Of all the institutions that have cracked or dissolved under our current, particularly contentious political moment, few went as unnoticed as the disappearance of the presidential bioethics council. President Trump failed to form a council when he was sworn in and President Biden has followed suit.
The silent disappearance of the presidential bioethics council breaks fifty years of tradition. Sadly, this break came at a perilous time for bioethics. At this moment, several bioethical debates are shaking the country’s political and moral foundations, such as the debates around transgender medicine and abortion policy in a post-Roe America.
The next presidential election marks an opportunity to restore the council. Once restored, the goal should be to depoliticize contentious and personal issues by entrusting them to thoughtful experts, namely, groups of stakeholders who will conduct research and propose solutions to the political bodies tasked with legislating these matters.
Recent history demonstrates the value of a bioethics council. President George W. Bush made his council a cornerstone of his administration and explained its utility in the executive order authorizing its creation. The executive order stated that “the Council shall advise the President on bioethical issues that may emerge” from advances in biomedicine. Its mission includes “inquiry into the human and moral significance of developments in biomedical and behavioral science and technology;” exploring the “ethical and policy questions related to these developments;” providing “a forum for a national discussion of bioethical issues;” and facilitating “a greater understanding of bioethical issues,” among other functions. Through this council, the Bush administration engaged some of the most pressing policy debates in areas from cloning to late-term abortion, IVF, and stem-cell research.
Before addressing how a future administration should view a bioethics council, it is important to understand Bush’s council in the context of scientific developments at the time, most notably, the cloning of “Dolly” the sheep in 1996. Some scientists thought cloning, and its related field of stem-cell research, could usher us toward a medical utopia. Others, such as the late Charles Krauthammer, who later served on Bush’s bioethics council, saw a dystopian hellscape on the horizon.
To gain a sense of the bioethical issues at stake and the panic they caused, one can turn to Krauthammer’s stunning piece from the summer of 2001 that responded to the cloning of headless animals. Krauthammer observed: “For sheer Frankenstein wattage, the purposeful creation” of headless animals “has no equal.” Krauthammer foresaw the logical consequence of the scientific development. He wrote that one need not “be a genius to see the true utility of manufacturing headless creatures: for their organs—fully formed, perfectly useful, ripe for plundering.” Krauthammer laid bare the stakes, claiming: “[H]umans are next.”
This makes today’s debates seem quaint. On one hand, scientists were proposing a solution to a host of human ailments. On the other hand, thinkers such as Krauthammer saw a world that treats human life like livestock: disposable and fit only to serve the wishes of the powerful.
As a result of such biomedical developments, President Bush accomplished a prerequisite of any bioethics council: he relentlessly articulated his moral vision on matters of bioethics to the American public. A month after Krauthammer published the article on headless creatures, Bush delivered his first televised address as president to announce the formation of his bioethics council. In it, Bush stated:
I strongly oppose human cloning, as do most Americans. We recoil at the idea of growing human beings for spare body parts, or creating life for our convenience. And while we must devote enormous energy to conquering disease, it is equally important that we pay attention to the moral concerns raised by the new frontier of human embryo stem cell research. Even the most noble ends do not justify any means.
Bush then made his vision clear, calling himself “a strong supporter of science and technology” and stating his belief that “they have the potential for incredible good.” Nonetheless, he worried “about a culture that devalues life” and noted that “while we’re all hopeful about the potential of this research, no one can be certain that the science will live up to the hope it has generated.”
Bush’s address to announce the formation of his bioethics council was not an isolated incident. He relentlessly promoted his vision throughout his two terms. For example, in the 2004 party platform, Republicans adopted Bush’s stance. Also, during his 2006 State of the Union Address, Bush stated:
A hopeful society has institutions of science and medicine that do not cut ethical corners, and that recognize the matchless value of every life. Tonight I ask you to pass legislation to prohibit the most egregious abuses of medical research: human cloning in all its forms, creating or implanting embryos for experiments, creating human-animal hybrids, and buying, selling, or patenting human embryos.
As a result of this fusion of political leadership and expert guidance—in the form of a bioethics council—Bush achieved some of these goals. In 2004, an appropriations rider prohibited the issuing of a patent “on claims directed to or encompassing a human organism.” This appropriations rider became law in 2011 as part of the America Invents Act. In 2002, Congress passed the Born-Alive Infants Protection Act and in 2004 the Unborn Victims of Violence Act, which “made it a separate crime to cause the death of or bodily injury to an unborn child at any stage of development in the commission of certain specified violent federal crimes.” In 2005, the Hyde-Weldon Amendment was included in the Health and Human Services appropriations bill, stating that no federal funding would be approved “for any federal agency or program, or to a state and local government” if they discriminate against organizations or individuals because they do not “provide, pay for, provide coverage of, or refer for abortions.”
As a final example, after Bush made the case in the State of the Union Address and following a recommendation from his bioethics council, Congress passed the Fetus Farming Prohibition Act, which banned the solicitation or receipt of human fetal tissue donated after a pregnancy was intentionally initiated to provide research materials, or derived from a human embryo or fetus gestated in the uterus of an animal.
The lessons of President Bush and his bioethics council do not suggest bioethics councils push these issues aside or decrease their intensity. The bioethical debates of the decade were brutal; Bush and his council were frequently attacked. However, the bioethics council model allows debate to be ushered through an institution designed to take opposing viewpoints of experts and average citizens alike and channel them into research that produces reports and legislative proposals. Demagogues and those looking to score cheap political points are stymied when a functional, highly engaged bioethics council is in place. This is because opportunists expose their ignorance or moral blind spots when deliberate research and debated proposals are put forth. Also, President Bush and his political allies allowed themselves to absorb the bruising political rhetoric, which created space for his council to operate one step removed from day-to-day bipartisan squabbling. His bioethics council was not beholden to the political mood of the moment or the popular morality of the time.
After a two-term hiatus, it is time for the next president to articulate his or her moral vision on bioethics and form a council to address the questions of today. What the next president should not do is create a new agency to address these matters. There are a few reasons why creating a new bureaucracy is unwise. Bush’s bioethics council addressed a few of them in the report Reproduction and Responsibility.
A new agency dedicated exclusively to monitoring or regulating this arena might ensure that all the relevant concerns are addressed. But the costs of such an agency, financial and otherwise, could be quite high . . . The potential wisdom or utility of such an agency would have to be judged in light of the tasks it would need to carry out. In purely institutional terms, designing and establishing it would be a complex undertaking.
Also, given what many believe to be the CDC’s and the FDA’s inadequate response to the COVID-19 pandemic, Americans would rightly be skeptical of these existing agencies’ abilities to navigate such difficult topics.
Creating a quasi-independent commission, like the Federal Trade Commission, can create similar hazards. Questions of bioethics rightly belong in the hands of our elected representatives, and such a commission would be a prime target for regulatory capture by the biomedical industry. The American system of medicine is also highly decentralized and is mostly controlled at the state level. A federal commission would struggle to regulate such a diffuse system of medicine.
So, what should a new bioethics council do? First, given today’s debates and our decentralized system of biomedical regulation, the council could survey the current regulatory landscape. For instance, concerning transgender medical care, a council could start by understanding the full scope of various networks of laws at the federal and state levels. And regarding burgeoning issues in the medical industry, a council could investigate how novel “treatments” effortlessly flow from the scientific laboratory to the doctor’s office with little public oversight or debate, while bioethics guardrails have not disappeared in others. Gene editing, for example, remains a bioethics issue in the minds of experts, policymakers, and average citizens.
Such cautious respect prevents cutting-edge technology from escaping the laboratory to America’s healthcare system, which can recklessly fuse consumer choice and medical fads. In no area is this more apparent than in the transgender debates of recent years. A generation ago, thinkers like Krauthammer were blowing the whistle on how emerging scientific developments threatened the existing moral framework for what constitutes medical care. Americans sorely need this proper balance restored for transgender individuals.
Before a new council can undertake such difficult work, though, political leaders must advance a new moral vision. Proposing a new vision is a topic for another discussion. However, Bush’s example could provide a workable roadmap. For instance, Bush emphasized the value of human life no matter its state or stage of development. For conservatives to re-embrace this vision would require a humane view of women, considering abortions and transgender people. Compassion would have to be substituted for a defensive culture war. However, it is vital to note that compassion does not require equivocation on certain truths. It simply means that the vulnerable deserve respect regardless of their life choices and particularly when facing a moral quandary.
Next, political leadership requires a cohesive, comprehensive view of medical care and disease. One’s medical care cannot come at the expense of another’s well-being. In terms of defining disease, in the 2018 book Medical Nihilism, Jacob Stegenga says one “account of disease holds that for a state to be a disease that state must both have a constitutive causal basis and cause harm.” For instance, there is no known biological basis for transgenderism; therefore, medical intervention is probably an inappropriate course of action. Stated plainly, cutting healthy flesh is not an appropriate treatment.
These are mere recommendations, but they give a sense of how a future bioethics council could approach issues and how political leaders can present a moral vision that applies across multiple debates. Regardless of one’s political or ideological presuppositions, most Americans should agree that our current approach to bioethics is lacking, due largely to the inability to view such debates as questions of bioethics. Instead, issues that are at once so personal and profound are used as wedge issues, culture war cannon fodder, smashmouth soundbites, and opportunities to ram through short-term partisan victories.
Americans deserve better. While these issues cannot simply be ignored or relegated to elite, unaccountable bureaucrats, we can chart a better way. Reviving the presidential council on bioethics could be one way forward.
Public domain image credit