When I close my eyes and dream of what’s possible for the new US administration, I imagine a lot of changes. In many ways, the dismantling of norms of the American establishment has created an opportunity to look forward, and reimagine ways to make it even better than business as usual. One of the major changes I imagine is a new, independent body within the government that deals specifically with the many nuanced ethical issues emerging with biotechnology and medicine.
I imagine a bioethics commission that stands apart from whoever happens to sit in the White House. It would be an independent body, like, say, the Federal Communications Commission, whose leadership is appointed by the president and approved by Congress. Recommendations from this bioethics commission could work on their own timeline, insulated from the news cycle and without being beholden to political theater.
I believe that if such a body had already existed, it would have buffeted the nation against the politicization of the coronavirus, offered a counterweight to the bungled response, and could have saved lives. And I believe it could help prepare the American public for the slew of ethical debates we face as trends in biotech, healthcare, and social justice come to a head.
Putting forward the dream of a new commission may sound far-fetched, but it’s not, actually. Other countries have freestanding bioethics councils housed within ministries of health. Or in the United Kingdom, for example, the Nuffield Council on Bioethics stands independently and works with Parliament and the public British public to parse bioethical issues.
In the US, bioethics is decentralized. There are groups within nongovernmental organizations like the National Academies of Medicine, centers for academic scholarship such as the Hastings Center. The National Institutes of Health have their own bioethics group.
There have also been presidential and congressional bioethics councils made up of clergy, scholars, and interested lay people who debate critical issues in medical research and emerging technologies, but these have been flawed. They convene to advise on a particular matter at the behest of the governmental branch, and just as quickly disband after they report back, or the president’s term ends.
The presidential commissions on bioethics serve at the pleasure of the president and advise on how we might regulate (or consider regulating) ethically murky terrain in the biosciences. Previous commissions have authored reports on brain death, embryonic stem cells, synthetic biology, research using human subjects, and other topics.
Over the last 50 years, these bioethics councils have offered a mixed bag of advice that often reflects the interests and politics of those who commission them. For example, the Obama Presidential Commission for the Study of Bioethical Issues delivered ten projects, many of them highly useful, including one on advances in neuroscience. The George W Bush-appointed Council on Bioethics took an extreme position on stem cell research.
Congress has also set up a few of its own commissions, with varying results, including the failed 1988-1990 Biomedical Ethical Advisory Committee. The group had only two meetings before getting stuck on abortion issues and running out the clock on their funding without writing any reports.
It surprised no one that Trump failed to commission a bioethics council at all. Thankfully.
Ultimately, I think we need a bioethics commission that reflects a 21st century American public, that can set its own agenda, and be ready to spin out expert working groups to take up urgent issues, or organize longer term projects to advise on developments that emerge over decades.
We face many urgent issues, specific problems that require expert input and a quick turnaround because technology is moving swiftly and regulations are lacking. Topics might be artificial intelligence in hospitals, guidelines for minimum levels of pandemic preparedness, or repeat issues like the nuance of stem cell research. These groups would be empowered to recommend specific action to Congress or other regulatory bodies, including within the private sector, so that new technologies could be responsibly considered as they emerge without impeding innovation.
On the other hand, longer-term problems call for a different strategy. The US faces deep and complex issues of justice in biomedicine. The commission should be convened to deliberate on topics that have bearing on the long-term future and that require an interdisciplinary lens and strategic thinking, such as pharmaceutical pricing, medical deserts, and genetic engineering of human embryos.
A standing body can build trust over decades, as opposed to presidential-appointed commissions, which have the default position of being inherently politicized. Trust enables a standing body to shoulder moral responsibility for the difficult choices lawmakers must make, but which are sometimes unpalatable for elected officials constantly embattled in the 24/7 election cycle. By putting trust and responsibility elsewhere, Congress and the president can allow a commission to enact real progress.
The commission would also be responsible for education and outreach on the issues. We desperately need a group of experts to parse bioethical issues and translate them into popular culture. Bioethicists have a responsibility to lead the conversation about our biotech future.
We can fix the crisis of distributive justice in our health system, but not with the tools we have now. Maybe this is all a fever dream from the stress of the election, but when I close my eyes, I can see us doing better.
Special thanks to:
Holly Fernandez Lynch, University of Pennsylvania
Craig Klugman, DePaul University
Kayte Spector-Bagdady, University of Michigan
Elisa Eiseman, UK Science and Innovation Network
Dov Fox, University of San Diego
Cite This Essay
Pearlman, Alex. “Americans Deserve a Bioethics Commission.” Biodesigned: Issue 4, 23 November, 2020. Accessed [month, day, year].
