BioethicsDefinition

The branch of biology which deals with the moral ethical religious political and social issues raised by the advancements in the

HISTORY OF BIOETHICS

Bioethics was preceded by medical ethics, which focused primarily on issues arising out of the physician–patient relationship. The ancient Hippocratic literature (which includes but is not limited to the Hippocratic Oath) enjoins doctors to use their knowledge and powers to benefit the sick, to heal and not to harm, to preserve life, and to keep in the strictest confidence information that ought not to be spread about (though precisely what must be kept confidential is not detailed). These basic values and principles remain an essential part of contemporary bioethics. However, after the Second World War it became clear that the old medical ethics was not sufficient to meet contemporary challenges.

Unprecedented advances in medicine, including the use of penicillin and immunizations against childhood diseases, have saved literally millions of lives. So have open heart surgery and cardiac catheterization, chronic hemodialysis, and organ donation. At the same time, many of the tools of modern medicine are very expensive, and thus out of the reach of many who might benefit from them. Medicine’s success thus led to a debate about how to pay for health care. In most industrialized countries, the provision of health care is viewed as the responsibility of government, comparable to the obligation to provide public education. By contrast, in the United States many still regard payment for health care as an individual responsibility, or at least something that employers, not the state, should provide. Among those who agree that some kind of national health insurance is both fair and fiscally sound, a debate continues between egalitarians, who insist that no care should be provided unless it is available to all who need it, and those who favor a tiered health care system that allows some medical services to be distributed by the market.

Medicine’s successes in the post-war years raised another issue: the value of preserving life. Respirators were originally invented for people who were expected to recover and be able to breathe on their own. Within a short period of time they

began to be used on people in persistent vegetative states, forcing medical professionals to ask whether this was an appropriate use of technology. Should people who are permanently and irreversibly unconscious be kept alive indefinitely?

A similar issue resulted from the development of neonatal intensive care units (NICUs), which have saved the lives of many premature babies who would have died in earlier decades. Many of these babies go on to have normal, healthy lives, but many face a lifetime of severe disabilities and serious health complications. Thus, NICUs raise the question: Ought life to be preserved regardless of the nature or quality of that life? And if there are times when life should not be preserved, who should be authorized to make these decisions?

During the 1960s these questions began to be debated at academic conferences and in scholarly journals, giving birth to the field of bioethics. In 1969 the Hastings Center in Garrison, NY, an independent, nonpartisan, and nonprofit bioethics research institute, was founded by Dan Callahan and Willard Gaylin to explore fundamental and emerging questions in health care, biotechnology, and the environment. Its journal, the Hastings Center Report, first appeared in June 1971. In July of that year the Kennedy Institute of Ethics at Georgetown University opened, with two research scholars: LeRoy Walters, who soon became its Director, and Warren Reich, who was the editor of the first edition of the Encyclopedia of Bioethics, published in 1978.

The term ‘bioethics’ was coined in the early 1970s by biologists who brought to the public’s attention two pressing issues: the need to maintain the planet’s ecology, on which all life depends, and the implications of advances in the life sciences toward manipulating human nature. In his book,Bioethics: Bridge to the Future, published in 1971, Van Rensselaer Potter focused on the growing human ability to change nature, including human nature, and the implications of this for our global future.

Ways to Talk About Moral InterestsIn the history of Western ethics, there are at least four prominent ways to talk about moral interests. One way is in terms of the results or consequences of actions. Discussion about consequences requires that individuals be able to give well-grounded reasons to explain why an agent or agents should or should not pursue the consequences of an action. Consequences that advance interests are

labeled "good," and an agent should pursue such consequences. Providing genetic therapy to those with conditions that can be treated is, for the most part, good, because this promotes the interests of the parties or stakeholders involved. Consequences that impair interests are "bad," and should not be pursued. Genetic testing for diseases without cures may be considered "bad" because it impairs the interests of the parties involved by reducing the possibility of hope for a change in health status. Another way to talk about moral interests is in terms of a right or rights – terms that are to be distinguished from the earlier use of "right." Here, a right is a claim to be treated in a certain way regardless of the consequences of doing so. A right is typically understood as a barrier that protects individual self-determination, which should be protected in a classical liberal tradition such as the one found in the U.S. For example, state legislation protecting genetic information is built on the view that individuals have a right to the privacy or ownership of personal information. In other words, to honor a right is the "right" thing to do. Denial of rights is typically seen to be a violation of liberty or freedom in a society, because a denial of rights does not allow an individual to pursue things that he or she chooses. Unregulated access to genetic information by, for example, employers, insurers, and educational institutions, may lead to violations of liberties that are considered discriminatory toward an individual or group of individuals, as defined by disease status, race, gender, class, and so on. In other words, to deny a right is the "wrong" thing to do.

A third way to talk about moral interests is in terms of respect for person. To show respect for persons is to value persons by refraining from eliminating any of the necessary conditions of personhood, which include life, bodily integrity, freedom to make choices and to act upon them, and so on. For this reason, genetic manipulations that lead to great harm in human individuals, the species, and the biosphere, are considered "wrong." Correspondingly, respect for persons means acting to promote the presence of such conditions, as in the case of using genetic manipulation to treat patients. Respect involves, then, a negative and a positive duty toward others. It is the obligation to act in a certain way toward a person or persons in order that the necessary conditions of personhood may be realized. In this view, respect is not dependent upon the rights or consent of others. In this way, a respect-for-person appeal accommodates discussions of moral agents who are unable to consent, such as embryos, fetuses, and young children. This appeal is important in discussions of cloning, for example, because a consent-based approach is unable to accommodate entities unable to consent, such as fertilized eggs, embryos, and future generations.

A fourth way to talk about moral interests is in terms of virtue, or moral character. A virtue is a character trait, and Western ethics has a long history devoted to literature that discusses what sort of person one ought to be, and what sort of actions one ought to perform to be the "right" sort of person. In the West, we tend to favor someone who has the virtues of independence, motivation, and ingenuity. The scientist pursuing a novel idea that will help others is often applauded. Alternatively, we tend to frown on those who are openly self-interested and greedy, as in the case of scientists who seek fame from great discoveries solely for their own financial well-being.

In short, ethics involves an appeal to a wide range of interests as it justifies what ought to or should be done. The challenge in any ethical discussion is to clarify the appeals, including one's own, and move to develop a clear, concise, and careful argument.

Ethical Analysis and AppealThinking about ethical appeals is the more challenging aspect of ethical analysis. Appeals vary in kind and degree, and often diverge from our own appeals. Thus, it is important to think outside your own perspective and in terms of how others may think. Another challenging aspect of ethical analysis is organizing all the information that inevitably plays a role. This course offers a guideline to organizing this kind of information in an ethical, analytical way.

To begin with, you must get the facts straight. Good ethics is based on good science. Bad ethics is based on bad science.

Following this, you must consider the stakeholders in a debate. Different stakeholders often have different appeals.

1. To continue, you must map out the position of major stakeholders, hopefully drawing from our discussions of different accounts of moral interests.

2. Once the terrain of the ethical problem is mapped, you then isolate what you see to be the major ethical conflict in the problem. You will be unable to resolve all the conflicts, so you should choose the one that is particularly troublesome in order to move the debate along.

3. Since there is more than one way to resolve an ethical conflict, you should consider the likely options.

4. At this point, you are prepared to take a position on the problem. It is at this point that you spend time developing your position by clearly and carefully

stating the major reasons for your position. This is the heart of ethical analysis, and should command special attention.

5. Then, in order to be sure about your position, you state the most serious criticism of your position.

6. You then follow the stated criticism with a response. No ethical argument is perfect, but there are ones that have fewer weaknesses than others in terms of their clrigor of rational thinking.

In this view, ethical analysis is not very different from an argument in science. Both involve a process of rational inquiry. Inquiry involves posing questions. Rational inquiry involves posing clearly formulated questions and seeking well-reasoned answers to those questions. Both are open to revision, given new information and arguments. Both are public, meaning that they are accessible to other interested people and are framed in terms that others can understand. Both illustrate how interested humans come to knowledge, whether facts or positions, carefully and concisely. Over the next four weeks, you will have an opportunity to explore and practice the process of ethical analysis within the context of a variety of genomics issues – from genetically modified food to stem cell cloning.

GENETIC TESTING AND SCREENING

ETHICS

The ethical issues arising in relation to genetic testing and screening largely depend on the view that there is something special about genetic information which makes it different from other kinds of medical information. The features that make it special are that it has implications for family members other than the individual in question and that it is predictive and not specific to time.

Although other kinds of medical information may share one or more of these features to some degree, and so it might be claimed that genetic information is not one of a kind, nevertheless these features are important in addressing the ethical issues and they are relevant to both testing and screening. The fact that genetic information is shared with family members gives rise to issues about confidentiality and sharing of information (Human Genetics Commission, 2003). An individual may wish his/her test results to be confidential, whereas the health professional may consider it important that a relative has access to the information if it is relevant to the relative’s future health. There is, therefore, an issue for the

health professional as to whether to disclose or not, if the patient is unwilling to share the information.

The predictive nature of genetic information indicates that there is an important distinction between types of testing; whereas some diagnose an existing condition, others may be predictive of future health status. Testing an individual for whether he or she has a particular disorder can be helpful either for identifying a course of action or simply for offering relief where anxiety has been caused by not knowing. Where predictive testing is concerned, however, whether for predisposition to a late-onset disorder or for susceptibility to common disease, the issues are more complicated. Uncertainty over the accuracy of the test results and how they are to be interpreted is an issue, as people may make life-changing decisions on the basis of test results, perhaps becoming fatalistic although it is not certain that they will actually develop a condition (e.g., heart disease) or how severe it will be. Where children are concerned, testing them for a late-onset disorder, especially one for which there is currently no treatment available (e.g., Huntington’s disease), may cause them positive harm such as stigmatization (Clarke, 1998). There has also been concern that predictive information might be used by third parties such as insurance companies or employers to the detriment of individuals: for example raising premiums or denying insurance or employment to people on the basis of a higher risk of developing a particular disorder (Nuffield Council on Bioethics, 1993; European Group on Ethics in Science and New Technologies, Genetic testing and screening 1612003; UK Government and Association of British Insurers, 2005).

The third feature of genetic information mentioned, that it is not specific to time, facilitates its long-term storage for future analysis, as new associations and testing techniques are discovered. This has led to the setting up of bio-banks in different countries as research tools to enable associations to be made between genetic factors and health status, providing information about variation within the population (Ha¨yryet al., 2007). These initiatives are not typically justified on the basis of benefit to the individual donor of a sample but on the basis of public good or public health, as is the case in screening programs. Practice varies, however, on the extent to which an individual participant may expect to receive information revealed about their own genetic constitution. Because of the disadvantages that might accrue to people on the basis of genetic test results, some have argued for the individual’s ‘‘right not to know’’ information about their genetic constitution, and consent to have a sample taken for testing is thus a central ethical issue

(Chadwick et al., 1997). Questions arise both as to who may consent (e.g., in the case of childhood testing) and as to what information is provided and how (e.g., is some form of genetic counseling necessary?) (Nuffield Council on Bioethics, 1993). Where longterm storage is an issue, there are further questions about narrow or broad consent to future uses of the sample: whether recontacting of the donor is necessary at different stages.