Michael S. Yesley, J.D.
Coordinator, "ELSI" Program, U.S. Department of Energy, Los Alamos National Laboratory, Los Alamos, New Mexico 87545, USA
The United States is a heterogeneous society, which magnifies the challenge of social policy-making. Fact-gathering and sampling the range of opinions on an issue can be a truly monumental task. Fortunately, not every issue must be resolved on the national level. Many bioethics issues are settled at the state level, and often the states differ in the policies they adopt. These differences create a "laboratory of the states" that enables empirical comparisons of the effectiveness and results of alternative policies.
In the final analysis, many bioethics issues are resolved at the personal level of patients, physicians, others involved in health care and biomedical research, and, inevitably in the United States, lawyers. Laws and regulations may influence but are not always the final determinants of behaviour. Our own wishes and those of our families are powerful forces in resolving many questions. I believe a significant function of bioethics and those involved in this field is to assist individuals in arriving at their own conclusions, rather than establishing the boundaries within which we are permitted to act.
Inevitably, however, the field of bioethics is called upon to recommend broad policies in areas where legislators are hesitant to venture on their own. Then, the process of bioethics may be questioned along with the issues under consideration. There are many roads to the development of policy, some more comprehensive than others, some more efficient, some more credible. Clearly, attention must be paid to the method of bioethics policy-making as well as its content.
The examples I have chosen to discuss will illustrate these comments.
Surrogate motherhood is becoming more complicated
The status of surrogate mothering in the United States can be summed up in a word: varied. Disputes between surrogate mothers and intended parents since the landmark 1988 case of "Baby M"(1) in New Jersey have resulted in a variety of legal responses in different states. Recent legal actions in three states demonstrate the range of these responses.
In 1992, the California legislature found that surrogacy contracts are not against public policy and passed a bill (2) to permit surrogate motherhood for compensation. The governor of California vetoed the bill, however, and so the state was left without a statute specifically covering surrogacy. A year later, the California Supreme Court took up a novel case (3) in which a birth had resulted from the implantation of in vitro fertilized ova in a surrogate. Both the gestational mother, who was not genetically related to the infant (unlike the surrogate mother of "Baby M"), and the intended parents, who had contributed the fertilized eggs, sought to be declared the legal parents.
California statutory law, which, as I have noted, does not contemplate surrogate motherhood, provides that either a genetic relationship or giving birth can establish a mother-child relationship. In the case before the court, each of these tests pointed to a different mother. To resolve this conflict, the court decided that the intent of the parties expressed in the surrogacy contract was controlling. The court declared that the party who intended to raise the child as her own is the natural mother under California law (4).
Several other states have adopted a variety of laws specifically covering surrogacy. In July of this year, laws that became effective in New York (5) and Virginia (6) took opposite positions on surrogacy, although both states agree in barring commercial aspects of the practice. New York declared surrogacy contracts "are contrary to the public policy of this state, and are void and unenforceable." New York also prohibited paying or receiving a fee in connection with a surrogacy contract and imposed penalties for violating this prohibition. Thus, although New York does not prohibit surrogacy, it will not enforce a surrogacy contract and will penalize anyone who arranges the contract.
Virginia did recognize surrogacy contracts but imposed several conditions. A surrogacy agreement is enforceable in Virginia if it was approved by a court on the basis of findings that: the surrogate mother is married and has already experienced a live birth; the surrogate's husband joined in the agreement; the surrogate and her husband submitted to physical and psychological examinations; the intended mother cannot bear a child; at least one of the intended parents will be the genetic parent of any child resulting from the agreement; and all parties to the agreement meet the standards of fitness for adoptive parents. If a surrogacy agreement is not submitted for court approval, it will not be enforced unless the surrogate mother relinquishes her parental rights twenty-five days after the birth. A provision for compensation of a surrogate mother will not be enforced. Finally, Virginia imposed criminal penalties for accepting compensation to recruit a surrogate; however, a lawyer may be paid for legal services in preparing a surrogacy contract. Presumably, lawyers who arrange surrogacy agreements in Virginia will not bill their clients for bringing the parties together but for guiding them through the complexities of the new law.
One commentator has divided the surrogacy statutes of the dozen states that have them into three main categories: statutes that invalidate surrogacy agreements (e.g., New York); statutes that prohibit commercial involvement in surrogacy (e.g., New York and Virginia); and statutes that recognize surrogacy agreements (e.g., Virginia) (7). As noted, states that disagree on whether to permit surrogacy contracts may agree on barring commercial involvement in surrogacy.
Underlying this mixed response of the states is a debate between those who believe surrogate motherhood benefits all concerned and those who believe it treats babies as property for sale and exploits the surrogate's financial condition. Whatever the outcome of this debate in courts and legislatures, the successful voluntary conclusion of the great majority of surrogacy contracts in the United States ensures the practice will continue (8).
Assisted suicide awaits official acceptance
More than any philosopher, lawyer or popular writer, Jack Kevorkian - known as "Dr. Death" - has provoked public debate on assisted suicide in the United States. Kevorkian, a pathologist, has generated attention by apparently assisting the suicides of 19 individuals who were not his patients. He now risks criminal conviction for his efforts to promote the availability of an act which a majority of the public may approve and many physicians may perform discreetly, but which half the states prohibit. To date, Kevorkian's efforts to change public policy have been unsuccessful: no state has approved assisted suicide, and several states (including his own state of Michigan) have adopted or are considering laws to bar the practice (9).
The right of a patient or surrogate decision maker to refuse medical care (including food and hydration) was firmly established in the United States by the 1990 decision of the Supreme Court in the Cruzan case (10). Since that decision, some states have debated the procedures for allowing a surrogate decision maker to exercise the right on behalf of an incompetent patient (11). But the most important questions about the right to die that remain to be settled are whether, as a matter of constitutional law, the right to refuse care entails a right to receive assistance in committing suicide, and whether in the absence of a constitutional right to this assistance (or until the Supreme Court finds such a right), states should permit assisted suicide as a matter of policy.
Only one court has considered whether there is a constitutional right to assisted suicide. In an unusual 1992 case, a patient with incurable brain cancer wished to be frozen before his death so that his cryogenically suspended body could be reanimated when there was a cure for his disease. The patient asked a California court to protect the operator of the cryogenic preservation facility from subsequent prosecution for assisting his suicide. The court denied the request, and the patient appealed. The California Court of Appeal drew a distinction between withholding life support, which the patient had a right to direct, and ending the patient's life. In the latter circumstance, the court said, the state's interest in protecting society from abuses overrides the patient's right to end his life (12).
To the contrary, a 1992 note in the Harvard Law Review has argued that withdrawing life support and assisting suicide are not fundamentally different, and "the focus should be on the patient's desires and decisions, not the nature of the physician's act." The patient's right of self-determination does not cease at some "imaginary line" between withdrawing support and assisting suicide. The note recommends the involvement of courts for the limited purpose of assuring that the patient's decision is voluntary (13).
In a recent article (14), Yale Kamisar predicted the Supreme Court will not recognize a constitutional right to assisted suicide. He noted that the court characterized the right to refuse life support as a "liberty interest," not a "fundamental right," in the Cruzan case. This characterization makes state interference with the right to die easier to justify (15), and the Supreme Court will probably uphold a state statute prohibiting assisted suicide when the issue is presented to the Court - perhaps by Dr. Kevorkian.
Even if there is no constitutional right, however, states can sanction assisted suicide by law, as the Netherlands did earlier this year. Although American legislators have not accepted permissive legislation on assisted suicide, voters of two states had the opportunity to adopt such laws by initiative (a process in which the citizens themselves propose and vote on legislation). A month before the election in 1991, voters in the state of Washington heavily favoured Initiative 119 to permit assisted suicide and voluntary active euthanasia, but they defeated the initiative by a 5-to-4 margin in the election, possibly because the measure had insufficient safeguards against abuse (16). A year later, California voters favoured a similar measure (Proposition 161) in pre-election polling but defeated it in the election. Again, the lack of sufficient safeguards against abuse, such as a psychological exam or waiting period, may have caused the defeat (17).
Assisted suicide has raised a wide range of responses in America, from Dr. Kevorkian's unrestrained actions to adamant opposition from religious groups and medical associations (though individual physicians appear divided on the issue) (18). Philosophers disagree on whether there is (19) or is not (20) a significant distinction between withholding life support and ending a life at the request of a patient. The initiative elections in Washington and California indicate the public may favour assisted suicide but will not legalize it without safeguards from abuse. The Supreme Court is unlikely to resolve the issue. Assisted suicide will probably remain for some time in a murky area of unknown incidence, silent toleration, and no official sanction.
"Where is a genetics privacy law?"
When Congress first considered funding the Human Genome Project ("HGP"), concern was expressed about asking the American taxpayer to support a "science of inequality" that might be used as a basis for discrimination and raise other social issues as well. Acknowledging these possibilities, the HGP spokespersons pledged 3% of the HGP budget (21) to research on the social consequences of advances in genetics. The resulting program on the ethical, legal and social issues ("ELSI") raised by the HGP funds research projects on genetic discrimination, genetic privacy, and the implementation of genetic technology in health care. The ELSI program also funds public education activities, to promote informed decision making about genetic issues on the personal and societal levels. About $7 million per year is allocated from the HGP budget to the ELSI program.
The research and education segments of the ELSI program operate on the model of government science funding, that is, the agencies invite applications for grants related to ELSI and fund proposals on the basis of outside peer and internal program reviews. The choices of specific topics and methodologies are left to the applicants. Grantees include social scientists, lawyers, philosophers and theologians, physicians and other genetic service providers, educators, et al. The research projects are typically multidisciplinary and empirical, but some are conceptual studies. Education projects include high school curricula and two 8-part series for public television. Conferences and workshops have also been supported.
Unlike earlier bioethics policy efforts in the federal government, however, ELSI has no advisory commission. There is no entity that directs and reviews the ELSI research portfolio, determines the policy implications of the research, and makes recommendations to the appropriate authorities (22). But ELSI results are published: nearly 200 talks and articles funded by the program have been published in journals and book collections. Thus, like its science counterpart, the ELSI program adds to the body of knowledge. Like the results of scientific research, society may use the results of the ELSI program as it deems fit.
With the passage of time and money, however, questions about the role and accomplishments of the ELSI program are being raised from different quarters. In a recent issue of Science magazine, a prominent genome scientist asked "Where is a genetics privacy law?" after so many millions of dollars and years of effort have been devoted to the ELSI program (23). The scientist was frustrated by the lack of policy recommendations. Indeed, the ELSI program does not incorporate a formal policy-making process. It depends, ultimately, on the interests of academic researchers, which may not coincide with the needs of policy makers. Further, there is no entity to analyze the research and determine its implications for policy.
An advisory commission for ELSI may be the appropriate mechanism to direct the gathering and analysis of empirical data, and to develop policy recommendations. Whatever decision making mechanism is employed, data about individuals' responses to genetic technology - which is being generated by the ELSI program - will be required for policy-making in this area. Bioethics is, after all, a practical enterprise, not directed by the application of principles so much as it is revealed by the examination of facts.
1. Matter of Baby M, 537 A.2d 1227 (N.J. 1988).
2. S.B. 937 (1991-1992 Reg. Sess.).
3. Johnson v. Calvert, 851 P.2d 776 (Cal. 1993).
4. A recent analysis suggests that courts in surrogacy cases have ruled in favour of the intended parents because they are viewed as more closely representing the traditional family. See Dolgin,"Just a Gene: Judicial Assumptions about Parenthood" UCLA Law Rev. 40: 637 (1993).
5. N.Y. Consolidated Laws, Ch. 14, Art. 8, Sec. 121 et seq.
6. Code of Virginia, Title 20, Ch.9, Sec. 20-156 et seq.
7. Wadlington, "Contracts to Bear a Child: The Mixed Legislative Signals" Idaho Law Review 29: 383 (1992/93).
8. See Belkin, "Childless Couples Hang On to Last Hope, Despite Law" N.Y. Times, July 28, 1992; Johnson, Haynes, "Surrogacy Debated, But Still the Answer for Some" Chicago Tribune, January 17, 1993. Although Japan bars the implantation of in vitro fertilized eggs in surrogate mothers, there are reports of infertile Japanese couples going oversees to use surrogates. See, e.g., Anon., "4 Japanese Couples Try Surrogate Motherhood in S. Korea" Kyodo News Service (Sept. 15, 1993).
9. See Humphrey, "Time to Reform Law on Assisted Suicide" New York Times (letter, June 2, 1993). Kevorkian's own state of Michigan previously had no law barring assisted suicide but adopted such a law (section 752.1027, Mich. Comp. Laws Ann.) in response to his activities. Kevorkian has been charged under the new law with assisting two suicides, and a third is being investigated.
10. Cruzan v. Director Missouri Dept. of Health, 497 U.S. 291(1990).
11. See, e.g., In re Guardianship of Browning, 568 So.2d 4 (Fla. 1990); Guardianship of Doe, 583 N.E.2d 1263 (Mass. 1992); In re Guardianship of Crum, 580 N.E.2d 876 (Ohio 1991); In the Matter of the Guardianship of L. W., Incompetent, 482 N.W.2d 60 (Wisc. 1992).
12. Donaldson v. Lundgren, 4 Cal. Rptr. 2d 59 (1992).
13. Note, "Physician-Assisted Suicide and the Right to Die with Assistance" Harvard Law Rev. 105: 2021 (1992). The California court in the Donaldson case refused to "supervise" the patient's assisted death without legislative authorization. 4 Cal.Rptr. 2d at 64.
14.Kamisar, "Are Laws Against Assisted Suicide Unconstitutional?" Hastings Center Report 23(3) (1993).
15. Any "reasonable state interest" may justify interference with an individual's liberty interest, whereas a "compelling justification" may be required for the state to restrict an individual's fundamental right. See Robertson, "Cruzan and the Constitutional Status of Nontreatment Decisions for incompetent Patients" Georgia Law Rev. 25: 1139 (1991).
16. See Steinfels, "Beliefs" New York Times (Nov. 9, 1991). Steinfels reports that a nationwide poll showed 64 percent of the public favoured permitting assisted suicide.
17. See Reinhold, "California to Decide if Doctors Can Aid in Suicide" New York Times (Oct. 9, 1992); Jacobs, E. "Prop. 165 and Right-to-Die Measure Trail" Los Angeles Times (Nov. 4, 1992).
18. See Egan, "Washington Voters Weigh Aid of Doctors in Suicide" New York Times (Oct. 14, 1991); Reinhold, supra.
19. E.g., Callahan, "When Self-Determination Runs Amok" Hastings Center Report 22(2) 52 (1992).
20. See, e.g., Brock, "Voluntary Active Euthanasia" Hastings Center Report 22(2), 10 (1992).
21. This amount was later raised to 5% by the National Center for Human Genome Research. The allocation from the Department of Energy, which jointly funds the HGP, remains at 3%.
22. An ELSI Working Group of consultants, chaired by Nancy Wexier, has advised the funding agencies (Departments of Energy and Health and Human Services) on the general structure of the ELSI program and has undertaken certain initiatives, such as creating a task force on health insurance and recommending pilot studies on population-based screening for cystic fibrosis carriers. But the Working Group has not generally directed the grant programs or developed policy recommendations.
23. Maynard Olson, quoted in Roberts, "Taking Stock of the Genome Project" Science 262: 20, 22 (Oct. 1, 1993).
Preparation of this paper was supported by a grant from the U.S. Department of Energy.