In theory, a medical ethics review board should believe that research can be ethically conducted in the field of medicine it governs.
But Republicans’ anti-abortion policies led Trump’s government to appoint a fetal tissue research ethics board that believes fetal tissue research is inherently unethical. Now that board is refusing to sign off on funding for potentially life-saving fetal cell research proposals.
That’s bad news any day of the week, but it’s even more galling in light of the global pandemic that has killed off more than 170,000 Americans to date. By rejecting fetal tissue research wholesale, the Trump administration is cutting off a promising avenue of research into treatments and vaccines.
All because conservatives refuse to recognize the difference between an infant and a fetus.
The NIH Human Fetal Tissue Research Ethics Advisory Board reviewed the ethics of 14 proposals. In addition to the usual sorts of ethical questions inherent in medical research — can participants provide informed consent? Is the research justified? Does the process follow state laws and best practices? — submissions were expected to explain why the research could only be done using human fetal cells, how the researchers intended to minimize the quantity of cells used, and exactly how the cells would be obtained. If a third-party organization was providing the tissue, the researchers were expected to document that organization’s process for obtaining informed consent and restricting the use of tissue acquired through abortion.
The wording of the document detailing their recommendations suggests an assumption that all human fetal tissue would be obtained through an abortion and demanded that researchers explain why they could not limit themselves to cells obtained through miscarriage only. Proposals that involved tissue obtained from an abortion — tissue that would otherwise be thrown away — could also be rejected if the collection process would alter the method of abortion used.
While more information is generally better than less, the level of documentation required for this ethics review process serves one very important purpose: It provides a framework of information for the committee to pour through, cherry-picking justifications for denying proposals they’ve already decided they don’t approve.
Sure enough, when the votes came in, the board had denied ethics approval to all but one proposal — a study aiming to “obviate the need” for human fetal tissue altogether by proving alternative methods equally effective.
Looking at the board’s composition, that result should have been expected. The only surprise (if you’re still capable of being surprised by this administration) is that somebody managed to pass this board off as informed and impartial.
The 15-member board is chaired by Paige Comstock Cunningham, former president of Americans United for Life. Another board member, David Prentice, is the current vice-president and research director of the Charlotte Lozier Institute, a research organization with an anti-abortion agenda. (They claim the mantle of secular science, but let the mask slip with biblical references to the “fearfully and wonderfully made” human fetus.)
Other Lozier researchers involved in the ethics review board include a faculty mentor for a campus anti-abortion group, a member of the Pontifical Academy for Life, and an OB/GYN who has advocated for limiting abortion access, testifying before the Texas state legislature. Yet another board member is a prominent director for the National Catholic Bioethics Center. All told, 10 of the 15 board members have taken public positions against abortion and/or fetal tissue research.
While most of the board members are doctors or scientists, this constellation of affiliations makes it clear that their positions on the ethics of fetal tissue research are heavily informed by their politics and faith.
Only one member, Lawrence Goldstein, has ever participated directly in medical research using human fetal cell lines. He has denounced the entire review process under this board as “a travesty” engineered to prevent research from moving forward:
They [the Trump administration] handpicked a board that wouldn’t approve very much, if anything. And they got the outcome that they wanted… I tried to keep an open mind, let’s see what we get. And this is what we get. I was clearly wrong to defend the administration.
Other advocates of fetal-cell research say they anticipated this outcome, but they’re dismayed nonetheless. Despite being controversial, scientific research with fetal cell lines has an important place in medical history. The cure for polio discovered in the 1950s used fetal cell lines to cure a debilitating and sometimes fatal disease. Since the 1980s, researchers have been investigating fetal cell transplants as a potential treatment for such varied conditions as Parkinson’s disease, blood disorders, radiation poisoning, and diabetes.
Christine Mummery, president of the International Society for Stem Cell Research, calls the situation “a stark departure from the traditional objective review process” that maintains research ethics:
The evaluation process for research should be insulated from ideology and special interests. It is disheartening to see an ethics review perverted by an administration seeking to achieve a policy goal, a near ban on research with human fetal tissue… At a time when the US and the world should be employing every biomedical research avenue to fight the COVID-19 pandemic, a crucial tool for investigating viral diseases has been blocked by special interests.
It’s important to keep in mind that this ethics board functions to advise decision-makers, not to make decisions on its own. Health and Human Services Secretary Alex Azar could theoretically ignore some or all of their recommendations. But that would mean admitting that the board he convened was hopelessly biased, and it would incur the wrath of the anti-abortion Republican base.
Better to gamble the lives and health of millions than take a principled stand, I guess.
So much for ethics.
(Image via Shutterstock. Thanks to Scott for the link)