In a time when COVID-19 coexists with technological advances and never-before-seen discoveries in science and medicine, ethical questions arise daily.
Bioethicists will be the first to say that their job is not to tell patients or professionals what to do, but to lay out the options and help make informed, intelligent, and moral decisions. Whether the issue is end of life, gene editing, or who gets the first coronavirus vaccine, bioethicists are on the ground providing background, historical context and guidance on important and immediate questions that affect everyone’s lives.
Yet bioethics leaders at several premier academic institutions say that raising funds for bioethics is “hard, very hard” and “challenging.” Grants data from Candid confirms that view, showing just $7.7 million in support for work on bioethics in 2018.
Why is that? Is it because bioethics topics often regard life-or-death issues, and are controversial? Or because this area tends to fall between grantmaking programs and foundations? And even if there are good explanations for a lack of institutional support, why aren’t donors from such fields as medical research, technology or law—whose work is directly affected by bioethical issues—stepping up with major gifts?
How One Bioethics Nonprofit Raises Funds
Bioethics came to the fore in the late 1960s when it was recognized as an area of academic pursuit. Among its first funders were the Ford and Rockefeller Foundations, as well as the Kennedy family, according to Arthur Caplan, founding director of the Division of Medical Ethics at NYU Langone Medical Center. But philanthropic support for this field has never really blossomed, even as the questions with which bioethicists grapple have become steadily more urgent, involving issues like artificial intelligence, disability, genomics and now, the allocation of scarce medical resources during a global pandemic.
“Funding for bioethics is not easy,” said Mildred Z. Solomon, president of the Hastings Center, the world’s oldest bioethics research institute that addresses social and ethical issues in healthcare, science and technology. Despite its reputation, the center’s total philanthropic support amounted to just under $2 million in 2018. Solomon says that about half of the organization’s budget comes from individual donors and half from grants.
A big challenge for the center is that it’s unaffiliated with a university or medical center. “This means we have no monies from standing institutions, and are completely dependent on these two streams. We are the only freestanding bioethics research center in the country, so we have to be good at this,” she said. “One way we have been successful is to help foundations understand the connection between what they want to do and what we want to do.”
Solomon described the center’s individual donors as “very special people who recognize the power of ideas. Bioethics puts important ideas into the culture and provides a process where people with different opinions can talk to each other.” She added, “Bioethics shapes culture and shapes policy.”
Since March, the Hastings Center has pivoted to engage some of the pressing dilemmas raised by the coronavirus pandemic. “We are COVID-central, said Solomon. “We’ve produced an amazing amount of content in the last three months with a bioethics forum, our scholars have been quoted worldwide, and their remarks are aggregated on our site.”
It remains to be seen whether all this COVID activity by the Hastings Center will make it easier to raise funds.
A Big Player in a Small Field
The paucity of support for bioethics is underscored by the fact that there is just one private grantmaker in the U.S. solely dedicated to funding this field, the Greenwall Foundation, and its resources are modest. With assets of about $100 million, Greenwall awards approximately $3 million to $4 million annually to support its mission to expand bioethics knowledge and improve clinical, biomedical and public health decision making, policy and practice.
Founded in 1949, the foundation was originally focused on pediatric illness, scholarships and the arts. In the late 1980s, the foundation’s board decided to change its focus solely to bioethics research, where it felt it could have the most impact by investing in junior faculty who would become leaders in the field; today, there is a growing and continuing community of some 60 bioethics scholars. In 2013, the foundation added a second program called “Making a Difference in Real-World Bioethics” to resolve and impact emerging or unanswered bioethics problems in clinical, biomedical, and public health decision-making.
Like the Hastings Center, the Greenwall Foundation has been working to engage the many knotty bioethics issues raised by the coronavirus pandemic. Michelle Groman, the foundation’s new president, said one of the projects she is most proud of in the past year was a widely circulated paper by one of the foundation’s scholars that explored what would happen “if we ran out of ventilators,” which “influenced institutional and policy decisions as we faced the heights of COVID.” Groman said, “These are the issues where you just can’t avoid the ethics.”
Most bioethicists today work at universities and major medical centers. Yet, while many of those institutions have deep pockets and plenty of big donors, that doesn’t translate into ample support for bioethics work.
A case in point are medical schools that train tomorrow’s doctors—professionals who will be on the front lines of bioethical dilemmas. Tia Powell, director of the Montefiore-Einstein Center for Bioethics and Trachtenberg Chair in Bioethics, said, “There is so little funding for research and teaching at medical schools. Bioethics funding has become a huge problem. It helps to have a funded chair, but there are very few of these across the country.” Powell said her chair was made possible by the Trachtenberg family to honor the values of their young physician daughter who died from HIV. Named chairs at each of these academic institutions come with a different donation level and still provide only some of the needed funding.
While the Trachtenberg family clearly understands the importance of bioethics, donors to medical research institutions who’ve lost a loved one tend to be laser-focused on finding cures to the diseases that killed them. More broadly, foundations and major donors alike tend to be keenly interested in measurable impact—a mindset that might make it hard for them to see the importance of bioethics research.
Still, news headlines report daily that bioethics issues are growing more urgent in an era of crises and medical advances. Even as the field of bioethics struggles now, it seems primed to draw new support from tech leaders and pharmaceutical firms that do understand what’s at stake in debates over technology and morality. Donors from those industries should be eager to ensure that public policy reflects the best thinking that bioethics can provide.