Teaching MCH EthicsKay M. Perrin, PhD, MPH, RNUniversity of South Florida College of Public HealthAPHA, November 2004

TEACHING MCH ETHICSMCH CompetenciesHistorical background as a foundation of medical ethicsMajor ethical principlesDevelopment of ethical morals and valuesMCH case studiesDiscussion and reflections

MCH COMPETENCIESMCH Professionals should have knowledge and understanding of:The philosophy, values, and social justice concepts associated with public health practices in MCHThe principles and issues involved in the ethical conduct of practice and research within MCH populations, organizations, agencies including data collection, management, analysis and dissemination

The philosophical concepts and rationale underlying the delivery of family-centered, comprehensive, community-based and culturally competent MCH programs including community assets

MCH Professional should be able to demonstrate the following skills:Ethical conduct in practice, program management, research, and data collection and storagePromotion of cultural competence concepts within diverse MCH settingsAbility to build partnerships to foster community empowerment, reciprocal learning and involvement in design, implementation, and research aspects of MCH programs

HISTORICAL BACKGROUND Nuremberg Code of 1947Helsinki Declaration of 19641974 U.S. Federal Regulations: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research

1920:Permission to Destroy Life Unworthy of Life Doctors should be allowed to kill:Terminally ill or mortally woundedincurable idiots whose lives are viewed as pointless or valueless with an emotional or economic burden on familyUnconscious who would waken to nameless suffering

1924: Carrie BuckPoor, powerless, daughter of a prostitutePregnant out-of-wedlock by foster fatherMother in jail; baby not quiet normal3 generations of idiots is enough (Justice Oliver Wendell Holmes)In U.S. 60,000 people legally, involuntarily sterilized between 1907 and 1960

1980s:Dehydrating Cognitively Disabled Persons1st: Dehumanized persons 2nd: Gave moral permission to families and doctors to withdraw basic sustenance3rd: Urged courts to make dehydration a legal right to dieToday: Causing death by dehydration is legal in all 50 states

MAJOR ETHICAL PRINCIPLESBeneficenceJusticeUtilitarianismConfidentialityAutonomy / Informed Consent

BeneficenceDo not harmMaximize possible benefitsMinimize possible harmDirect benefit to subjectOverall benefits to society

JusticeFair distribution of benefitsEqual sharesEqual individual needEqual individual effortEqual societal contributionEqual merit

UtilitarianismAcknowledges that the pains of some may have to be accepted in particular situations in which the best realization of value for everyone affected makes them unavoidableGreatest good for the greatest number

ConfidentialityThe importance of the patient being able to trust their health care provider to not reveal personnel and private information without the persons permissionGoal: Accurate diagnosis depend on a complete historyGoal: Society benefits, such as with reported diseases, by protecting others

Justification of confidentiality breachA threat to the patientA threat to other unidentified personsA threat to some other specific individualEX: Child abuse and specified contagious diseasesWhen benefits from the breach outweigh the wrong to the patient

Reportable Diseases in MarylandAIDS Amebiases Animal bitesAnithrax Arbovirals BotulismBrucellosis Cholera Coccidiodomycosis CryptosporiasisDengue fever DipthereaEhrlichiosis EncephalitisEpsilon toxin GiardiasisGlanders Conococcal infectionHeamophilus influenza HepatitisIsosporiasis Kawasaki syndromeLegionellosis LeporsyLeptospirosis ListeriosisLyme disease MalariaMeasles (rubeola)Meningitis, infectious Meningococcal Microsporidiosis Mumps Mycobacteriosis Pertussis Pesticide related illnessPlague Pneumonia in a health care worker Polionyelitis PsittacosisQ fever RabiesRicin toxin Rocky Mountain spotted feverSalmonellosisSepticemia in newbornsSARS Shigellosis SmallpoxStaphlococcal B Strep A and BSyphilis TetanusTrichinosis TuberculosisTularemia Typhyoid feverVaricella fatal cases onlyVibiosisViral hemorrhagic feversYellow feverYersiniosis*

(Dept of Health, Maryland 2004)

AutonomyFreedom to make individual choicesGiven adequate information

By building on the definitions of these basic ethical principles, we are led into a discussion about informed consent

Informed ConsentA process involving discussion between a provider and a patient.

It is not the signing of a consent form.

Elements of Informed Consent DiagnosisNature of the proposed treatmentPurpose of the proposed treatmentRisks and side effects of the proposed treatmentProbability that the proposed treatment will succeed

Alternatives to the proposed treatmentFore each alternative, discuss its risks and benefitsConsequences of no treatment should always be discussed

Exceptions to informed consentEmergencies if there is no time to get a persons consent, but it is likely that they would have consentedTherapeutic Privilege a providers determination that knowing the complete truth might harm the patient; rarely usedIncompetent Patients since the patient cannot consent, one must find out who is authorized to consent on their behalf

Physician:Legal Standard of Informed ConsentAs a legal standard, informed consent is imposed retrospectivelyCourts are involved only after a malpractice suit is filedProspective review is not conducted, because such review would be intrusive into the professional relationship of physician and patientGoal: patients well-being

Researcher:Legal Standard of Informed ConsentThe researcher is subject to prospective and continuing review requirements, including explicit and detailed standards for the information disclosedGoal: Gather evidence or data for testing a hypothesis with a goal of advancing scientific knowledge rather than benefiting the subject

Additional information for research protocols when obtaining informed consentsA description must be given of the confidentiality of research records and data An explanation must be given of the availability or unavailability of compensation or treatment for injury

Identification must be made of whom to contact for answers regarding the conduct of the research and the subjects rights as well as whom to contact in the event of an injuryAn explanation must be given of the subjects rights to refuse participation and to withdraw from the study

Information regarding currently unforeseeable risksReasons why an investigator might expel a subject from a studyIdentification of additional costs to the subject incurred as a result of participation in the study Consequences of the subjects withdrawal from the studyInformation about pertinent findingsInformation about the number of subjects participating in the research

DEVELOPMENT OF ETHICAL MORALS AND VALUESGood ethics begin with good factsIdeally, discussing case studies results in: Some narrowing of disagreements and differencesSome knowledge gainedIt is not always easy to discern the right answer to an ethical problem, but it is often easy to identify a wrong answerBad facts, failure to consider alternatives, or inconsistent reasoning

MCH CASE STUDIESFour questions for each case study:Uncertainty about the utility and safety of the research / technique / treatmentMoral uncertainty about the justifications for the research / technique / treatmentConceptual uncertainty about the patient it servesSocial uncertainty about its long-term effects

EXAMPLES OF MCH CASE STUDIESCircumcisionWomen in research or notPrenatal testingBehavior of pregnant womenDesigner babiesAbortion and embryo adoptionConflicts of interest among pharmacists

CircumcisionMarch 1999 AAP concluded that the health benefits of this practice do not justify routine circumcision1970 AAP no medical indication1989 AAP concluded potential benefitsIf we allow this risk to children to meet the cultural or religious need of parents, how do we determine when other cultural needs should triumph?Comparison of pediatric data with womens health data = conflicting results

Women in research or not?Baltimore Longitudinal Study (started in 1958) no women for first 20 yearsPhysician's Health Study 22,000 men and no women (Harvard Aspirin study)1982 Multiple Risk Factor Intervention Trial (Mr. FIT) 13,000 men and no womenHarvard caffeine and heart disease study 45,000 men and no womenFramingham Study longitudinal study with no women

Continued1908 heart disease is one of the best-kept secrets of womens health1964 American Heart Assoc. first conference on women and heart diseaseTitle: Hearts and Husbands: The First Womens Conference on Coronary Heart Disease How to Care for Your Man No discussion about self-care

Continued1950 thalidomide and DES - meant that no woman between the ages of 15 and 50 could no longer participate in new drug research unless she had been surgically sterilizedHowever, researchers did not exclude men even though Proscar, a drug used to treat enlarged prostate glands, was found to cause birth defects; men sign a statement saying that they would use condomsImplication: women have no control over their reproductive lives

Prenatal testingRight of prospective parents to reproduce children with genetic anomalies vs. the moral duty not to knowlingly reproduce an affected childThe future persons right to not be born with genetic anomalies outweighs the prospective parents right to give birthThe harm to the child, family and society-at-large have an impact on the moral acceptability of these decisions

Behavior of pregnant womenIncreasingly, the fetus is seen as a medical patient in its own right a patient whole quality of life can only be protected by recognizing its individual interestsWhen the womans behavior is seen has harmful, does society have a right to control her behavior?

Designer babies (gender selection)PGD (Pre-implementation Genetic Diagnosis) allows physicians to screen embryos for a wide range of possible diseases as well as for gender. Suitable embryos can then be implanted, while the future parents may decide not to implant other embryos. These other embryos may be destroyed or given to other infertile couples, where they will be implanted in the woman and brought to term.

Abortion or embryo adoptionEver since it became possible to freeze embryos as part of the process of assisting in reproduction, doctors and couples have faced a growing problem: What to do with the frozen embryos?Save embryos for second attempt?Donations akin to organ donations?Legal screening as with adoptions?Erosion of abortion laws if embryos are viewed the same as adoptions?Sharing information with child later for medical purposes?

Conflicts of interest among pharmacistsMost pharmacists who work in retail pharmacies have a serious potential conflict of interest. On the one hand, they are professionals, expected to be knowledgeable about drugs and to dispense them in a responsible and ethical manner. On the other hand, their income depends on the sale of products. Before the FDA's OTC (Over-the-Counter) Drug Review drove most of the ineffective ingredients out of OTC drug products, few pharmacists protected customers from buying products that did not work.Do MCH professionals ever profit (grants, data, tenure) at the expense of patients?

Issues related to research at universitiesUniversities being driven by research dollars rather than teaching evaluationsRelentless time and financial constraints to produce data for funding sourceTeaching hospitals often represent a place where vulnerable populations with specific medical conditions are brought together in one location

Watchdog citizen group tracking unethical medical research CIRCARE: Citizens for Responsible Care and Researchveracare@erols.com

DISCUSSION AND REFLECTIONWe in the U.S. dont have systemic atrocities, we have compartmentalized atrocities. But the intellectual underpinnings for the good of science; for the advancement of knowledge; for the benefit of society; for the national interest (Biomedical ethicist at the Maryland School of Medicine)

Example: Baby Doe (U.S.)Downs syndrome and parents refused surgery; ordered doctors to withhold food and fluids thus dooming her to deathIf a normal child were neglected to death, parents and doctors would be charged with child abuse and murder

Surgeon General KoopThe greatest protection that disabled newborns have in the U.S. is the concern on the part of the doctors who care for the newborns that someone is watching; considering the increasingly utilitarian state of medical ethics and the pressures placed on doctors by managed care companies to cut the costs of health care, that protection may be scant indeed.

Peter SingerInfants have no moral right to liveInfanticide at the request of the parents is ethical so long as it toll promote the overall interests of the family and societyInstead of going forward and putting all our efforts into making the best of the situation, we can still say no, and start again from the beginning.Rethinking Life and Death: The Collapse of Our Traditional Ethics (his book)

What can we do to improve the value system in institutions?More effort must be made to integrate values into the social fabric of the institution: supportive, compassionate, thoughtful.Greater emphasis on learning and less on evaluation to decrease cheating and dishonesty.Engage faculty and students in a series of discussion regarding the ethical foundations and core values of the professionalism

ConclusionPublic health cannot compromise on value systemsTeaching values is particularly difficult when education has become a trade with lots of money involved (Sheriff and Manopriya, 2000).Students learn a professional value system as it is portrayed by the institution they attend and by the faculty attitudes towards each other and towards their profession.

Thank you

Any comments?