JOURNAL OF WOMEN'S HEALTHVolume 7, Number 2, 1998Mary Ann Liebert, Inc.

Choices: Biomédical Ethics and Women's Health

Ethical Issues and Dilemmas

NANCY BOUCOT CUMMINGS, M.D.

ONE CAN RARELY PICK UP A NEWSPAPER Or

magazine or turn on the radio or televi-sion without finding some report of a medicaldilemma that has ethical dimensions. The in-crease in the number of professional journalsand journal articles that focus on biomédicalissues has been significant. The decision of theeditors of the Journal of Women's Health to in-troduce an ethics section is important. Here wewill identify crucial ethical dilemmas and ed-ucate the Journal's readers about how to re-

solve some of the resulting ethical issues. Themedia continually express strong opinionsabout issues that range from reproduction tothe end of life. Health professionals andbioethicists are asked to provide opinionsabout these issues. It is essential that physi-cians and other health care professionals rec-

ognize these issues and develop a logicalmethod for their analysis.

Because the field of biomédical ethics is rel-atively new, many practicing physicians andinvestigators have not been trained in this dis-cipline, and thus many health professionalschools provide a course in biomédical ethics.Students are taught an approach to ethicalanalysis that includes (1) listing the medicaland relevant socioeconomic factors, (2) identi-fying the ethical issues, (3) performing an eth-ical analysis, (4) recommending a solution, rec-ognizing that "there are no easy answers,"often no answer, but (5) concluding that onemust find an answer.This overview provides an introduction to

the broad aspects of biomédical ethics that en-compass almost every facet of modern medi-cine, from primary care to sophisticated clini-cal research. The economics of health care exertpressure on delivery of patient care that hasprovided new and troubling challenges forphysicians.Bioethics,1 or biomédical ethics, arose in the

second half of the 20th century. The impact ofthe development of remarkable life-savingtechnologies and concerns about conduct of re-search on human subjects proved especiallytroubling to philosophers and theologians—those traditionally concerned with ethics.Gradually the new discipline took form, andwithin a decade, health professionals becameinvolved. The Nazi doctors' experiments onhuman subjects in mental hospitals and later inconcentration camps were horrifying to the civ-ilized world.2 The Nuremberg trials and the re-sultant Nuremberg Code had a major impacton medicine and medical research. The adventof treatments for chronic renal failure, both he-modialysis and kidney transplantation, pro-vided remarkable technologies to save lives ofthose patients with end-stage renal diseasewhose lives had been doomed earlier. How-ever, the inordinate costs and the shortage oforgans for transplantation made these "med-ical miracles" out of reach for most patients.The Seattle Policy and Admissions Committee3provided a means for allocating the scarce re-

sources for dialysis, but the rationing decisionsmade by this "God Committee" about who

Nancy Boucot Cummings, M.D., of the National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda,Maryland, is the series editor of this new column on ethics.

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would receive the life-saving technologyproved troubling, especially to philosophersand theologians.The strong media attention belatedly given

to the Tuskegee experiment and the publica-tion of Bad Blood4 influenced Congress to callfor action, resulting in the Belmont Report ofthe Presidential Commission for the Study ofEthical Problems in Medicine and in Bioméd-ical and Behavioral Research.5 Institutional re-view boards (IRBs) to evaluate ethical aspectsof research protocols were mandated. The dis-covery that, between 1944 and 1974, the gov-ernment was responsible for several thousandhuman radiation experiments led PresidentClinton to appoint an Advisory Committee onHuman Radiation Experiments in January1994. After publication of the Executive Sum-mary and Final Report of the Advisory Com-mittee on Human Radiation Experiments,6 oneof its recommendations has been implemented:the appointment of a National Bioethics Advi-sory Board (NBAC). The continued discoveryof ethical dilemmas resulting from both med-ical care and clinical research strengthened theresolve of many professionals from diverse dis-ciplines to search for means to preyent viola-tions of patients' rights and to alleviate the con-

sequences of such malfeasance.Philosophers and theologians, such as Paul

Ramsey7 and Joseph Fletcher,8 addressed someof the ethical and moral aspects of modernmedicine in the 1950s, but the development ofthe field of biomédical ethics became more in-tense by the 1970s. A number of schools andcenters of biomédical ethics were started. Manyapproaches to analysis and thinking in ethicsas well as ethical theories were proposed: prin-ciplism ("Georgetown mantra"), phenomenol-ogy, virtue ethics, medical hermeneutics, nar-rative, and casuistry. In Principles of BiomédicalEthics,9 Beauchamp and Childress described an

approach using the four ethical principles thatprovide a practical framework for ethicalanalyses: autonomy, beneficence, nonmalefi-cence, and justice. The shift from the previouspattern of physician paternalism to patient au-tonomy marked a new emphasis on active pa-tient participation in decision making and in-formed consent. The use of beneficence, doinggood, often was the paternalistic physician's ra-

tionalization for not involving patients in deci-sions. Nonmaleficence is defined by the famil-iar primum non nocere: first, do no harm.Justice is a fairness principle that covers

broad issues, such as access to care, equitabledistribution of society's goods, and many fac-tors that fall within broader socioeconomicspheres. Other factors considered ethical prin-ciples include integrity, truth telling, fidelity,confidentiality, privacy, liberty, charity, com-passion, respect for persons, and sanctity of life.Phenomenology uses descriptive accounts ofclinical situations and is similar to casuistry,which uses paradigm cases to develop generalmoral rules. Narrative, similarly, emphasizesthe patient's story. Hermeneutics, from theGreek word meaning "interpretation," usesmoral experience in relation to patient andhealth care professionals' interaction. Virtueethics considers the qualities of character of theindividuals and communities involved in in-teraction.The spectrum of ethical issues confronting us

in this last decade of the 20th century is broad.End-of-life issues, terminal illness, and the nu-merous aspects related to death and dying willapply to everyone. Death is an integral part ofthe human condition, yet the subject of deathremains a taboo in our modern society. With-holding and withdrawing treatment, particu-larly focusing on life-sustaining technologies,use of palliative care, hospice care, and med-ical futility are among the topics that arise fre-quently in late-term care. Concerns of the pop-ulation about losing control at the end of lifehave resulted in attention to physician-assistedsuicide, evidenced by legislative and court ac-tions, as well as such publications as FinalExit}0 Numerous medical groups have devel-oped codes applicable to care of terminally illpatients. Two cases that reached the SupremeCourt in June 1997 (Vacco v. Quillu and Wash-ington v. Glucksbergu) and the Oregon law sup-porting physician-assisted suicide indicate thepublic's concern about end-of-life issues.13The panoply of concerns surrounding repro-

ductive technologies not only raises ethical is-sues but also is troubling for many religiouscommunities. Artificial means of conceptionfrom insemination to in vitro fertilization raiselegal as well as ethical and religious concerns.

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Questions of who actually is the parent in casesof surrogate motherhood, egg or sperm dona-tion, and so on have drawn the attention oflawyers and parallel some of the old scholasticarguments. Most recently, gene therapy, ge-netic testing, and the human genome projectproject open a Pandora's box of ethical issues.The ethical issues to be addressed in articles

in the future will cover many topics. Researchethics, especially related to human experimen-tation and to women's health research, will re-ceive much attention. Among other ethical is-sues are clinical research vs. patient care, ethicsconsultations, ethics committees, health care

professionals' approach to the myriad ethicaldilemmas, cultural diversity, access to care, pri-vacy/confidentiality, the impact of computer-ized records, managed care, socioeconomic is-sues, justice in allocation of scarce resources,treatment, organs for transplant, expensivemedications, and all the remarkable aspects ofmodern medical care, research, and treatmentforHIV/AIDS, informed consent, internationalethical issues, and government involvement inhealth care. The list seems infinite.There is a basic conflict between clinical re-

search and patient care. Although there havebeen codes of research ethics dating back to theearly 19th century, the conflicts surroundinghuman research are not resolved readily. IRBsplay a forceful part in evaluation of ethical as-pects of academic institutions' research proto-cols. Informed consent is an important aspectof research and for clinical procedures. Becauseof marked cultural differences and diversitythroughout the world, there is concern whenresearch is planned for low-income countriesby investigators in high-income countries. Vul-nerable populations, including children, el-derly people, mentally disabled persons, andprisoners, must be protected from undue coer-cion or abuse in research.Topics to be discussed in the next 6 months

in the Journal of Women's Health include AIDS'clinical trials in Africa, end-of-life issues, fem-inist perspectives on clinical trials, genetics,moral priorities for women's health researchand genetics, and managed care and repro-ductive technologies. Authors for these arti-cles include W. French Anderson, Ph.D. (Uni-versity of Southern California, Los Angeles),

Arthur Caplan, Esq. (University of Pennsyl-vania, Philadelphia), Evan DeRenzo (NationalInstitutes of Health, Bethesda), John C.Fletcher, and Diane Meier (University of Vir-ginia, Charlottesville), Timothy E. Quill (Uni-versity of Rochester, New York), Peter Ubel(Veterans Affairs Medical Center, Philadel-phia), and Gladys B. White (National Advi-sory Board on Ethics in Reproduction, Wash-ington, DC). The Journal of Women's Healthwelcomes suggestions for future topics, au-

thors, and articles.The field of biomédical ethics is a challeng-

ing and fascinating one. Because of the re-

markable advances in medicine and in life-sus-taining technology (LST), issues arise thatnever would have occurred to physicians, evenin the early part of the 20th century. Advancesfrom vaccination in the late 18th century to thepotential for gene therapy in the 21st century,as well as the remarkable LSTs of this century(such as hemodialysis, kidney transplantation,cardiopulmonary support, and respiratorysupport), come with new moral and ethicalchallenges. We hope that by presenting currentethical dilemmas to the Journal's readers, healthprofessionals will be able to take a more

thoughtful and analytic approach to the dilem-mas presented by the advances in treatment ofpatients.

REFERENCES

1. Reich WT. The word "bioethics": Its birth and thelegacies of those who shaped it. Kennedy Inst EthicsJ 1994;4:319.

2. Annas GJ, Grodin MA, eds. The Nazi doctors and theNuremberg Code. Human rights in human experi-mentation. New York: Oxford, 1992.

3. Alexander S. They decide who lives, who dies. Life,November 9,1962, p 102.

4. Jones J. Bad blood. New York: Free Press, 1972.5. U.S. National Commission for the Protection of Hu-

man Subjects of Biomédical and Behavioral Research.The Belmont Report: Ethical principles and guidelinesfor the protection of human subjects of research.Washington, DC: U.S. Government Printing office,1978. [Editor's note: Online version (dated April 18,1979) can be found at website http://www.nih.gov/grants/oprr/belmont.htm.]

6. Advisory Committee on Human Radiation Experi-ments. Executive Summary and Final Report. Wash-ington, DC: U.S. Government Printing Office, 1994.

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7. Ramsey P. The patient as person: Explorations inmedical ethics. New Haven, CT: Yale UniversityPress, 1970.

8. Hetcher JF. Morals and medicine. Boston: Beacon,1954.

9. Beauchamp TL, Childress JF. Principles of biomédicalethics, 4 ed. New York: Oxford University Press, 1994.

10. Humphry D. Final exit: The practicalities of self-de-liverance and assisted suicide for the dying. Eugene,OR: The Hemlock Society, 1991.

11. Dennis C. Vacco, Attorney General of New York, etal v. Timothy E. Quill et al, U.S. 95-1858.

12. Washington et al, Petitioners v. Harold Glucksberg etal, U.S. 96-110.

13. LeeMA, Tolle SW. Oregon's assisted suicide vote: Thesilver lining, Ann Intern Med 1996;124:267.

Address reprint requests to:Nancy Boucot Cummings, M.D.

NIDDK-NIHBuilding 45, 5AN 32JBethesda, MD 20892