefs Scale.Psychological Reports 82,1267-1281.

6. Embree, Robert A. and Marlowe C. Embree. (1993) The PersonalBeliefs Scale as a Measure of Individual Differences inCommitment to the Mind-body Beliefs Proposed by F.F. Centore.Psychological Reports, 73, 411-428.

7. Focus Features, “21 Grams” http://www.21-grams.com (accessedNovember 16, 2004).

8. Haller, John S. Jr. (1986). The Great Biological Problem:Vitalism, materialism, and the philosophy of organism. NewYork State Journal of Medicine 86(2), 81-88.

9. Kayoko Inagaki and Giyoo Hatano (2004). Vitalistic causality inyoung children’s naive biology. Trends in Cognitive Sciences,8(8), 356-362.

10. MacFie, Ronald Campbell (1912). Heredity, Evolution, andVitalism: Some of the discoveries of modern research into thesematters – their trend and significance. New York: William Woodand Company, 228. The brackets were inserted by MacFie.

11. Ramberg, Peter J. (2000) The Death of Vitalism and the Birthof Organic Chemistry. Ambix, 47(3),170-195.




Vol. I, Issue 1

Spring 2005

Most of us have, at some point in time, attempted to

control or alter our mood or cognitive functioning.

Whether it be sipping coffee in the morning to wake up,

devouring chocolate as a pick-me-up, or drinking alcohol

to become relaxed and sociable, humans constantly

introduce foreign substances into their bodies to achieve

a desired state of mind or level of performance. In the

past, society relied on chance for the development of

these substances (Farah & Wolpe, 2004, p. 40). For

example, an antihistamine drug candidate happened to

calm schizophrenics and an antipsychotic drug candidate

happened to be a better antidepressant (Farah & Wolpe,

p. 40). However, molecular neuroscience has increased

our understanding of neurotransmitter systems as well as

the biological basis of memory and mood, which has led

to the creation of drugs that are highly selective and

created for a specific purpose (Farah & Wolpe, p. 41).

Currently, many promising drugs have been created for

the specific treatment of Alzheimer’s disease (AD),

Schizophrenia and middle-age / elderly cognitive decline,

yet many of these drugs also improve cognitive functioning

and mood of non-afflicted individuals (Wolpe, 2002, p.

388). Thus, one must consider that psychopharmacology

could be used to enhance the brain of individuals who

are not clinically ill. Since the brain is the biological

foundation of who we are, many ethical concerns arise

regarding the use of drugs to alter the brain solely for

enhancement (Farah & Wolpe, p. 35; Farah, Illes, Cook-

Deegan, Gardner, Kandel, King, Parens, Sahakian, Wolpe,

2004, p. 423). Concerns about safety and personhood

arise, in addition to concerns about coercion, distributive

justice, and the medicalization of the human condition.

On the other hand, imagine the potential to eliminate

socially undesirable behaviors, increase efficiency in the

workplace, and increase one’s memory. Moreover, in

our society one must not overlook the personal freedom

to choose to utilize, or not utilize, the latest technology.

By familiarizing ourselves with recent research and current

and developing products, and examining the ethical reasons

in support for pharmacological enhancement, personal

and societal objections to it, and respective counter-

arguments to the objections, pharmacological

enhancement becomes more apparently ethical and should

be allowed, given that vigilant policies are implemented.

However, some questions must be addressed and

definitions presented in order to fully understand this

debate.

For clarification, ethicist Paul R. Wolpe asks: How

does one differentiate between the terms “treatment” and

“enhancement (Wolpe, p. 388)?” It could be said that

treatments remedy the sick, those below average, the

subnormal. Enhancement is then the improvement of

individuals who are not sick, those who are average, normal

(Wolpe, p. 388-90). One could argue that no individual is

“normal” and thus pharmacological intervention can be

considered treatment, potentially eliminating the

controversy of enhancement. As one can imagine, a deep

philosophical discussion could pursue because one would

then need to define “normal” and “average” in order to

differentiate these terms (Wolpe, p. 388). Furthermore,

who is responsible for formulating the definitions? For

example, in most Western societies, traits that are deemed

Michael F. Esposito is a Junior at the University of Penn-

sylvania and is majoring in Biology.



mission. He is the Senior Fellow at the Center of Bioeth-

ics and an Assistant Professor of Psychology at the Uni-

versity of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA

19104


Ethical Implications of Pharmacological

Enhancement of Mood and Cognition

Author: Michael F. Esposito, University Of Pennsylvania

Faculty Sponsor: Paul Root Wolpe, Ph.D.

Abstract

With advances in the molecular biology of

neuroscience, there is an increased understanding

of neurotransmitter systems and the biological basis

of memory and mood. This has lead to the research

and development of highly selective drugs that serve

to alter the brain for treatment and enhancement.

Many ethical concerns arise about the use of

pharmacological agents to alter the brain solely for

enhancement. Safety, alteration of personhood,

distributive justice, and the medicalization of the

human condition will be discussed. However, the

potential to increase one’s memory and efficiency in

the workplace, to eliminate socially undesirable

behaviors, and to strengthen the military provides a

strong argument in favor of pharmacological

enhancement. In conjunction with the ethical

concerns, this paper explores recent research and

current and developing drugs, ultimately arguing that

pharmacological enhancement is acceptable as long

as certain policies are implemented.



Vol. I, Issue 1

Spring 2005

Ethical Implications of Pharmacological Enhancement of Mood and Cognition

valuable, such as happiness, are normal, well, and accepted

and any increase in such a trait would be considered

enhancement. Traits that people want to do away with,

such as criminality or depression, are usually characterized

as illnesses or subnormal and can be “treated (Wolpe, p.

388).” Any definition of “normal” will fail to be universal

because it is the result of compromised values which are

culturally derived and influenced by particular societies

(Wolpe, p. 390). Thus, for this discussion, enhancement

shall be defined as improving the psychological functions

of individuals who are not clinically ill, as defined by

medical specialists. Furthermore, cognition shall be defined

as thinking skills that include perception, memory,

awareness, reasoning, judgment, intellect, and imagination.

Mood shall be defined as a psychological state of feeling.

Exploring the present state of research gives the context

needed for further understanding the debate.

Current research targets enhancers for mood,

memory and executive functions, sleep, libido, and appetite

(Farah et al, p. 421). Although military and private research

for cognitive and mood enhancing drugs is ongoing, “smart

pills are not around the corner (Hall, 2003, p. 56).” They

are years away from government approval but several

are in clinical testing or are under development (Hall, p.

57). In fact, several drugs that target other cognitive

functions are currently available including

Dextramphetamine for wakefulness, Adderall and Ritalin

for increased attention and working memory, and

Modafinil for wakefulness, increased attention, and

alertness (Hall, p. 60-2; Turner, Robbins, Clark, Aron,

Dowson, Sahakian, 2002). Also, Donepezil, Rivastigmine,

and Galantamine have been shown to prevent cognitive

deterioration and slow memory loss in AD patients and

show neuroprotective effects over the long term (Hall, p.

56). Moreover, drugs like Selective Serotonin Reuptake

Inhibitors (SSRI), such as Prozac, exist to reduce negative

moods and increase affiliation behavior without serious

short-term side-effects (that cannot be treated with other

drugs) (Farah & Wolpe, p. 41). And with the help of

molecular biology in understanding and identifying

neurological processes, novel approaches are being

implemented to create new drugs for treating diseases

and enhancement (Farah & Wolpe, p. 41). Drugs are

being developed to target the initial cascade for memory

by utilizing ampakines to initiate long-term potentiation

which is implicated in memory formation (Farah & Wolpe,

p. 42). In addition, MEM1414, a CREB enhancer, targets

the CREB gene with the intent of enhancing memories

(Farah et al., p. 422; Hall, p. 62, 64-5). Benzodiazepines

and CREB suppressors are under development to repress

traumatic memories (Farah & Wolpe, p. 42; Hall, p. 62,

64). With additional research, drugs are becoming

increasingly selective and risk-averse (Farah & Wolpe, p.

41). Thus, current drugs that exhibit effective treatment

of clinical ailments and developing drugs that show

promise are becoming increasingly suitable for

enhancement.

Aside from solely understanding the promising

laboratory tested effects of current drugs, there are

numerous ethical reasons in support of pharmacological

enhancement. Living in an increasingly skill-driven and

socially interactive society, one must be focused and have

an efficient memory to be successful (Rose, 2002, p. 975).

Ritalin and Adderall are two drugs that enhance attention

and improve performance in problem-solving and other

tasks requiring the executive function use (Farah & Wolpe,

p. 42). Those who are average or below average for certain

memory tasks may find these drugs helpful in advancing

careers, making a better living, or surmounting career-

threatening circumstances. Furthermore, drugs, like

Donepezil, could be used as a prophylactic (Farah &

Wolpe, p. 41). Donepezil slows memory loss in AD patients

and could be used to slow age-related gradual cognitive

decline that ultimately affects everyone, thus improving

the quality of life as one matures (Hall, p. 63). In addition,

several careers could benefit from enhancement—society

could have safer flights, safer medical encounters, and a

stronger military (Wolpe, p. 392; Hall, p. 57, 60).

Society could further benefit from pharmacological

enhancement if it is implemented in the criminal justice

system (Farah, 2002, p. 1125). For instance, although

controversial in its own right, convicts could potentially

be sentenced to take enhancement medications in order

to suppress further devious, criminal behavior. Some

may object to forced medication, but anti-androgen drugs

are already used to treat convicted aggressive persons

(Farah, p. 1125-6). Allowing convicts the choice of either

medication or jail time may be as effective and less

controversial. In addition, enhancement could serve as

an equalizing force in society (Farah et al., p. 423). It has

the potential to eliminate inequalities accumulated in other

sectors of society. For example, in a cognitive test, a

poor education could be augmented with brain enhancing

medication.

Understanding the objections to pharmacological

enhancement of cognition and mood is important in this

debate and further enables one to formulate counter-

arguments to these objections. These objections and

counter-arguments can be separated into issues users face

and issues society face. Issues that individuals face include

the concept of personhood; many believe that it is

unnatural to modify the brain. Furthermore, it is argued

that people are characterized by their cognitive abilities

and by altering the brain one alters the person’s values,

moods, and perspectives and ultimately that person

becomes unrecognizable to others (Farah & Wolpe, p. 36,

43; Farah et al., p. 423-4). Although valid, this argument

is not sound and as Arthur Caplan explains, people who



Vol. I, Issue 1

Spring 2005


make this argument have modified themselves in some

other way, using eye-glasses, artificial hips, electricity, and

automobiles (Caplan, 2003, p. 105). Also, do people not

drink alcohol and caffeine, take Ritalin and Prozac, and

use nicotine or even marijuana to alter their cognitive

states (Wolpe, p. 388)? Enhancement via “drugs” is already

a part of life (Farah & Wolpe, p. 41). There is already a

general acceptance of other enhancement techniques like

cosmetic surgery in addition to non-neuroscientific

cognitive interventions like meditation and psychotherapy.

Could using pharmacological enhancers help individuals

attain self-actualization rather than assuming that the

individual is being altered?

Another moral issue is the belief that people should

earn their achievements, the colloquial “no pain, no gain”

argument. Leon Kass, a member of President Bush’s

Bioethics Panel, states that achievements via drugs are

equivalent to cheating (Hall, p. 57). It is further argued

that accomplishments are meaningful because of the effort

put forth and that reducing effort will reduce meaning

(Farah & Wolpe, p. 43). But who says that taking cognitive

enhancing drugs reduces effort? Individuals still need to

take time to learn information, although the effort may

be more concentrated, efficient, and less time consuming.

In addition, is the meaning of the experience of walking

a few miles lost just because someone drives to work

everyday and never walked such a distance? That person

still understands the meaning of walking and can imagine

how difficult it would be to walk such a distance everyday.

Although common to bioethical debates, an individual’s

safety is an important issue here as well. When

manipulating very complex systems like the brain, there is

great risk of serious and unanticipated side-effects,

especially in the long-term (Farah et al., p. 423; Farah, p.

1125). Perhaps taking memory enhancers will lead to

unforeseen premature cognitive decline (Farah et al., p.

423). Additionally, enhancers may affect the selectivity

of neurological processes, enhancing traumatic memories

and unimportant details that are supposed to be forgotten.

When one process is targeted, other processes may be

affected and unexpected linkages may arise (Wolpe, p.

393). For example, an enhancer may increase memory

but negatively impact mood and attention. In an

experiment in which mice were given a memory-enhancing

drug, they experienced increased sensitivity to pain in

addition to better memory (Wolpe, p. 393). There are

many risks and unknowns that seem frightening. However,

continual improvement has yielded newer, increasingly

specific and safer drugs with fewer side-effects (Farah &

Wolpe, p. 41). For example, SSRIs used as antidepressants

are specific to mood (Farah & Wolpe, p. 41). They have

very good safety records and even exhibit neuroprotective

effects over the long term (Farah & Wolpe, p. 43).

Although some may have side effects, like Prozac causing

Erectile Dysfunction (ED), other specific drugs used in

conjunction can treat the side effects, like supplementing

Prozac with Viagra to treat ED (Farah & Wolpe, p. 41).

So long as research continues to reduce risk and Phase

Trials prove promising, enhancement will be increasingly

tolerable and acceptable.

Implicit coercion is another concern regarding

enhancement. Since enhancement could increase the

quality of executive functions, employers may be enticed

to hire individuals with greater skills and increased

efficiency while those who are not enhanced will be at a

disadvantage (Farah et al., 422; Farah, p. 1125). Thus,

there may be a feeling that if everyone else is enhancing

their brain, others will be left behind if they fail to do so.

Although decision-making should be free from coercion,

one should realize that self-improvement is commendable

in Western society and many religions even preach that it

is a person’s moral obligation to improve one’s self and

one’s children (Caplan, p. 105). Thus, there should be

policies created that minimize implicit coercion so that

individuals can exercise their freedom to choose based

on their values, free from coercion.

Although issues individuals face are important to

consider, so too are issues that society faces. Explicit

coercion may arise in the workplace or in the academic

arena. For example, employers could require employees

to enhance their efficiency through pharmacological

means in order to maintain their jobs; competitive

preparatory schools and universities may require their

students to enhance their cognitive functions so as to be

the most competitive institutions (Caplan, p. 104-5).

Although one can argue that the market-driven society is

competitive and promotes improvement, accepting the

possibility of explicit coercion is turning a blind eye to

ethics and acquiesces to the pressures contributing to

inequality (Caplan, p. 105; Dees, 2004, p. 952). Yet, one

cannot simply outlaw pharmacological enhancement

without infringing on personal freedoms and equality since

these same drugs used for enhancement would be allowed

for treatment (Farah et al., p. 423). Instead, it is important

to have laws and regulations extended to guarantee

individuals the right not to enhance themselves without

being discriminated in the social and economic sectors of

society. With proper laws and regulations to manage this

rising technology, society can help guarantee free choice

and fair access. This, too, is true when considering

distributive justice. Because access to drugs has a clear

economic factor, there tends to be an unequal distribution

of drugs among different socioeconomic classes (Farah

et al., p. 423; Farah, p. 1125). The cost barriers compound

the disadvantages of the lower class by restricting access.

We already live with inequalities in society where the upper

and middle classes can afford the latest advancements in

health, yet the government does not restrict access because



Vol. I, Issue 1

Spring 2005


of inequity (Farah et al., p. 423). Once again, society must

not deny enhancement because it is not equally accessible,

but rather address the gross inequalities of society due to

other factors and in turn grant fair access for all classes.

When considering how enhancement drugs affect

society, one must examine the possibility of creating more

lifestyle drugs. Pharmacological enhancement could

potentially raise the standards of being “normal” and

variants of human behavior could be medicalized (Flower,

p. 183). For example, if most people enhance their mood

by taking Prozac, then “happy” becomes “normal.” Thus

those who do not take Prozac and are not perfectly

“happy” are considered subnormal and medically “sick.”

In medicalizing human behavior, society changes the

“complaints of the healthy to the conditions of the sick”

and in doing so, alters the definitions of competence,

illness, mental health, and death, ultimately changing the

moral and legal understanding of accountability and

responsibility (Flower, p. 183). Imagine the impact this

would have on the criminal justice system. If committing

crimes are abnormal and this behavior is eliminated in

individuals who enhance, such behavior could potentially

be perceived as sickness and consequently, criminals may

not be held accountable for their actions. Although valid,

I contend that lifestyle drugs already exist (Ritalin in

academics and Viagra enhancing libido) as evident in a

$20 billion market (Hall, p. 65; Flower, 2004, p. 182).

Medicalization has already occurred with mild depression

and social anxiety. In fact, with medical advancement,

research for therapies leads to inevitable enhancement

and medicalization. Society welcomes advancement in

technology in which individuals are capable of adjusting

in such a dynamic society without terrible consequences.

Based on this, society will likely adjust accordingly in the

future when new pharmacological agents are introduced

as evidenced currently with Viagra and Ritalin.

Neuroscience and molecular biology are amazing

fields of study that hold great promise for future

pharmacological treatments. Ethical concerns about

morals, safety, personhood, coercion, distributive justice,

and the medicalization of the human condition are all

noteworthy and invaluable in this bioethical debate.

However, with the potential benefits of future and

developing drugs, the increasing selectivity that they exhibit,

the decreasing potential risk they pose, and the

consideration that we live in a competitive market-driven

society, enhancement is increasingly acceptable and will

likely be greeted with open arms—but not without some

skepticism. Furthermore, it is imperative to create

advisory and regulatory panels to devise regulations on

the ethical use of enhancement drugs and to decide which

ones are acceptable. Additionally, it is important to have

legislatures create laws that would limit any injustices or

coercion that might transpire. Furthermore, the criminal

justice system should continue to use pharmacological

enhancement with novel drugs but only on a voluntary

basis and as an alternative or supplement to incarceration.

Obviously, many additional questions arise in this

debate. For instance, what will be each party’s role (Farah

et al., p. 424)? Will physicians still act as gatekeepers? Will

parental consent uphold? How will employers and

educators be affected? Ultimately, further discussion is

necessary to answer these and other questions that arise

in this debate.

Acknowledgements

The author thanks the reviewers and editors for their

helpful comments and suggestions on a previous draft,

Paul R. Wolpe and Eric S. Hintz for their sponsorship,

and Kathleen M. Sullivan for comments and support.

References1. Caplan, A.L. (2003). Is Better Best? Scientific American, 289,

104-105.2. Dees, R.H. (2004). Slippery Slopes, Wonder Drugs, and Cosmetic

Neurology: The Neuroethics of Enhancement. Neurology, 63(6), 951-952.

3. Farah, M. J. (2002). Emerging Ethical Issues in Neuroscience.Nature Neuroscience, 5 (11), 1123-1129.

4. Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E.,King, P., Parens, E., Sahakian, B., & Wolpe, P.R. (2004).Neurocognitive Enhancement: What Can We Do and WhatShould We Do? Nature Reviews Neuroscience, 5, 421-425.

5. Farah, M.J. &Wolpe, P.R. (2004). Monitoring and ManipulatingBrain Function: New Neuroscience Technologies and TheirEthical Implications. Hastings Center Report, 34 (3), 35-45.

6. Flower, R. (2004). Lifestyle Drugs: Pharmacology and the SocialAgenda. TRENDS in Pharmacological Sciences, 25 (4), 182-185.

7. Hall, S.S. (2003). The Quest for a Smart Pill. Scientific American,289, 54-65.

8. Rose, S.P.R. (2002). ‘Smart Drugs:’ Do They Work? Are TheyEthical? Will They Be Legal? Nature Reviews Neuroscience,3, 975-979.

9. Turner, D.C., et al. (2003). Cognitive Enhancing Effects ofModafinil in Healthy Volunteers. Psychopharmacology, 165,260-269.

10. Wolpe, P.R. (2002). Treatment, Enhancement and the Ethicsof Neurotherapeutics. Brain and Cognition, 50, 387-395.




Vol. I, Issue 1

Spring 2005

Introduction

Scientists have progressed considerably in the practice

of research ethics since the mid-twentieth century. Not

only has there been an increased focus on obtaining the

participant’s voluntary, informed consent, there has also

been a concerted effort to avoid unnecessary risks and

obtain results offering benefit to the entire medical

community. Furthermore, the autonomy of the subject

has been consistently upheld, giving the subject the right

to discontinue participation in a study if he or she wishes.

While today’s prospective research subjects

undoubtedly enjoy more autonomy than those from the

past, investigators should be especially careful to protect

vulnerable and less autonomous populations like the

cognitively impaired elderly, especially those with dementia.

Anderson (2002) defines dementia as: “a progressive

organic mental disorder caused by…confusion,

disorientation, stupor, deterioration of intellectual capacity

and function, and impairment of control of memory,

judgment, and impulses” (p. 490). Alzheimer’s disease is

the most common type of dementia, affecting 70% of

dementia patients (Davis and Moreno, 2002).

Davis and Moreno (2002) note that: “most, if not

all, older subjects who are cognitively impaired…are unable

or unwilling to instigate a dialogue” (p. 24) if they are

hesitant about participating in a study. Since it may not

always be feasible to ascertain if a person with dementia

is capable of adequately consenting, approaching this

process ethically poses a challenge.

Ethical Concerns

Whereas the principle of autonomy has traditionally been

favored in the U.S. (Wolpe 1998), many forms of dementia

have such devastating effects upon an individual’s

intellectual capabilities that the autonomy model is

inappropriate. Davis and Moreno (2002) observe: “the

question becomes one of surrogacy for the consent to

participate in research” (p. 28). Beneficence, justice, and

nonmaleficence should therefore be applied in lieu of

autonomy when considering whether to perform research

on a subject with dementia. These principles can act as a

“check” to ensure that the subject’s best interests are met.

The principles of beneficence and justice hinder the

individual’s power to exercise his or her autonomy, as

healthcare providers have the power to change a patient’s

treatment if they feel such measures would benefit the

patient (Wolpe 1998). Public policy professionals can

influence the law and the development of clinical protocols

in order to preserve universal fairness. The former typifies

applied beneficence, whereas the latter illustrates applied

justice.

If the subject with dementia has not clearly outlined

his or her desires in the form of an advanced directive,

the decision-making power is abdicated to a proxy decision

maker. Proxies make decisions according to their beliefs

about what would be most beneficial for the patient’s well-

being. Sugarman, Cain, Wallace, and Welsh-Bohmer

(2001), for example, found that some proxies chose to

enroll the individuals for whom they were responsible in

clinical research studies because they felt it gave the

individual a greater measure of self-worth.

Nina Maria Mirarchi is a Junior at the University of Penn-

sylvania. She is concentrating in Bioethics in the Health

and Societies major, and she is minoring in French.

Ellen Foley, Ph.D. is the faculty sponsor for this submis-

sion. She is the Chair of the Health and Societies Depart-

ment at the University of Pennsylvania.

Address: 249 South 36th St., Philadelphia, PA 19104


Clinical Research on the Subject with Dementia:

Author: Nina M. Mirarchi, University of Pennsylvania

Faculty Sponsor: Ellen Foley, Ph.D.

Abstract

While today’s prospective research subjects

enjoy a greater measure of autonomy than those

from the past, investigators must continually strive

to protect vulnerable populations, especially

cognitively impaired older adults with dementia.

Investigators should respect the person’s autonomy,

while also considering the role of beneficence,

nonmaleficence, and justice. The study’s risks must

be weighed against the benefits, and researchers

should obtain their subjects’ informed consent. Since

competence and capacity tests do not always yield

conclusive assessments of cognitive function,

however, proxy decision-makers are sometimes

appointed. Such a framework is problematic. Not

only may proxy decision makers misinterpret the

subjects’ wishes, but they may also ignore them

altogether. In addition, some institutional review

boards have recently been criticized for failing to

protect research subjects. While various commissions

have addressed some bioethical concerns,

controversy remains over whether research on adults

with dementia is ethical given the vulnerability of

these subjects to exploitation.

Ethical Concerns and Research Regulation

Clinical Research on the Subject with Dementia



Vol. I, Issue 1

Spring 2005

The proxy could abuse his or her privilege of making

decisions on behalf of a cognitively impaired adult. If

abuse occurs, self-interested motives might be disguised

as applied beneficence. Sugarman, Cain, Wallace, and

Welsh-Bohmer (2001) conducted a study which

interviewed 49 proxies of Alzheimer’s patients to ascertain

their motives for enrolling the patients with Alzheimer’s

disease as participants in research studies.

Sugarman et al. (2001) reported that some proxies

stated that they had run out of treatment options, and

were therefore willing to try nearly any experimental

treatment. The proxies’ desperation to cure the disease

may lead them to neglect the person’s best interests

regarding treatment options. In such cases, it is crucial to

apply the principle of justice, or universal fairness, to

ensure that one does not exploit the participant in the

name of purportedly beneficent practice.

Regulatory measures such as institutional review

boards are designed to distinguish between self-interested

motives and genuinely altruistic ones. IRB’s are comprised

of professionals from various disciplines who meet once

a month to review the protocols of all research studies.

The IRB monitors the recruitment of volunteers as well

as the possible risks and benefits of the study for the

participants (Curry 2002).

Lastly, the principle of nonmaleficence safeguards

the volunteer from being exposed to research which could

inflict harm. One of the most efficient methods for

securing the non-maleficent clinical research on older

adults with dementia is to evaluate the degree of risk

involved in the proposed study.

Karlawish (2003) advocates for an increased level of

scrutiny, particularly towards research procedures not

designed directly to benefit the subject. In order to achieve

the goal of minimal risk exposure, Karlawish proposes a

risk assessment method which would allow proxy consent

only if the risks posed by the research are no more than

minimal and can be justified by the importance of the

knowledge to be gained. Such a formula would provide a

very concrete, objective standard for judging the degree

of risk.

Informed consent is not only an ethical issue, but a

legal one as well, since consent forms are considered legal

documents which may either allow or prohibit research.

The three main pillars of informed consent include:

voluntariness of the participant, full disclosure of

information to the participants by the researchers, and

degree of comprehension of the participants (Loue, 2002).

Federal guidelines mandate that the researchers

inform the potential subject and his or her proxy of the

research’s purpose, expected length, experimental

procedures involved, potential risks and benefits, and if

there are any alternative treatments available.

Furthermore, the researchers should explain to what degree

confidentiality rights will be protected, as well as

emphasizing that the subject is free to withdraw from the

study at any time if he or she chooses (Loue, 2003). These

measures are intended to remove any overtone of

coercion.

Of the three facets of informed consent, perhaps

the most difficult to evaluate in subjects with dementia is

comprehension, which comprises competence and

capacity. Loue (2003) defines competence as: “a legal

judgment relating to an individual’s ability to perform

specified functions, such as entering into a contract,

executing a will, or making decisions related to personal

care,” whereas capacity is defined as: “an individual’s

decision-making ability” (p. 4).

Kim, Caine, Currier, Leibovici, and Ryan (2001)

assessed the competence of individuals with Alzheimer’s

disease in providing consent for participation in research.

The researchers compared the capacity of 37 subjects

with mild-to-moderate Alzheimer’s disease with 15 elderly

subjects without Alzheimer’s disease in giving consent to

research in a hypothetical study. They found that 62%

of the mildly to moderately impaired Alzheimer’s disease

group were rated as incapacitated on at least one decision-

making ability. By contrast, the control group of older

adults performed the same task with ease. This illustrates

that Alzheimer’s disease does indeed pose an obstacle to

full comprehension.

Research Regulation

The foundation of research ethics can be traced to the

drafting of the Nuremberg Code in the 1940s, followed

by Declaration of Helsinki in 1964. Together, these codes

sought to prevent future abuses of research participants’

rights, especially given the atrocities that occurred under

the Nazi regime during World War II.

Many research regulations were revised ten years after

the Declaration of Helsinki. According to Kapp (2002),

the following 1974 milestones advanced the field of

research ethics: 1.Department of Health, Education, and

Welfare (DHEW) policy making institutional review boards

(IRBs) official and 2. The passage of the congressional

National Research Act.

The latter milestone established the National

Commission for the Protection of Human Subjects of

Biomedical and Behavioral Research, also known as the

Belmont Commission. Issued in March of 1978, The

Belmont Report addressed some ethical issues surrounding

research on patients with cognitive impairments. Namely,

it dealt with issues surrounding autonomy and informed

consent.

One of the most significant accomplishments was

the Commission’s establishment of four distinct categories

of research subjects: “those able to give informed consent,

those unable to give informed consent but nonetheless




Vol. I, Issue 1

Spring 2005

able to “assent” (capable of understanding the procedure,

the right to withdraw, and the choice to participate), those

unable to consent or assent but who do not object to

participation, and, finally, those who object to participation”

(Bonnie, 1997). This development eliminated the previous

dichotomy of labeling subjects as either fully competent

or fully incompetent.

In 1997, Bonnie concluded that protection of

cognitively impaired adults in research studies was

fundamentally flawed, claiming that regulatory practice

relied too deeply on the consciences of the principal

investigators and the whims of a study’s IRB rather than

national standards. Some other criticisms include: the

belief that some IRBs spend more time on writing

informed consent forms than supervising the consent

process, the inadequacy of resources and training for IRB

members, and the presence of conflicts of interest between

IRB members and affiliate organizations (Kapp, 2002).

The possibility of conflicts of interest is an especially

troubling concern, for it diminishes the objectivity of

research regulation.

However, protection of subjects with dementia has

improved significantly since 1997. In his review of

research regulation, Kapp (2002) noted that many groups

have developed and implemented revised research

guidelines for the protection of research participants with

diminished capacity. These include the American College

of Physicians, the Council of Europe, the British Medical

Research Council, the American Psychiatric Association,

and the National Institutes of Health.

The Alzheimer’s Association has also issued a

statement on subject protection. While they believe

Alzheimer’s patients should not be excluded from research

studies, they stress the importance of minimal risk, proxy

consent when necessary, and only enrolling subjects in

studies with greater than minimal risk if the subject is

capable of giving his own consent or if he has previously

consented in a research-specific advanced directive (Loue,

2002).

Bernstein and Weiner (1996, p. 268-269) admit that

sometimes some studies seeking to explore the

pathogenesis and clinical outcomes of a disease offer no

therapeutic benefit to the research subject. In phase 1

studies, investigators administer medication to the subject

in small doses, gradually increasing the dosage to test for

the drug’s toxicity.

In such cases, there is a potential for a tremendous

amount of benefit on many levels. If a new drug is

developed as a result of research, the researchers and

institution gain recognition, while the drug companies

amass profit. The research subject, however, gains no

direct benefit from his or her participation save the

fulfillment of altruistic motives.

Such a phenomenon whereby the benefit of research

unduly favors the interests of the researchers rather than

the subjects may be considered a “conspiracy of silence.”

If the proxy decision makers or the subjects themselves

were consistently informed that phase 1 studies offer no

therapeutic benefits, one would presume that enrollment

in such studies would sharply decline.

Ostensibly, the issue of clinical research on cognitively

impaired older adults is controversial. The main conflicts

hinge on whether or not cognitively impaired adults are

capable of adequately consenting, and, if not, whether

proxy decision makers are capable of offering substituted

judgment for the prospective subjects. In addition, there

is a dearth of regulatory oversight in the form of

educating proxy decision-makers about the informed

consent process.

Kapp (2002) concludes that excluding older adults

with mental impairments from the participant pool would

unfairly limit research, a process that is necessary for

clinical medicine to advance. However, Kapp also

acknowledges the value of protecting the rights of those

who are unable to protect themselves. Indeed, the

interaction among ethical principles is complex in the case

of research on those with dementia, especially since a

cure for Alzheimer’s can only materialize after scientists

perform extensive clinical research.

I therefore conclude that research on cognitively

impaired adults will continue, perhaps even increase, in

the coming decades. While some level of corruption in

the form of conflicts of interest may be inevitable under

the bureaucratic framework of an institutional review

board, I propose that it is not altogether impossible to

reduce. Furthermore, proxy decision makers should

receive more guidance from the medical and legal

professions as to how to weigh a subject’s interest, as the

crux of the debate over research on participants with

dementia centers around the judgments of these

individuals.

References1. Anderson, K. (Ed.). (2002). Mosby’s Medical, Nursing, and

Allied Health Dictionary (6th ed.). St. Louis: Mosby.2. Bernstein, B.E., & Weiner, M.F. (1996). Legal and ethical aspects

of dementia. In Weiner, M.F. (Ed.), The Dementias: Diagnosis,management, and research (2nd ed., pp.251-271). Washington,D.C.: American Psychiatric Press.

3. Bonnie, R.J. (1997). Research with cognitively impairedsubjects: Unfinished business in the regulation of humanresearch. Archives of General Psychiatry, 54(2), 105-111.

4. Curry, L. (2002). Ethics and legal considerations in healthservices research. In M.B. Kapp (Ed.), Ethics, aging, and lawreview: Vol. 8. Isssues in conducting research with and aboutolder persons (pp. 57-75). New York: Springer PublishingCompany.

5. Davis, W.S. & Moreno, J.D. (2002). Decisional capacity andconsent for research in older adults who are cognitivelyimpaired. In M.B. Kapp (Ed.), Ethics, aging, and law review:Vol. 8. Isssues in conducting research with and about olderpersons (pp. 19-38). New York: Springer Publishing Company.




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6. Kapp, M.B. (2002). Regulating research for those with decisionalimpairment: implications for mental health professionals. InM.B. Kapp (Ed.), Ethics, aging, and law review: Vol. 8. Isssuesin conducting research with and about older persons (pp. 77-99). New York: Springer Publishing Company.

7. Karlawish, J.H.T. (2003). Research involving cognitivelyimpaired adults. The New England Journal of Medicine,348(14), 1389-1392.

8. Kim, S.Y., Caine, E.D., Currier, G.W., Leibovici, A., & Ryan, J.M.(2001). Assessing the competence of persons with Alzheimer’sDisease in providing consent for participation in research.American Journal of Psychology, 155(5), 712-717.

9. Loue, S. (2002). Ethical issues in informed consent in theconduct of research with aging persons. In M.B. Kapp (Ed.),Ethics, aging, and law review: Vol. 8. Isssues in conductingresearch with and about older persons (pp. 3-17). New York:Springer Publishing Company.

10. Sugarman, J., Cain, C., Wallace, R., & Welsh-Bohmer, K.A.(2001). How proxies make decisions about research for patientswith Alzheimer’s Disease. Journal of the American GeriatricsSociety, 49(8), 1110-1118.

11. Wolpe, P.R. (1998). The Triumph of Autonomy in AmericanMedical Ethics. In R. DeVries & H. Subedi (Eds.), Bioethicsand Society: Sociological Investigations of the Enterprise ofBioethics (pp. 38-59). New York: Prentice Hall.




Vol. I, Issue 1

Spring 2005

In 1981, John Hinckley Jr. shot President Reagan

and five other people in what was apparently an attempt

to impress actress Jodie Foster. One year later, he was

brought to trial and pleaded not guilty by reason of insanity

(NGRI). As part of his insanity defense, Hinckley’s

lawyers petitioned the judge to introduce a computed

tomography (CT) scan that showed a “widening” of sulci

in Hinckley’s brain in support of a diagnosis of

schizophrenia (Kulynych, 1997, p. 1252). In doing so,

they aimed to prove that Hinckley had a mental illness

that impaired his ability to distinguish right from wrong

and, in effect, absolved him of criminal responsibility for

his violent actions (Dumit, 1999, p. 174).

U.S. v. Hinckley represents the first high-profile case

involving neuroimaging evidence. Over the last twenty-

five years, neuroimages have increasingly been used in

expert testimony to support psychiatric diagnoses. Neither

the legal system nor the scientific community recognizes

an association between insanity and abnormal brain

activity. Even so, as asserted by Beaulieu, “the argument

that ‘it’s all in the brain’ hardly raises an eyebrow anymore”

(2003, p. 516). Furthermore, employing neuroimages as

“evidence” of defendants’ insanity is typically found to

be “very persuasive” by jurors (Kulynych 1997, p. 1253).

Consequently, there is an ongoing legal controversy as to

the proper standards for admitting neuroimaging evidence

into court proceedings. Do the prejudicial effects

associated with neuroimaging evidence outweigh its

probative value such that it is ethically acceptable to

withhold it from jurors? With respect to the continuing

debate, this essay aims to describe how jurors interpret

neuroimaging evidence and why this presents the American

criminal justice system with a major problem. It advances

the argument that, given the high potential for misuse of

this type of evidence, the visual aspects of brain images

should be banned from courtrooms.

In recent years, neuroimaging evidence has become

a tool of defense attorneys in death penalty cases.

Neuroimages are often used in trials in which lawyers are

arguing that their clients are not guilty of capital offenses

by reason of insanity (PCB Staff, 2004). While it is true

that defendants do not frequently enter NGRI pleas, when

the insanity defense has been raised, neuroimages have

increasingly been introduced during psychiatric testimony

as evidence of mental disorder (see People v. Weinstein,

McNamara v. Borg , U.S. v. Hinckley). This raises the

fundamental question: Why would defense lawyers assume

that jurors will believe that brain images can show them

something about diseases of the mind?

In large part, Americans’ acceptance of the use of

neuroimaging evidence in psychiatric testimony stems

from the recent popularization of the biological model

of the mind. Over the past decade, the press’s coverage

of advances in brain imaging has served to create the

impression that technology is now capable of mapping

aspects of the mind to the functioning of specific

structures/networks in the brain. Given that articles in

major publications such as the New York Times, Newsweek,

and Time have been steeped with statements that equate

brain activity and mental processes (see Jensen, 1999;

Lemonick, 1995; Begley, 1992), it is not surprising that

Bridget Pratt is a Senior at Haverford College and is ma-

joring in Biology.


Karl Johnson, Ph.D. is the faculty sponsor for this submis-

sion. He is an Associate Professor of Biology at Haverford

College.

Address: 370 Lancaster Ave. Haverford, PA 19041


“Soft” Science in the Courtroom?:

Author: Bridget Pratt, Haverford College

Faculty Sponsor: Karl Johnson, Ph.D.

Abstract

There is an ongoing debate regarding the proper

standards for admitting neuroimaging evidence into

legal proceedings. At present, neuroimages are

increasingly being introduced as part of psychiatric

testimony. In courtrooms, however, the idea that

two visibly different brain scans offer proof of insanity

has become increasingly conventional. This becomes

a problem for the criminal justice system because by

understanding neuroimaging evidence in such a

manner, jurors fundamentally misinterpret it.

Furthermore, given the mechanical objectivity

associated with neuroimages, jurors' erroneous

inferences are then afforded undue weight in their

assessments of defendants' mental states. Lawyers

are now able to convey that their clients weren't

rational when they committed their crimes simply

by showing jurors two dissimilar neuroimages. In

order to mitigate the prejudicial effects of such

evidence, it is, therefore, imperative that a new

neuroimaging evidence admissibility standard be

adopted by the American legal system.

The Effects of Admitting Neuroimaging Evidence into

Legal Proceedings



Vol. I, Issue 1

Spring 2005

“Soft” Science in the Courtroom?

the idea that the mind has a biological basis has become

deeply rooted in American culture.

The popular conception that the mind = the brain

has, in turn, affected society’s understanding of mental

disorder. With the help of the media, the idea that the

mind has a biological basis has effectively given rise to

the prevailing paradigm of mental disorder, which defines

mental illness as a dysfunction of brain physiology (Olsen,

2000, p. 413). Inherent in the biological model of mental

disorder is the notion that if a person truly has a diseased

mind, s/he will also have some sort of visible aberration(s)

in brain structure and/or functioning. Since the news

media has painted neuroimaging as the key to “brain

mapping,” it has presented new imaging technologies to

the public as the main tools for identifying the presence

of these brain abnormalities (Begley, 1992). In addition,

the press has created the impression that diagnoses of

mental illness can be made by comparing an individual’s

brain scan to a “normal” brain scan. The brain images in

magazines and scientific articles are typically presented

with simple captions and selected because they represent

extreme examples (i.e., images that look the most different

from each other) (Dumit, 2004, p. 96). Thus, the

neuroimages that people usually encounter are those found

in illustrations consisting of a pair of extreme images

labeled with captions that describe the brains as “normal”

and, for example, “schizophrenic” (Dumit, 2004, p. 97).

Such publication practices invite readers to conclude that

the comparison of two neuroimages can be used to

diagnose specific kinds of mental disorders. In this way,

consistent exposure to such pictures in the news media

has led people to believe that if an individual’s brain image

is visibly different from a “normal” individual’s brain

image, s/he does not have a normal brain-type and,

therefore, has a mental disorder.

Given that popular portrayals and everyday speech

consistently reiterate that mental illness implies insanity,

people have come to view mental disorder and insanity as

analogous labels (Wahl 1995, p. 21). As a result, the public

often makes the mistaken leap in logic that evidence of

mental illness is evidence of insanity (Dumit 1999, p. 183).

In light of this assumption, the notion that two visibly

different neuroimages offer proof of insanity has become

increasingly popular. Americans have developed a cultural

conception of what mental disease looks like and, in effect,

the instance of two dissimilar neuroimages has become

an iconic image from which the implication of insanity is

immediately understood. As a result, lawyers are now

able to convey that their client wasn’t rational when s/he

committed his/her crime simply by showing the jury two

images—a defendant’s ‘abnormal’ brain scan and a

“normal” brain scan. Based on this “evidence,” jurors

easily infer that the defendant’s brain functions differently

than a ‘normal’ person’s brain. There is no longer any

need for an expert witness to say that the images offer

proof of mental illness or insanity. Jurors know what the

presentation of such images means, as the message that

an abnormal brain = insanity is implicit in the images

themselves.

In light of what the public believes, the more

important question then becomes: Can neuroimages

actually prove that defendants are insane? At present,

the resounding answer from the scientific community is

NO! By interpreting neuroimaging evidence as objective

proof of defendants’ insanity, jurors make two key errors:

1) assuming that diagnoses of mental illness can be made

on the basis of brain images alone and 2) assuming that

all people with mental disorders are insane. While

neuroimages do, in fact, aid in the diagnostic process, to

date, no studies have established a causative relationship

between specific abnormalities in brain structure/

functioning and particular mental illnesses (Dumit 2004,

p. 111). As a result, the diagnosis of mental disorder

cannot be made solely on the basis of neuroimages. In

addition, whether or not defendants have a mental illness

is often irrelevant to their capacity to distinguish right

from wrong. Everyone with a mental disorder is not, by

definition, legally insane (Reeves et al. 2003, p. 94). Thus,

despite what the public has come to believe, neuroimages

cannot offer proof of either a defendant’s mental illness

or his/her insanity.†

Even so, this does not necessarily constitute an ethical

dilemma for the criminal justice system. So jurors

misinterpret some evidence. So what? They hear a lot

of testimony from both sides during trials. Why does it

matter that they misunderstand one specific piece of

evidence? In short, what turns jurors’ erroneous

interpretation of neuroimaging evidence into a problem

is their tendency to give it undue weight in their assessments

of defendants’ mental states. In allowing neuroimaging

evidence to be shown to juries, the legal system runs the

risk of biasing jurors towards finding defendants not guilty

by reason of insanity (NGRI).

In court, imaging evidence is given undue importance

and credibility because it is a form of scientific evidence.

As with most forms of scientific evidence, neuroimages

derive significant power from the mechanical objectivity

that the public associates with the technologies that generate

them. With respect to brain imaging, mechanical objectivity

refers to the idea that neuroimaging technologies can

†

Under the M’Naughten Rule, legal insanity is defined as the

inability to distinguish right from wrong. As noted by Kulynych

(1997), current neuroimaging techniques aren’t sophisticated

enough to demonstrate the existence of such cognitive

impairments. No neuroimaging research to date has shown that

specific brain abnormalities can cause this type of impairment

and, thus, brain scans cannot be used to diagnose insanity under

current legal tests.



Vol. I, Issue 1

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“Soft” Science in the Courtroom?

generate images that automatically represent the brain in

a way that bypasses the unreliability of human intervention

(Beaulieu 2000, p. 45). Since neuroimages are generated

by “reliable” methods, jury members presume that they

directly and impartially represent brain structure or activity.

This becomes a problem because jurors often fail to

distinguish between the data produced by imaging

technologies and their “soft” science interpretation (i.e.,

what the images suggest about defendants’ mental states)

(Kulynych 1997, p. 1259). Accordingly, given that jurors

view neuroimages as snapshots of the brain in action,

they also consider their erroneous evaluation of what two

pieces of neuroimaging evidence show (i.e., proof of

insanity) to be hard, scientific fact. Consequently, they

tend to place a high degree of certainty on these

conclusions, which biases them towards finding defendants

NGRI.

Nevertheless, jurors’ tendency to attach undue

credibility to their interpretation of neuroimaging evidence

doesn’t represent the only way that neuroimages’

prejudicial effects present a danger to the legal system.

In buying into the popular conception that an abnormal

brain scan implies insanity, jurors also open themselves

up to being exploited by lawyers. Although proof derived

from scientific methods is often viewed as being objective,

neuroimaging technologies do not necessarily bypass the

unreliability of human intervention. Due to the lack of

standardization amongst imaging protocols, steps in the

data analysis process can easily be manipulated to generate

a neuroimage that gives the illusion of striking differences

(relative to a “normal” brain scan) to a jury (Reeves et al.

2003, p. 90). By applying certain coloring schemes, for

example, technicians can make even closely similar

brainsets appear dissimilar and, thereby carry out data set

processing such that the resultant neuroimages look visibly

different (Dumit 2004, p. 91).

With neuroimaging technologies, there comes the

potential to manipulate the analysis of data in order to

generate brain images that resemble cultural stereotypes

of what insanity looks like. Despite appearing to be

objective photographs of the ‘truth,’ neuroimages can, in

reality, be purposefully made to appear visibly different

so that lawyers can use them to substantiate their subjective

arguments about their clients’ mental states. Neuroimaging

evidence can, therefore, be intentionally employed by

lawyers to get defendants admitted to mental hospitals

rather than to death row. In this way, allowing such

evidence to be introduced into legal proceedings creates

the risk that jurors will be misled in ways that subvert the

evidentiary process. Furthermore, these prejudicial effects

invite individuals to enter NGRI pleas. Although the

insanity defense is not raised very frequently at present,

given the capacity for neuroimaging evidence to bias

jurors’ assessments of defendants’ mental states, it is likely

that we will see a increasing number of NGRI pleas

entered in future court cases unless the visual aspects of

this type of evidence are deemed inadmissible.

In order to minimize the likelihood of undue prejudice

affecting jurors’ evaluations of defendants’ mental states,

the American legal system must adopt a new admissibility

standard for neuroimaging evidence. The new admissibility

test should disallow the presentation of neuroimages to

juries during psychiatric testimony and, instead, only permit

expert witnesses to give verbal descriptions of what the

images show. As part of this test, such verbal descriptions

should be subject to a “social framework” form of

evidence management. According to Kulynych, this would

require that judges inform juries what inferences drawn

from neuroimages can be supported by current research

so that jurors will have an empirical “framework” with

which to evaluate the validity of subsequent psychiatric

testimony (1997, p. 1269). Judges would, therefore, likely

instruct juries that research findings do not support

extrapolating diagnoses of mental illnesses let alone insanity

from PET or fMRI scans. In doing so, the weight that

jurors place on experts’ subsequent claims that

neuroimages offer proof of insanity will be reduced. Thus,

by banning lawyers from showing juries neuroimages and

having judges provide jurors with an empirical

“framework,” this new admissibility standard will make

neuroimaging evidence appear less like objective snapshots

of insanity. In effect, the criminal justice system will

increase the chance that the jurors’ assessments of

defendants’ mental states will be more accurate.

References1. Beaulieu, A. (2003). Brains, maps and the new territory of

psychology. Theory & Psychology, 13, 561-568.2. Beaulieu, A. (2000). The brain at the end of the rainbow: The

promises of brain scans in the research field and in the media.In J. Marchessault & K. Sawchuk (Eds.), Wild science: Readingfeminism, medicine, and the media (pp. 39-52). New York:Rutledge.

3. Begley, S. (1992, April 20). Mapping the brain. Newsweek.4. Dumit, J. (2004). Picturing personhood: Brain scans and

biomedical identity. Princeton: Princeton University Press.5. Dumit, J. (1999). Objective brains, prejudicial images. Science

in Context, 12, 173-201.6. Jensen, J. (1999, May 22). Mapping thoughts and even feelings.

New York Times, p. B9.7. Kulynych, J. (1997). Psychiatric neuroimaging research: A high-

tech crystal ball? Stanford Law Review, 49, 1249-1270.8. Lemonick, M.D. (1995, July 17). Glimpses of the mind. Time.

Retrieved October 12th, 2004, from http://www.time.com/time/classroom/psych/unit3_article1.html

9. Olsen, D.P. (2000). Policy implications of the biological modelof mental disorder. Nursing Ethics, 7, 212-224.

10. President’s Council on Bioethics Staff. (2004, September). Anoverview of the impact of neuroscience evidence in criminallaw. Retrieved November 4th, 2004, from The President’s Councilon Bioethics Online: http://www.bioethics.gov/background/neuroscience_evidence.html

11. Reeves, D., Mills, M.J., Billick, S.B., & Brodie, J.D. (2003).Limitations of brain imaging in forensic psychiatry. Journal ofthe American Academy of Psychiatry and the Law, 31, 89-96.

12. Wahl, O.F. (1995). Media madness: Public images of mentalillness. New Brunswick, NJ: Rutgers University Press.




Vol. I, Issue 1

Spring 2005

The subjects of euthanasia and physician-assisted

suicide (PAS) serve as controversial topics, not only in

the United States, but all around the world. Euthanasia,

defined as “the hastening of death of a patient to prevent

further sufferings”, has different forms. These include:

voluntary euthanasia, which implies the patient has given

consent; involuntary euthanasia, where at the time of

euthanasia, the patient, though competent and able to make

decisions, is not consulted; and non-voluntary euthanasia,

in which the patient is not able to make decisions at the

time of euthanasia (Chao, Chan & Chan, 129). In addition,

active euthanasia involves an actual act towards death,

such as the injection of a lethal drug, whereas passive

euthanasia entails the omission of an act, for example,

withdrawing from treatment (Chao, Chan & Chan, 130).

Physician-assisted suicide involves the physician providing

a means in which a patient can end his life, usually via a

prescription of a lethal drug that the patient can administer

himself (Chao, Chan & Chan, 130). “Patients are experts

about their own lives and their psychosocial-spiritual

circumstances, and so contribute to collaborative decision

making by expressing personal preferences, beliefs and

values. In the context of a physician-patient partnership,

patients may veto recommended but unwanted treatment,

and physicians may veto (and not even disclose or discuss)

overly harmful, futile, or useless treatments and

procedures” (Davis, Davis, Smith & Cooper, 3787). Many

arguments, both positive and negative, have surfaced

concerning how the discussion of euthanasia and physician-

assisted suicide affect the doctor-patient relationship.

Quality of Doctor-Patient Relationship Increased

with Open Discussion of Euthanasia and PAS

The quality of the doctor-patient relationship does

not rest on a doctor’s willingness to provide a lethal

prescription, but rather on his willingness to discuss the

matter openly, and develop a trustworthy, comforting

relationship. According to Ganzini et al. (2001), as a result

of Oregon’s 1997 enacting of the Death with Dignity

Act, “a much larger proportion of physicians discussed

assisted suicide or the Death with Dignity Act with patients.

Physicians perceived that more patients found these

conversations helpful than upsetting.” In general, doctors

feel that as a corollary of this act and its resulting

conversations, they have “made efforts to improve their

ability to care for these patients” (2368). However,

whether or not euthanasia and PAS are legalized, studies

have shown that many dying patients found comfort in

discussing these options with physicians. Many patients

surveyed concluded that when he or she “encountered a

clinician who was willing to discuss PAS, they felt able to

disclose many concerns about dying” (Back et al., 1259).

One family member of a patient stated that all she wanted

was “‘another sane adult’ who could ‘talk in terms…that

removed the taboo from the process’ by giving ‘a real,

clear picture of possible approaches without advocating

[PAS]’” (Back et al., 1260). In addition, once patients

found they were able to discuss this topic with the

physician, the value of clinician openness evolved. The

patient then felt comfortable inquiring about other worries,

fears and vulnerabilities concerning his or her illness and

imminent death (Back et al., 1260). This is often more

important to the patient than actually receiving a

prescription. In matters of mortality, doctors are often

Nadine Spigel is a freshman at the University of Pennsyl-

vania and is a Nursing major.







19104


Euthanasia and Physician Assisted Suicide:

Author: Nadine Spigel, University of Pennsylvania

Faculty Sponsor: Paul R. Wolpe, Ph.D.

Abstract

The subjects of euthanasia and physician-assisted

suicide (PAS) serve as controversial topics, not only

in the United States, but all around the world.

Euthanasia, defined as “the hastening of death of a

patient to prevent further sufferings,” has different

forms. These include: voluntary euthanasia,

involuntary euthanasia, and non-voluntary

euthanasia, as well as active and passive euthanasia.

Physician-assisted suicide involves the physician

providing a means in which a patient can end his

life. Many arguments, both positive and negative,

have surfaced concerning how the discussion of

euthanasia and physician-assisted suicide effect the

doctor-patient relationship. Upon examining both

sides closely, the open discussion of euthanasia and

patient-assisted suicide between the doctor and

patient is beneficial, as it will improve both the doctor-

patient relationship, as well as the quality of care

the doctor is able to provide for the patient.

Effect on the Doctor-Patient Relationship

EUTHANASIA AND PHYSICIAN ASSISTED SUICIDE



Vol. I, Issue 1

Spring 2005

the people to whom patients want to turn to for comfort

when worrying about medical conditions and their death

(Van Leeuwen & Kimsma, 159). By ensuring confidential

and non-restrained communication, trust is built, and the

patient becomes more willing to discuss all alternatives

with the doctor, as well as inquire about any concerns or

fears about the dying process, which would have been

uncomfortable to discuss previously. Many times, when

the pain is adequately treated, “both depression and suicidal

ideation diminish, as well as interest in a hastened death”

(Jamison, 422). The open discussion of euthanasia and

PAS has a significantly positive impact on the physician-

patient relationship, and with the increased trust, the doctor

is more able to serve as a means of support for both the

patient and family.

Negative Effects Occur When Doctors Refuse to

Discuss Euthanasia and PAS

Conversely, others stated that when a physician

seemed unwilling to discuss the subject of euthanasia and

PAS, they felt limited in the questions they could ask, thus

hindering the doctor-patient relationship. One patient wept

during her interview as she recalled frustrations with her

physician: “You’re trying to get a doctor to sit down and

listen to you…but they never, ever get the overall picture.”

Because of her doctor’s unwillingness to discuss PAS, he

also “missed opportunities to connect with this patient’s

deepest concerns, which included her quality of life, her

prognosis, and her suffering” (Back et al., 1262). By

refusing to discuss euthanasia and PAS with patients,

doctors put themselves at a disadvantage in that the patient

no longer trusts the doctor and a communication barrier

is implemented. “Persistent thoughts of death are often

correlated with unresolved clinical depression or pain or

both, as well as lack of family or social support” (Jamison,

425). The doctor, unable to realize the underlying reasons

for inquiry of euthanasia, cannot help or support the patient

in his or her time of need, and may inadvertently increase

the overall suffering of the patient. This, in turn, further

weakens the doctor-patient relationship.

Quality of Doctor-Patient Relationship Decreased

with Open Discussion of Euthanasia and PAS

Another side to this argument states that by openly

discussing the practice of euthanasia and PAS, the doctor-

patient relationship deteriorates. By allowing the discussion

to take place, the patient is allotted too much autonomic

power. Davis et al. asserts that “physician judgment based

on knowledge, expertise, skill, and practical wisdom will

be subservient to patient desires and demands. The

physician-patient relationship, built on mutuality,

reciprocity, and respect, will falter” (Davis, Davis, Smith

& Cooper, 3787). It is known that some physicians already

secretly participate in euthanasia or PAS, and as a result

many fear that having the topic open for discussion will

induce the idea of a ‘slippery slope’, leading to more

frequent occurrences. This can put the doctor in an

uncomfortable situation, as patients may be more apt to

challenge his authority and demand a prescription,

overstepping the boundaries set forth by the principle of

autonomy.

This slippery slope, aside from undermining the

physician’s authority, would ultimately lead to less trusting

relationships between the patient and the doctor: “If a

physician could save a life and, on the other hand, could

end a life, it would create ambiguity in the duty of the

physician” (Chao, Chan & Chan, 132). In a study

conducted by Ezekiel J. Emanuel, almost half the patients

surveyed felt that euthanasia and PAS would “disrupt the

trust necessary for the physician-patient relationship and

generate psychological distress, not reassurance” (Emanuel,

330). Because physicians play such an active role in

introducing and influencing health care decisions, patients

rely on physicians when “fear, lack of information,

unfamiliarity and other factors limit their independence

and authority”(Lorenz & Lynn, 2282). Doctors’ personal

views of euthanasia could interfere with the doctor-patient

relationship. Patients often reported that the topic of

PAS “provoked a strong emotional response from the

clinicians that made further conversation awkward” (Back

et al, 1258). As discussed earlier, this situation puts both

the doctor and patient at a disadvantage, as the relationship

is strained. Should the doctor advocate its use too strongly,

the patient will doubt the physician’s intentions for

treatment, and fear involuntary euthanasia. Patients’ fears

concerning the discussion of euthanasia and PAS, stemming

from the potentials of the ‘slippery slope’, prove to be

legitimate, as these problems have arisen in the past. The

most recent case of doctors’ abuse of power occurred in

the 1990s, when Dr. Kevorkian “escalated his practice

from assisted suicide to direct killing” and even went so

far as to film the procedure, later allowing the video to be

shown on national television (Chao, Chan & Chan, 129).

Upon hearing a physician advocate euthanasia, one cannot

help but let his or her mind wander to this horrifying

incident, and wonder if his or her doctor secretly shares

his same views. Discussion of euthanasia elicits fear in

patients, especially during a time of such vulnerability,

ultimately resulting in a less trusting and weaker relationship

with the physician.

How to Counter Some Concerns of the Negative

Effect of Discussion

Some of the concerns described by patients can be

regulated by implementing recommended guidelines for

the physician to follow when engaging in such conversations.

The physician must be able to effectively evaluate the

conversation, as well as direct it appropriately. He can do

EUTHANASIA AND PHYSICIAN ASSISTED SUICIDE



Vol. I, Issue 1

Spring 2005

so by asking both himself and the patient specific questions

upon the patient’s mention of a hastened death. Some

of these helpful questions should include:

Why is this patient asking for help? Why is the patient

expressing this desire at the present time? Is the

request understandable given the patients’ physical

condition and quality of life? Do the patient’s

expressed motives provide for treatment responses

that better serve his or her needs? Does the patient

actually want to die, or is he or she using the request

for some other purpose? (Jamison, 419).

By having a set list of questions and issues to be aware

of, the prepared clinician can react to the patient in the

most appropriate manor. At the same time the doctor

must put personal feelings aside and remember to express

a non-biased perspective, so that the patient does not feel

excess anxiety upon participating in the discussion, thus

weakening the physician-patient relationship. In order to

ease patients’ fears of the doctor and establish the best

physician-patient relationship possible, clinicians must be:

willing to understand a patient on his or her own

ground—as a person who is facing the reality of

death. It includes the tasks of listening deeply,

showing genuine concern, and respecting the patient’s

journey, whatever his or her ultimate decision. Only

then can a clinician truly work with such a patient in

an attempt to alleviate or mitigate possible physiological

and psychological suffering that may underpin the

patient’s decision. It is by facing these life and death

issues from within the physician-patient relationship

that the true skills and ethical values of clinicians are

put to the test and proven. (Jamison, 426)

The doctor must be confident in discussing such issues

with patients, as a direct relationship exists between the

comfort of a doctor to the comfort of the patient. In

addition, the doctor should be prepared, upon sensing an

uncomfortable patient, to move the conversation in a

different direction, discussing alternatives and evaluation

of the patient’s individual situation. By having these, or

similar policies established, the clinician is more adamantly

equipped to address such a delicate issue, and use

communication as a tool to focus on the underlying issues,

while at the same time putting the patient at ease.

Conclusion

When dealing with the discussions of either euthanasia

or physician-assisted suicide, the following conclusions

come to mind: the physician-doctor relationship

strengthens when the patient brings up the subject on his

or her own, and the doctor is willing to discuss the option

in a non-biased manner. By making the discussion a

comfortable topic, the doctor will then be able to

understand the roots of the patient’s concerns. A higher

level of trust is established, the patient feels more confident

in the doctor and gains more support, while the doctor is

able to better understand the patient and treat him more

adequately. Often times, patients discuss hastening his or

her death because of clinical depression, fear of intolerable

pain and suffering, or fear of being a financial burden on

the surviving family. If the doctor takes the time to talk

with the patient, establishing an environment conducive

to open discussion, these issues have the opportunity to

surface, and options to alleviate concerns may be

addressed.

The relationship, however, is weakened when the

doctor refuses to discuss the matter altogether, or strongly

advocates for one side. As mentioned above, a physician

exhibiting a strong bias weakens the relationship by either

putting the patient in an uncomfortable situation in which

he or she feels unable to reveal all concerns regarding his

or her illness and impending death, or by causing fear in

the patient, who may then question the physician’s intent

when advocating certain treatment options. Ultimately,

as long as conversed in a professional, non-biased manner,

the open discussion of euthanasia and physician-assisted

suicide benefits the doctor-patient relationship, as the

patient gains trust, and the doctor gains a higher level of

understanding.

References1. Back, Anthony L., MD; Starks, Helene, MPH; Hsu, Clarissa, PhD;

Gordon, Judith R., PhD; Bharucha, Ashok, MD; and Pearlman,Robert A., MD, MPH (2002). “Clinician-Patient InteractionsAbout Requests for Physician-Assisted Suicide: A Patient andFamily View”. The Journal of the American Medical Association.Vol. 162, p. 1257-64. Retrieved October 23, 2004, from<www.archinternmed.com>

2. Chao, DVK; Chan, NY; and Chan WY (2002). “Euthanasiarevisited”. Family Practice. Great Britian: Oxford University Press.19(2) p. 128-34.

3. Davis, Mellar P.; Davis, Deborah Doan; Smith, Martin L.; andCooper, Kathleen (2001). “Just Whose Autonomy Is It?” Journalof Clinical Oncology. 19(17) p. 3787-89. Retrieved October23, 2004, from <http://www.jco.org>

4. Emanuel, Ezekiel J (1999). “What is the Great Benefit ofLegalizing Euthanasia or Physician-Assisted Suicide?” Ethics.Chicago: University of Chicago Press. 109(3) p. 629-35.

5. Ganzini, Linda, MD; Nelson, Heidi D., MD, MPH; Lee, MelindaA., MD; Kraemer, Dale F., PhD; Schmidt, Terri A., MD; andDelourit, Molly A., BA (2001). “Oregon Physicians’ AttitudesAbout and Experiences With End-of-Life Care Since Passageof the Oregon Death with Dignity Act”. The Journal of theAmerican Medical Association. Vol. 285, p. 2363-69

6. Jamison, Stephan (2000). “Factors to Consider BeforeParticipating in a Hastened Death: Issues for MedicalProfessionals”. Psychology, Public Policy, and Law. Washington,DC: American Psychological Association, Inc. 6(2) p. 416-33.

7. Lorenz, Karl, MD, MSHS; Lynn, Joanne, MD, MA, MS (2003).“Moral and Practical Challenges of Physician-Assisted Suicide”.The Journal of the American Medical Association. 289(17) p.2282. Retrieved October 23, 2004, from<www.archinternmed.com>

8. Van Leeuwen, Everet; and Kimsma, Gerrit (2000). “ProblemsInvolved in the Moral Justification of Medical Assistance inDying: Coming to Terms with Euthanasia and Physician-AssistedSuicide”. Annals New York Academy of Sciences. New YorkCity: New York Academy of Sciences Press. p. 157-72.




Vol. I, Issue 1

Spring 2005

Over the past several years, cochlear implant

technology and its attendant train of ethical quandaries

have made headline news. The debate over the

determination to use cochlear implants in prelingually deaf

children brings to light a host of legal and ethical issues,

including informed consent and parental decision making,

questions of the cost-effectiveness of surgery and therapy,

risk assessment, and the ethical dilemma of refusal of

treatment. The sociological dimension of this bioethical

debate highlights two pervasive trends: a distinct

misunderstanding of Deaf Culture, and a more general

socio-cultural blindness to those who are “different.”

This socio-cultural blindness is not unique to the issue

of cochlear implants. In the case of physician-assisted

suicide and the disability community’s protests, it was the

existence of a cultural ignorance on the part of the so-

called “normal” community which made it nearly

impossible for the disability community’s wishes to be

understood and respected. American society tends to

operate on these cultural assumptions and social biases,

thus perpetuating a selfish social doctrine which suggests

“you’re not as good as us if you’re not like us” (Correll,

2002).

The cochlear implants controversy originated in the

1980’s with the first pediatric cochlear implant surgery at

the House Ear Institute in Los Angeles (Delost and Lashley,

2000). What evolved from this technological leap was a

huge rift between the hearing and the non-hearing parents

of deaf children. The proponents of cochlear implants

support the use of this technology which can medically

repair deafness in children with prelingual sensorineural

hearing loss. These hearing parents are supported by

medical professionals, the National Institute of Health

(NIH), the Cochlear Implant Association, Inc., the

American Medical Association (AMA), the American

Academy of Otolaryngology-Head and Neck Surgery and

the vast majority of hearing society. On the other side of

this rift is the Deaf Community, whose members recognize

deafness not as a disability but rather as a cultural identity.

This Community includes non-hearing parents of deaf

children, many deaf educators and organizations such as

the National Association of the Deaf (NAD).

Cochlear Implant Technology

In the case of a sensorineural hearing loss, the tiny

hair cells which typically conduct auditory signals in our

cochlea have either been damaged or are absent from the

inner ear. As a result, the electrical impulses which usually

travel from these hair cells to auditory nerve fibers for

interpretation are inefficacious; the nerve fibers are not

enervated and there is no hearing response. The cochlear

implant is an electrical device which proposes to remedy

this incapacity by functioning in place of the damaged

hair cells and providing the necessary electrical stimulation.

The implant mimics patterns of nerve activity present in

the normal human ear and allows for the “spontaneous

recognition of all types of sound” and eventual acquisition

of speech (Eddington, 1994).

While there are many adults with the implant, the

most profound improvements in hearing and speech have

been observed in children. The younger the child is when

the implant surgery takes place, the better the outcome.

As a result, this debate has profound consequences for

those deaf people who cannot make the decision for

themselves—the children.

Deafness: Pathological vs. Sociocultural Perspectives

The core of the bioethical debate is rooted in the

battle to define disability and understand deafness. In his

Aviva Weinberg is a Senior at the University of Pennsyl-

vania and is a Fine Arts major.







19104


Pediatric Cochlear Implants: The Great Debate

Author: Aviva Weinberg, University Of Pennsylvania

Faculty Sponsor: Paulr R. Wolpe, Ph.D.

Abstract:

The rise and refinement of the cochlear implant, a

device meant to correct for sensorineural hearing

loss in prelingually deaf children, has faced much

debate and criticism. The controversy over this

corrective technology has revealed a significant social

divide between the hearing and the non-hearing

parents of these deaf children. While the hearing

parents welcome the implant as an exciting new

medical remedy for their children’s deafness, the non-

hearing parents reject the implant as a tool of

discrimination. The source of this divide seems to lie

in two very different operative paradigms for

deafness: the pathological and the sociocultural. The

hearing parents’ pathological view places deafness

as an auditory deficit meant to be repaired, while

the non-hearing parents view deafness as a

sociocultural identity. Understanding these divergent

social perspectives sheds light on the heavy

controversy surrounding the cochlear implant and

its hopes for future use.



Vol. I, Issue 1

Spring 2005


book Seeing Voices, Oliver Sacks remarks that although

society tends to think of deafness as a nuisance,

disadvantage and handicap, the deaf community has joined

together and views itself in an “ethnic light” as a people

with “a distinctive language, sensibility and culture of their

own” (Sacks, 1990; xii). This difference between deafness

as handicap and deafness as culture is encompassed within

two pervasive views of Deafness. The pathological view

“sees deafness as an auditory deficiency, a handicap, a

medical problem to be remedied so that a deaf person

becomes as much like a hearing person as possible”

(Skutnab-Kangas, 2000). Those who support this view

have a largely medical understanding of deafness and

thus desire a medical intervention. The NIH, AMA and

various medical professionals urge the use of cochlear

technology to ‘normalize’ deaf children by mainstreaming

them into the hearing world. The efficiency of the

procedure and its promises of positive results excite those

parents who so strongly desire the entrance of their

‘disabled’ children into dominant culture.

The opponents of the cochlear implant possess a

very different view of deafness. For them, it is Deafness

with a capital D, for the ethnic community it denotes.

Their sociocultural view “sees the Deaf as a sociocultural

minority, (“different,” but not deficient) which shares a

series of characteristics with other minorities and where

the problems the Deaf face can be seen as human rights

problems” (Skutnab-Kangas, 2000). In their view, Deafness

is not a disability to be ‘fixed’ medically, but rather it is a

cultural identity which should be accepted and supported in

our culturally diverse society. The suggestion that a Deaf

individual is inferior or somehow deficient is seen as a

grave insult within the Deaf Community (Sound and Fury,

2001). Supported by the NAD, the Deaf Community

rejects this biased definition of what is ‘normal’ and are

extremely hostile to the practice of viewing the deaf child

as ‘broken,’ ‘abnormal’ and ‘fixable.’ They fear the cochlear

implant as an “isolating means” which will eradicate the

use of American Sign Language , hold back

communication development, and ultimately threaten the

rich and supportive Deaf cultural tradition.

Many opponents of the implant fear that their

children will be forced to straddle the divide between two

worlds. “Many deaf people and some hearing parents of

deaf children speak of two worlds, one hearing and one

silent, and of deafness as a birthright, part of an identity,

almost something celebrated rather than a disability to be

fixed” (Markon, 1998). According to this view, deafness

is a subculture in which they are proud to incorporate

their children. They do not see their silent world as cold

and isolating but rather view it as an “enjoyable alternative

to hearing” (Sound and Fury, 2001). Consequently, the

cochlear implant is an affront to their cultural identification

and not a welcome amelioration.

The debate is thus one that hinges greatly on the

social construction of “deafness” in America and the great

divorce between the world of the hearing and the non-

hearing.

The Formation of a Culture

At the heart of the debate lies a pervasive ignorance

and insensitivity to Deaf Culture. But how did this culture

form and why does this social rift exist?

There were several reasons for the cultural

germination of Deaf Culture. Historically, the deaf existed

as a group of isolated and marginalized individuals,

spurned by society and considered intellectually inferior

due to their lack of communication abilities. As a result

of this social rejection and oppression they formed a sense

of community, shared circumstance and a special bond

of kinship in their collective silent world. With the

introduction of sign language, a group of individuals with

a language quite distinct from the language of governing

society galvanized into a community. In 1880 the Deaf

Community organized the National Association of the

Deaf, the first disability association to organize for the

purpose of safeguarding the accessibility and civil rights

of the deaf and hard of hearing (NAD, 2003).

Sign language, by conferring the power of an owned

form of communication, was responsible for the creation

of this insular but proud community and its burgeoning

culture (Sacks, 1990). To those who are deaf or hard of

hearing this community provided a substitute for the cold

and unwelcoming hearing community. To spend a

childhood in isolation and then find a community of

individuals who shared the same frustrations, limitations

and experiences was an incredible change. It is no surprise

that a pathological view of deafness has been perceived

as a threat to Deaf Culture. Such a medicalized view

strikes at the very heart of deaf cultural identity; it reduces

its subculture to pathology and thus undermines the pride

and self-esteem the Deaf have gained within the context

of the Deaf Community.

The Deaf community rebuffs a medical prescription

for normalcy and frames the debate within their socio-

cultural view of deafness. A cultural analogy has been

made in this respect: “If you were a black person, would

you want to be white? Why would I want to hear? I’ve

been deaf all of my life. I’m not ill. I’m just a person who

can’t hear” (Markon, 1998: 2). Accordingly, the notion

of deafness as a deficiency is a form of ethnocentrism,

treating deafness as a medical handicap is discrimination

and the idea of a cochlear implant is exceptionally

offensive.

Framing the Debate

Most proponents of the technology are the hearing

parents of deaf children. These parents cite numerous



Vol. I, Issue 1

Spring 2005


reasons for their decision to use cochlear implants. The

importance they place on an oral/aural approach to

educating their children is based on a genuine desire to be

able to communicate with their children. They choose the

English language rather than sign language because it is

their native cultural language. They are not members of

the Deaf Community and therefore have no lingual ties

to sign language nor do they have many direct or

meaningful social bonds to Deaf Culture (James Parton,

1997). These parents cite low test-scores for ASL users

as one reason to employ the implant. They champion the

efficacy of the device, which has been proven to have a

notable success rate especially as the technology is refined

and improved. Proponents further emphasize that the

implant provides a wealth of valuable social opportunities

as hearing and speech are the means of full access to

society at large. They place great import on the ability of

the cochlear implant to provide for future life options in

an already demanding and competitive world.

Quite significantly, these parents make a point of

emphasizing that the decision is not one motivated by a

selfish desire to ‘normalize’ and make children ‘just like

us,’ but rather is an issue of providing as much freedom

and life choices as possible for their children, something

every parent wishes to do. To them, deafness threatens

something of supreme importance in American society:

Freedom (James Parton, 1997). In their view, their children

are not being deprived of a cultural identity, and as these

parents find support in a host of organization like the

Alexander Graham Bell Association, the Cochlear Implant

Clinical International, and the AMA , they have in a sense

created their own community, a Cochlear Community.

The opponents, many of whom belong to the Deaf

Community, counter many of their proponents’

justifications. They outright reject the socially-biased

definition of ‘normalcy.’ They deny the data on its efficacy

and continue to ask whether or not the “quality and

quantity of the benefits outweigh the risks involved”

(Delost and Lashley, 2000). Many are concerned with the

various precautions associated with the surgery. Others

cite the temporary speech delays as a reason to avoid the

surgery. (Hollins, 2000) Perhaps their most pressing fear

is that their children will become detached from the Deaf

world while still waiting for entrance into the hearing world;

instead they will exist in a form of limbo between the

two. These parents fear this “liminal position” (Hollins,

2000: 189), believing it will create a class of children who

are even further disadvantaged and marginalized within

society.

Another significant fear expressed by deaf parents is

that their children will reject them; they worry that their

children will no longer want to communicate with them in

ASL. They are also incredibly apprehensive of their child

becoming “ashamed” of their deafness, their identity. They

exclaim that sign is “their language,” deafness is a

“beautiful, natural state,” and their children should be

happy and proud to belong to Deaf culture (Sound and

Fury, 2001).

Most of the anti-cochlear camp also decries the

method in which hearing parents of deaf children are

introduced to the diagnosis of hearing loss. These parents

are swarmed with audiologists, speech therapists, and

pediatricians all of whom tell them about the medical

prognosis/diagnosis and disadvantages of this ‘handicap.’

They are not introduced to deaf people nor are they

introduced to the concept of deafness as cultural identity.

Ultimately these parents only see deafness as a disability

and not a ‘natural state.’ They falsely see cochlear implants

as “instruments of success” in removing this disability

(Delost and Lashley, 2000). The Deaf community argues

that hearing society is wholly incapable of understanding

their side of the story –they don’t recognize the ability of

their children to thrive quite happily in the hearing world

without the ability to hear and speak. According to them,

the cochlear implant is not only “unnecessary, but the

idea of the implant is oppressive” (Delost and Lashley,

2000). It confers a social bias to eradicate deafness and is

interpreted as a death threat to Deaf Culture and

Community.

Common Ground

Although there seems to be a cultural gap between

these two camps, some common ground does exist. Both

proponents and opponents of the cochlear implant declare

that one must separate society’s ideals from the child’s

individual needs. The difference lies in what each side

considers a respect for their child’s needs. The proponents

say they have no reason to answer to the Deaf Community;

they owe them nothing and owe their children everything,

and must make a choice which will ensure the best possible

future for their children. The opponents say that these

parents must forget what they think society demands of

their children in terms of ‘normalization’ and integration

into society, but instead must foster their child’s natural

abilities and develop pride and place in the Deaf

Community. However, this opposing argument does not

appear to recognize the children’s individual needs at all,

and instead comes across as a selfish motivation. It claims

to be looking out for the child’s good but is far more

focused on the collective good of the Deaf Community

to which these parents belong, a community they fear will

be eradicated with the use of the cochlear implant.

The failure of these two camps to see eye-to-eye on

the issue of cochlear implantation results from a distinct

socio-cultural divide. The hearing and non-hearing parents

possess two entirely incompatible views of deafness which

prevent them from understanding eachother’s perspective.

Furthermore, the Deaf Community resents the cochlear



Vol. I, Issue 1

Spring 2005


implant as a symbol of a paternalistic control over their

society, a phenomenon which has been called “audism”

(Hollins, 2000: 183). For the Deaf Community the

cochlear implant is simply another way for the hearing

world to “dominate, restructure, and exercise authority

over the deaf community,” (Hollins, 2000: 183) and

perhaps even eventually uproot their culture. It would

seem that as long as they regard deafness as a minority

culture and the implant as the hearing majority’s tool of

discrimination, there is little hope for agreement between

the two camps of thought. Ultimately, a widespread

acceptance of the cochlear implant must wait for a

concrete resolution of the discord between the pathological

and sociocultural categorizations of deafness. Without this

social unification, the cultural gap between the hearing

and the deaf will remain an obstacle to treatment.

References1. Correll, Karen, Cochlear Implant case focuses debate on

parental rights, iCan News Service, Oct. 2002, retrieved 23Mar. 2003, <http://www.ican.com/news/fullpage.cfm/articleid/60C5C93F-4802-4E7C-B0C80ED045443882/cx/news.news/article.cfm>

2. Delost, Shelli and Sarah Lashley, “The Cochlear ImplantControversy,” MacMurray College, 2000. Retrieved 19 March,2003, Interdisciplinary Research Archives <http://www.drury.edu/multinl/story.cfm?ID=2442&NLID=166>

3. Dr. Irene W. Leigh, and Dr. John Christiansen, “Cochlear Implantsin Children: Ethics and Choices,” Keynote Presentation of theCochlear Implants And Sign Language: Putting It All TogetherConference Proceedings, Laurent Clerc National DeafEducation Center at Gallaudet University on April 11-12, 2002.

Retrieved 14 March, 2003. <http:/clerccenter.gallaudet.edu/CIEC/conference-proceedings.html#presentationA.>

4. Eddington, Donald K. Ph.D. “Cochlear Implants: RestoringHearing to the Deaf,” The Harvard Mahoney NeuroscienceInstitute Letter, Volume 3:4, (Fall, 1994). Retrieved 19 Mar.2003,<http://www.med.harvard.edu/publications/On_The_Brain/Volume3/Number4/Cochlear.html>

5. Hogan, Anthony, “The Business of Hearing,” Health, 2,4 (October1998) 485-501.

6. Hollins, Kathryn, “Between Two Worlds: the social implicationsof cochlear implantation for children born deaf,” Madness,Disability, and Social Exclusion: The archeology andanthropology of “difference,” ed. Jane Hubert, (London:Routledge, 2000) 180-195.

7. James Parton, Melody. A Parent Perspective of CochlearImplants, 1997 FDA Hearing Speech, retrieved 12 March, 2003,<http://www.allhear.com/patients/MelodyParton.html>

8. Jones, Megan A., “Deafness as Culture: A PsychosocialPerspective,” Disabilities Studies Quarterly, Spring 2002,Volume 22, No. 2 retrieved 12 March 2003.<www.cds.hawaii.edu>.

9. Levy, Neil, “Reconsidering cochlear implants: the lessons ofMartha’s Vineyard,” Bioethics, 16:2 (April, 2002) 134-153.

10. Markon, Jerry. “A Gain or a Loss? Deaf Community Split overImplants that Help Some Hear,” Newsday Nov. 1998, pp A05.

11. National Association of the Deaf (NAD), Position Statement onCochlear Implants. NAD Cochlear Implant Committee, Approvedby the NAD Board of Directors, October 6, 2000. Retrieved 20March, 2003. <http://www.nad.org/infocenter/newsroom/positions/CochlearImplants.html>

12. Sacks, Oliver. Seeing Voices. (New York: Vintage Books, 1990).13. Shapiro, Joseph P. “The Deaf Celebration of Separate Culture,

”No Pity. People with Disabilities Forging a New CivilRights Movement. (New York: Random House, 1993) Chapter 3.

14. Skutnab-Kangas, Tove. Linguistic genocide in education—orworldwide diversity and human rights? (New Jersey & London:Lawrence Erlbaum Associates, 2000) Chapter 4.

15. Sound and Fury, prod. Roger Weisberg, dir. Josh Aronson, 2001.

Documents

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