FEATURE — Winter 2003

Clarifying the Convergence of Biotechnology and the Law

An expert in bioethics, Professor Rebecca Dresser explains the complexities of biomedical research and policy to both medical and law students.

by Judy H. Watts

Not long after bioethicist Rebecca Dresser was appointed to the President's Council on Bioethics in January 2002, she decided to reread Brave New World, Aldous Huxley's 1932 novel about a totalitarian world based on biotechnology. The title alone has become a catch-phrase for bewilderment and apprehension in the face of overwhelmingly rapid advances in science and medicine (even a link on the council Web site refers to "brave new biotechnology").

Although Dresser firmly separates contemporary facts from the book's dark fiction, she says certain concerns are appropriate. "Much new knowledge today is related to human health and offers a great deal of hope," says Dresser, the Daniel Noyes Kirby Professor of Law and professor of ethics in medicine. "On the other hand, in many areas there is reason to worry that we might not know how to use that knowledge with wisdom. In the past, humanity has not always done a great job in that respect."

Still another concern is the fact that many people, who unwittingly depend on scant or dubious public information, become intensely alarmed without understanding the reality. Too often, cloning, genetic engineering, and other infant biotechnologies are reported in a superficial, unbalanced, or sensationalistic way, followed by barrages of media speculation that hint at an imminent nightmare.

Even worse, says Dresser, misleading media accounts can disrupt medical treatment and raise cruelly unrealistic expectations among patients and families. In her book When Science Offers Salvation: Patient Advocacy and Research Ethics (Oxford University Press, 2001), she discusses an article by a New York Times science reporter that because of its front-page position and "enthusiastic tone ... suggested a genuine breakthrough in cancer treatment." Qualifications farther down in the piece were ignored in most later news coverage, and the original story drew a maelstrom of protest from the medical community, responsible journalists, and patients, whose sudden hopes had been destroyed.

The incident, continually repeated in kind, points up several of Dresser's deepest convictions: that people must develop a basic understanding of biology and other sciences; that it is imperative to understand the issues surrounding biomedical research; and that people must realize that investigation and discovery processes are very uneven, slow, and unpredictable. Unfortunately, collective misconceptions now exist; for example, some people (including some impatient members of Congress and some excessively optimistic prospective research-trial participants) assume that a new development, such as stem-cell research, means that a cure for diseases such as Alzheimer's is only a year or two away—whereas the new science is actually in very preliminary stages.

Illuminating issues

Examining the interests of people affected by medical and scientific research, practice, reporting, and policy is Rebecca Dresser's life work. A 1979 graduate of Harvard Law School who has been at Washington University for six years, Dresser has written or co-written three books, 17 law review articles, 69 other scholarly articles and book chapters, and numerous letters, reviews, and commentaries. She is also a fellow of the Hastings Center, a highly respected bioethics research institute in Garrison, New York, and she is active in numerous other areas of her profession.

Dresser's extensive scholarship focuses on research and policy, assisted reproduction, and the end of life. But she maintains that "by far, the major ethical issue we [in this country] face is access to health care. It is the elephant in the room."

Dresser continues: "Compared to other developed countries, we are not doing a good job of delivering proven health-care benefits to our people. If we provided access to just the interventions that we know are safe and effective, many lives could be extended, the quality of life would be better, and we could implement better prevention measures and do all sorts of great things! That we are not is disconcerting and irrational."

Professor Rebecca Dresser teaches both in the law and medical schools. Above, she is teaching "Responding to Medical Mistakes," a class from The Practice of Medicine course, which is taught in small groups with different faculty serving as leaders, for first- and second-year medical students. Dresser is the content leader for the ethics and health policy section of the course.

Dresser's desire to examine the interests of people of every station and situation is illustrated in her writings about advance directives, often called living wills. In "Precommitment: A Misguided Strategy for Securing Death With Dignity," an article published in Texas Law Review [81:1823-47, 2003], she argues against the popular idea that people can, while they are still competent, instruct others in an informed way about how they want to be treated in the future.

Among advance directives' many practical problems (all of which Dresser examines in her article) are that most directives contain vague information and that the people who create them often understand only dimly what they are deciding. "In particular, they may not envision how they could experience their decisions in a future incapacitated state." Few people who categorically ban the use of a mechanical ventilator, for instance, consider that in some cases the device can restore normal functioning if used for a very short time.

People also tend to do "a poor job of predicting their preferences in situations they have never experienced." Viewed in terms of the best interests of the patient, advance directives about dementia can come to occupy a shaky ethical position. "Many dementia patients are quite content much of the time," Dresser explains (rightly noting that none of us is content all the time). "The patients have a good quality of life, often finding pleasure in simple activities, if they have good care. It is the families who suffer the most."

Another of Dresser's interests is the potential role of patient advocates, a "fascinating feature of the contemporary research landscape." In her most recent book, she analyzes this phenomenon, which followed the successes of HIV/AIDS activists, in hopes of building a foundation for future interdisciplinary inquiry. The interest is consistent with her faith in the fundamental wisdom of ordinary citizens. "I personally am very much in favor of a large component of people who are not from a scientific or medical background being involved [in a regulatory body] ...," she stated in the proceedings of the President's Council on Bioethics [June 20, 2002, session on human cloning and public policy options]. "I do think that there is an important place for ordinary people ... who do not represent one interest group yet are thoughtful, involved, and interested in moral questions ... ."

Bridging disciplines

Rebecca Dresser occupies a unique role at Washington University as a living bridge between the very different traditions of scholarship, teaching, and service at the Schools of Law and Medicine," says Joel Seligman, dean of the School of Law and the Ethan A. H. Shepley University Professor. "She has been invaluable for her ability to place complex questions that involve law and medicine in a thoughtful and nuanced dual context."

In her medical- and research-ethics classes in the School of Medicine, Dresser gently pushes her first- and second-year students—who are immersed in tradition and mission. On patients' behalf, she teaches medical students to analyze issues from other, non-medical perspectives. "Rebecca is a great addition to the medical school," says Stephen S. Lefrak, professor of medicine. "She brings the presence of a national figure in her field and has made great contributions to the medical students' ethical education. She continually challenges them—and in a highly collegial way!"

Speaking for the School of Law, both Dean Seligman and Susan Frelich Appleton, the Lemma Barkeloo and Phoebe Couzins Professor of Law and former associate dean, praise Dresser's collegiality and service as well. "As a colleague, Rebecca is extraordinarily supportive, hardworking, and wise," Seligman says.

For a number of years before Dresser came to Washington University, "we had been talking about having someone who could connect the law and medical schools," Appleton adds. "Rebecca not only filled this need; she exceeded our expectations."

Informing opinions

But how are people to meet their ethical obligation: to put forth the diligent effort necessary to be knowledgeable, and especially at a time when cascading biotechnological discoveries demand highly informed voters? One place to start, Dresser suggests, is at the President's Council on Bioethics Web page at www.bioethics.gov. There, transcripts of meetings are available together with reports; the archives of the previous president's commission; background material; a virtual bookshelf of poetry, prose, and fiction; and related national and international sites.

"The cloning report [on the site] will be used in a number of university classes, and I think that's great," says Dresser. "These national commissions have their greatest impact by creating thoughtful, well-written documents that cover a range of positions and perspectives. By understanding others' points of view, each person who reads these reports can better formulate his or her own position. Decisions about how all our emerging new knowledge is used shouldn't be made just by experts."

Judy H. Watts is a free-lance writer based in Santa Barbara, California, and a former editor of this magazine.