The late Jonathan Mann famously theorized that public health, ethics, and human rights are complementary fields motivated by the paramount value of human well-being. He felt that people could not be healthy if governments did not respect their rights and dignity as well as engage in health policies guided by sound ethical values. Nor could people have their rights and dignity if they were not healthy. Mann and his colleagues argued that public health and human rights are integrally connected: Human rights violations adversely affect the community's health, coercive public health policies violate human rights, and advancement of human rights and public health reinforce one another. Despite the deep traditions in public health, ethics, and human rights, they have rarely cross-fertilized—although there exists an important emerging literature. For the most part, each of these fields has adopted its own terminology and forms of reasoning. Consequently, Mann advocated the creation of a code of public health ethics and the adoption of a vocabulary or taxonomy of “dignity violation”.

Professor Gostin is a leading authority on health law, whose writing and teaching are among the most authoritative in the United States, as exemplified by his recent work, Public Health Law: Power, Duty, Restraint. Gostin's article in this issue of the Journal of Law, Medicine & Ethics pays homage to Jonathan Mann (1947-1998) by expressing the debt he feels toward this extraordinary doctor and public health official with whom he had collaborated on several projects.

As many will remember, Mann held high-level positions at the Centers for Disease Control and worked on AIDS research in Central Africa before setting up the World Health Organization's Global Programme on AIDS, which he ran from 1986 to 1990. Thanks to his profound commitment and consummate communication skills, he achieved the unprecedented feat of raising the budget within two years to almost $100 million from the initial set-up of “himself, a secretary, and one typewriter,” as described by Daniel Tarantola.

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus (HIV) different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk.

How we integrate the astounding advances that genetics makes possible into our language, our conceptions of health and disease, and our systems to collect, control, and protect health-related information is a key question facing health law and policy-makers this decade.

For example, the prospect that all of us may harbor the genetic seeds of our own demise forces us to confront the blurring of the lines between “health,” “predisposition,” and “disease.” How will we modify our conceptions of health and disease in response to this new distinction?

That these questions must be answered using, at least in part, new approaches seems unassailable. Yet, we run the risk of becoming mired in an old debate—exceptionalism—in which we haggle over the precise nature and scope of the similarities and differences between genetic information and all other health-related information.

Those objecting to human DNA patenting frequently do so on the grounds that the practice violates or threatens human dignity. For example, from 1993 to 1994, more than thirty organizations representing indigenous peoples approved formal declarations objecting to the National Institutes of Health's (NIH) bid to patent viral DNA taken from subjects in Papua New Guinea and the Solomon Islands. Although these were not patents on human DNA, the organizations argued that the patents could harm and exploit indigenous peoples and violate their cultural values. NIH eventually dropped one of its patent applications.

On May 18, 1995, 180 religious leaders, led by biotechnology critic Jeremy Rifkin, held a press conference objecting to DNA patenting in Washington, D.C. In their “Joint Appeal against Human and Animal Patenting,” these leaders decried any attempt to patent nature. Some of the more outspoken members of the Joint Appeal likened DNA patenting to slavery, while others objected to treating human beings as marketable commodities. In his recent book, The Biotech Century, Rifkin rehashed the objections to DNA patenting voiced by members of the Joint Appeal.

Thirteen years ago, commenting on the treatment of the human body and its cell lines as patentable commodities, Mary Taylor Danforth wrote:

In his insightful article, David Resnik would have us travel further down the path of allowing the patenting of DNA in order to advance scientific research and the welfare of humankind. Dr. Resnik suggests that that the acquisition of such proprietary rights in DNA research must proceed cautiously

For more than twenty years, Opinion 6.01 of the American Medical Association's (AMA) Code of Medical Ethics has specified that “a physician's fee for medical services should be based on the value of the service provided by the physician to the patient.” In 1994, the AMA amended Opinion 6.01, adding a new statement that “a physician's fee should not be made contingent on the successful outcome of medical treatment.”

We believe that the amendment is wholly indefensible. Therefore, in this essay, we argue that the AMA should lift this prohibition and encourage the use of result-based compensation for medical services in appropriate circumstances.

The 1994 amendment dramatically changed the significance and scope of Opinion 6.01. Result-based compensation arrangements clearly satisfy the original version of Opinion 6.01 because they base compensation on the “value of the services provided … to the patient.” Yet, it is equally clear that result-based compensation arrangements violate the amended version of Opinion 6.01 because they necessarily make compensation “contingent on the successful outcome of medical treatment.”

David Hyman and Charles Silver are quite right. Opinion 6.01 in the American Medical Association's (AMA) Code of Medical Ethics is difficult to defend. Ties between compensation and outcomes need not mislead patients into thinking that results are guaranteed; they are widely used in other fields with considerable success, even if they have some disadvantages; they can potentially bring patients more actively into decision-making about whether and from whom to purchase which medical care; and, if carefully tuned, they can promote quality by aligning providers’ welfare more closely with patients’.

The purpose of this commentary is thus not to disagree with the fundamental thesis that result-based compensation arrangements (RBCAs) can be appropriate and useful in the health-care setting. Rather, the objective is to “cut the next swath,” so to speak. While Hyman and Silver are right that RBCAs have potential to do good, they may be overly optimistic about benefits, while underestimating the potential limitations and hazards.

Ever since the 1960s, when medical science became capable of prolonging the dying process beyond bounds that many patients would find acceptable, people have sought “death with dignity,” or “a natural death,” or “a good death.” Once debilitation from a fatal affliction has reached a personally intolerable point, dying patients have sought to control the manner and timing of death via diverse techniques. Some sought the disconnection of life-sustaining medical interventions, such as respirators and dialysis machines. Beyond freedom from unwelcome interventions, some patients intent on avoiding suffering sought access to pain relief medication—even in dosages posing some risk (perhaps even a certainty) of hastening death. Other dying patients sought access to deep sedation, even knowing that they would never emerge from the resultant unconsciousness. Still other patients voluntarily refused to eat or drink or to accept artificial nutrition and hydration.

In recent years, courts have increasingly found them-selves arbiters of disputes in the emotionally charged area of assisted reproductive technologies. Legal disputes are hardly surprising in the world of infertility medicine, where millions of patients spend billions of dollars in efforts to have a child. Increasingly, these efforts produce embryos that are frozen for later use, at once maximizing a couple's chances for success and minimizing the medical intrusiveness that necessarily accompanies most forms of assisted reproductive technologies. But with over 100,000 embryos in frozen storage in the United States and a divorce rate of 40 to 50 percent, it is not surprising that disputes over the disposition of these embryos are arising, causing the legal landscape surrounding these technologies to continue to expand.

Automobile insurance companies are joining the move to managed care in the hopes of reducing health-care expenditures arising out of automobile accidents. Industry interest is strong enough that large managed care organizations, such as Concentra Managed Care, Inc., and HNC Insurance Solutions, are beginning to offer their existing network of providers to persons seeking medical care for automobile accident injuries and their evaluation software to insurers.

While insurance companies have successfully pressed four state legislatures and one commissioner of insurance for authorization to offer consumers a managed care option in automobile insurance policies, these efforts have not gone unchallenged. Vocal opponents, primarily lawyer and chiropractic organizations, question whether persons injured in accidents will receive care when needed (especially if the accident occurs when the policyholder is away from home), what the quality of care received will be, and whether any savings will be passed on to consumers.

Pressure is mounting to hold researchers and research institutions accountable for the protection of human subjects. When subjects or their family members believe they have been injured, they are increasingly willing to file lawsuits. Recent cases indicate that institutional review boards (IREs) and their members may be pulled more and more into the legal fray.

On September 17, 1999, 18-year-old Jesse Gelsinger died while participating in research conducted by the University of Pennsylvania's Institute for Gene Therapy. Gelsinger was involved in a Phase I clinical trial testing a new approach to treatment of ornithine transcarbamylase deficiency (OTC), a rare metabolic disorder. Although infants affected by the severe form of OTC die shortly after birth, Gelsinger suffered from a relatively mild form. It appears undisputed that the cause of Gelsinger's death was not the disorder itself, but multiple organ system failure triggered by the virus used to carry new genetic material into his system.