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Ethics committees: from ethical comfort to ethical cover.

Fifteen years ago, my first column was entitled "In re Quinlan: Legal Comfort for Doctors." [1] The subtitle referred to the New Jersey Supreme Court's suggestion that instead of bringing cases like Quinlan to court, families and physicians should rely on a hospital ethics committee. The court based this recommendation on the suggestion of a Texas pediatrician, Karen Teel, that a committee "composed of physicians, social workers, attorneys and theologians" could help to diffuse the "professional responsbility for decision...." I was unenthusiastic about the New Jersey solution, nothing that "the idea seems to be that all feel more (ethically?) 'comfortable' with decisions thus arrived at for which no one individual is seen as responsible and for which no individual can be held legally accountable."

Although the Quinlan case has been the touchtone for legal and ethical discussions of the right to refuse medical treatment for the past fifteen years, no other court has delegated immunity-granting authority to an ethics committee. On the other hand, the strategy of using ethics committees to provide "comfort" for physicians and others worried about either legal liability or public reaction has prospered. "Ethics committees" have grown from an anomalous entity to provide ethical comfort to a few, to an almost standard entity to provide ethical cover for many.

Without the threat of legal liability and community disapproval (which could lead to new laws), ethics committees would probably not have developed at all. Law and ethics are distinct, although related, activities. The law is mandatory, setting standards that can only be breached at the risk of civil or criminal liability. Ethics is aspirational, setting forth universal goals that we should try to meet, but suffer no temporal penalty for falling short of. Ethicists often criticize the law as too blunt, as scaring people unnecessarily, as interfering, and as counterproductive. All of these criticisms are sometimes fair. Nonetheless, over the past two decades the greatest force propelling bioethics in the U.S. has been the law.

The History of "Ethics Committees"

In the 1960s some states required that hospital review committees approved any abortion before it could be legally performed. And when kidney dialysis began, and there was a shortage of dialysis machines, some hospitals set up committees to decide which of the competing candidates would receive dialysis. Roe v. Wade and its companion case Doe v. Botton ended the abortion committees, and both public reaction and the End-Stage Renal Disease Act ended the dialysis patient selection committees. Although there have been periodic attempts to use similar "ethics committees" to make decisions for individual patients (for example, psychosurgery committees), prospective decisionmaking by committee for individual patients has never held wide support either in the medical community or the public.

Infant Care Review or "Baby Doe" committees were established in many neonatal ICUs across the country as a direct response to the Reagan Administration's Baby Doe regulations. Under the threat of intrusive federal investigations, the American Academy of Pediatrics and others recommended an alternative: hospital-based committees that would be available to review contested decisions to withdraw treatment from handicapped newborns. Many of these committees have survived, even though the federal Baby Doe regulations did not.

Institutional Review Boards (IRBs)

The most longstanding "ethics" - type committee is the Institutional Review Board, or IRB. This committee was created by law, and specific federal regulations govern its conduct. In the 1960s, when such committees were rare, they were usually designated as human studies committees, or human subjects committees. In the 1970s their name was changed to "institutional" committees--and this has always seemed just right, because the primary function of the committee has become to protect the institution, and its membership is almost exclusively made up of researchers (not potentials subjects) from the particular institution. These committees have changed the face of research in the U.S. by requiring investigators to justify their research on humans to a perr review group prior to recruiting subjects. But this does not mean that they have made research universally more "ethical." In at least a few spectacular instances, these committees have provided ethical and legal cover that enabled experiments to be performed that otherwise would not have been because of their potentially devastating impact on human subjects. The most dramatic examples are the experiments with the permanent artificial heart at the University of Utah and Humana Heart Institute in Louisville, and the Baby Fae experiment at Loma Linda. The success of IRBs can be traced primarily to their very specific mandate, their standards of decision-making (spelled out in federal regulations), and their support by the medical and research-funding communities. [2] Their failures can generally be traced to an overidentification with the perceived needs and interests of the institution, and with lack of expertise concerning particularly novel or complex research proposals.

Institutional Ethics

Communities (IECs)

Unlike IRBs, IECs have no standard mission and operate under no governing regulations. Since they have no standard mission, and vary widely in terms of purpose, composition, authority, and resources, they are also impossible to evaluate. Insofar as their primary mission is to protect the institution by providing an alternative forum to litigation or unwanted publicity, the term "ethics" is inappropriate, and the committee should be called a "risk management" or a "liability control" committee.

Like all of the previous committees that could be labelled ethics committees, their primary preoccupation has been to respond to legal changes and challenges, rather than to do anything a philosopher might label "ethics." Many such committees, for example, have drafted their institution's policy on such issues as brain death, the withdrawal of life support, and the implementation of required request laws. Other ethics committees see their primary function as staff education. This is entirely laudable, and ultimately may be the most effective way of modifying behavior.

A few of these committees consult in individual cases brought to them. This is probably what they are least suited for. Consultations are almost always better when performed one-on-one, and this is doubtless why the ethics consultant is replacing the ethics committee in this role. If they are to provide a forum for dispute resolution, ethics committees must follow some basic due process guidelines. Once these are provided, however, the committee becomes a mini court (of the kind envisioned by the Quinlan court) and both its procedures and the substantive rules it applies are likely (and appropriately) to be much more legal in nature than ethical. This helps explain why law consistently dominates ethics in the institutional setting, and why IECs can seldom hope to aspire to anything higher than the lowest common denominator the law allows. On the other hand, ethics committees can function as simply as neutral forum for discussion in attempting to resolve disputes--but in this case too the "ethics" label seems misleading.

Professional Organizations and

Ethics Committees

Ethics committees have also become an integral part of a number of professional medical organizations. The American Academy of Pediatrics was the moving force behind the "Baby Doe" ethics committees, and has its own AAP ethics committee as well. Similarly, both the American College of Obstetrics and Gynecology (ACOG) and the American Fertility Society (AFS) have their own ethics committees. These two organizations announced early in 1991 that they intend to cosponsor a national ethics committee that will be responsible for, among other things, suggesting guidelines for human embryo research. Since the federal government abandoned its support for the Ethics Advisory Board in 1980, there has certainly been a need for such a group. Whether ACOG and AFS are the proper vehicles to sponsor it, however, is a more difficult question. In seeking to answer it, we can review how each organization used its own ethics committee in the recent past.

The AFS set up its ethics committee, composed almost exclusively of its own members, to make recommendations about the new reproductive technologies its members use. The committee was well aware that the central and most contested subject for recommendations was the status of the extracorporeal human embryo and what could and could not ethically be done to it. Rather than build on previous studies, like that of the Ethics Advisory Board, England's Warnock Commission, or Australia's Waller Commission, the AFS ethics committee opted to "solve" their members' problem by redefinition. The committee decided that extracorporeal human embryos were not really embryos at all, but were "preembryos," an invented term for what had previously been called pre-implantation embryos. The committee's definition of this neologism is "a living, genetically unique entity with a statistical potential to implant, if exposed to a receptive uterus, and to be delivered as a newborn infant." The embryo, on the other hand, is described as "far more complex" and giving rise to "the rapidly growing and maturing fetus." [3] All this would seem unimportant wordplay, except that such redefining of a preimplantation embryo permits the committee to tell its members that virtually anything goes with these now nonembryos:

Currently, the responsibility for establishing policies on the transfer or nontransfer of preembryos lies with the programs that offer medical assistance in reproduction. Each program should develop and announce to candidate couples explicit policies on the options of transfer, donation, preembryo research, storage, and discard. [4]

This basic "recommendation" is repeated in the sections on cryo-preservation of embryos and research on embryos.

ACOG's ethics committee meets more regularly than AFS's, but develops much shorter policy opinions--usually three pages long--for its members. Its most recent opinion, in April 1991 (no. 94), is on "Multifetal Pregnancy Reduction and Selective Fetal Termination." Like embryo research, this topic is highly controversial, and one in which national policy guidelines would be highly desirable. ACOG's very able, but primarily physician-composed committee worked on this policy for years, and did its homework. The committee properly distinguished multifetal pregnancy reductions (usually the by-product of fertility drugs), and selective fetal termination (when one of two or more fetuses is diagnosed as having an abnormality). Nonetheless, ACOG's ethical "bottom line" is the same as the AFS's: its member practitioners could "ethically" do whatever they and their patients decided in each case. For multiple pregnancy reduction, "the issue of patient choice and physician participation and consultation will need to be analyzed individually." And for selective fetal termination.

Any decisions to select among fetuses will be considered ethically questionable by some persons. But for others, the benefits in selecting among fetuses ought to be carefully balanced against the potential risks and losses involved. Ethical justification for the use of selective termination in individual instances will rest on this balance.

Both the AFS and ACOG committees probably did and best they could. But both wound up not with ethical statements at all, but with practice platitudes that supported their members' business practices by saying they should continue to do whatever they thought right. In other words, there are no "right" or "ethical" answers, there is no "better" or "best" way to practice, there is only the lowest common practice denominator, which will be supported by your organization's ethics committee, and this support should give you some "cover" for your practice.

The ACOG-AFS joint venture may be a genuine attempt to move from a professional support groups function to an effort to grapple with the multitude of ethical issues involved in the new reproductive technologies and embryo research. But skeptics can ben forgiven for seeing little more than an attempt to continue business as usual under the "ethical cover" of a high-profile committee.

Ethics at the National Level

On a national scale the Human Genome Initiative's pledge of using 3 to 5 percent of its budget to fund legal and ethical studies is the first national research effort to take law and ethics seriously from the outset. This is certainly good news, and could be a useful model for all public funding of research. Nonetheless, it must be recognized that such direct funding runs the same risk of coopting ethics for expedience. At a conference on the HGI held in April 1991 at the New York Academy of Medicine, for example, all of the scientist speakers insisted both that ethics was being taken care of by this funding and that HGI itself was no longer stoppable. In other words, the one ethical question not open for debate was wehther the HGI should continue at this time. At the same meeting (and at others as well) the scientists also abandoned the rhetonic that had proclaimed the HGI the "holy grail" of molecular genetics. Instead they are noew insisting that it's simply "building infrastructure" and should thus not be a cause for concern or special ethical/legal attention. Oversimplified to be sure, the message was: leave us alone to do our science and we'll cut you ethicists in (a bit) on the action.

The scientists may, of course, be correct. But they have not yet made a convincing case that the HGI is the highest priority in medicine or molecular biology, deserves a privileged status, and is not fair game for ethicists and social policy thinkers who question its current pace or the potential problems with the application of its likely products. We can be flattered that the program's sponsors are running for ethical cover without being coopted into providing it before the analysis is performed.

Rethinking the Role

When the case of Nancy Cruzan, a case substantially identical to the Karen Quinlan case, was reviewed by seventeen judges, including those on the U.S. Supreme Court in 1989 and 1990, not one even mentioned ethics committees. It is good that ethics committees are no longer considered legal agents by judges, and it would be better if lawyers (and legal considerations) were removed from them altogether. In rethinking the proper role of ethics committees, it may be useful to return to the 1970s and Alexander Solzhenitsyn's 1978 commencement address at Harvard University. Solzhenitsyn insisted that although a society without an objective legal scale is "terrible," one with no other scale than the legal one "is not quite worthy of man either":

A society that is based on the letter of the law and never reaches any higher is taking small advantage of the high level of human possibilities. The letter of the law is too cold and formal to have a beneficial influence on society. Whenever the tissue of life is woven of legalistic relations, there is an atmosphere of mediocrity, paralysing man's noblest impulses. [5]

Setting up an additional bureaucratic entity called an ethics committee to make legal pronouncements can only make medicine more legalistic and impersonal. Moreover, encouraging a group of lay people to attempt to practice law makes no more sense than encouraging a group of lawyers to attempt to perform surgery. What we might try instead is to engage in a real effort to see if multidisciplinary committees can "do ethics." Good ethics committees begin where the law ends.

George J. Annas is Utley Professor of Health Law, and director of the Law, Medicine and Ethics Program, Boston University Schools of Medicine and Public Health.

References

[1] George J. Annas, "In re Quinlan: Legal Comfort for Doctors," Hastings Center Report 6, no. 3 (1976): 29-31.

[2] See generally Leonard H. Glantz, "What Lessons Ethics Committees Can Learn From IRBs," in Institutional Ethics Committees, ed. R. Cranford and E. Dondera (Ann Arbor, Mich.: Health Research Press, 1982).

[3] Ethics Committee of the American Fertility Society, "Ethical Considerations of the New Reproductive Technologies," Fertility and Sterility 53, no. 6, supp. 2 (1990):34S.

[4] AFS, "Ethical Considerations," p. 36S.

[5] Alexander Solzhenitsyn, "The Exhausted West," Harvard Magazine, July-August 1978, p. 22.
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Author:Annas, George J.
Publication:The Hastings Center Report
Article Type:column
Date:May 1, 1991
Words:2591
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