Hardly a week seems to pass without a major news story about another controversy in bioethics: A scientist in China uses CRISPR to produce genetically edited twins, an Italian surgeon recruits a potential patient for a human head transplant, a Nebraska woman gives birth to her own granddaughter.
These cases cry out for the wisdom of experts in medicine, law and philosophy — knowledgeable authorities who can shape public discussions and advise policymakers. And yet, more than two years since President Donald Trump’s inauguration, the United States remains without a bioethics commission.
Bioethics commissions, usually formed on an ad hoc basis and limited in duration, have an impressive 45-year track record of generating valuable guidance. The first of these, established when President Richard Nixon signed the National Research Act, was the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1974-1978). Operating in the wake of several disturbing research scandals — most notably, the notorious Tuskegee syphilis experiment — its best-known endeavor was the production of the Belmont Report, outlining the principles for human subject research that continue to govern scientific investigation. That commission was succeeded by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1978-1983), which, under Presidents Jimmy Carter and Ronald Reagan, issued a wide range of reports including Defining Death, a seminal document that underpins the widespread acceptance of “brain death” and the modern organ donation system.
Presidents Bill Clinton, George W. Bush and Barack Obama all appointed blue panel advisory commissions on bioethics during their tenures. These panels have not been without controversy. Shortly after not being reappointed to the President’s Council on Bioethics in 2004, Nobel Laureate Elizabeth Helen Blackburn criticized the panel for favoring Mr. Bush’s conservative views on stem cell research and abortion. However, support for the concept of a federal bioethics commission has historically proven bipartisan. While Republicans and Democrats often disagreed vehemently on who should serve on such panels and what controversies they should address, a broad consensus existed for the notion that these challenging issues benefit from the input of leading thinkers in the field. For the most part, even when these panels tilted ideologically, they contained prominent scholars and practitioners — conservatives like Leon Kass and Charles Krauthammer or liberals like R. Alta Charo and Anita Allen.
Bioethics commissions have extraordinary potential. When used to explore complex issues at the nexus of medicine and technology, and then to stimulate discussion and consensus, they can prove invaluable tools.
The absence of such guidance should alarm us. In “The Death of Expertise” (2017), Tom Nichols wrote that these “are dangerous times. Never have so many people had access to so much knowledge, and yet been so resistant to learning anything.” A more generous commentary on our era might be that there is too much complex information for ordinary people to process without some degree of guidance and curation — especially in areas like genetics and robotics.
President Trump has the authority to appoint a bioethics commission, and he can largely appoint anyone he wishes, confined only by a 1972 statute requiring that his panelists be “balanced in terms of the points of view represented.” Such a commission will only have credibility if it represents a wide diversity of thought and experience. The experts may not agree often, but when they do, their commission will speak with authority. And even when they do not, their discussions and debates may help us all think more clearly.
Dr. Jacob M. Appel is director of ethics education in psychiatry at the Icahn School of Medicine at Mount Sinai.
