Andrew Allen considers the impact of contemporary politics on fetal tissue research policy in the U.S. and warns that ethical decision-making about health is difficult when politics interferes.
Compared to adult tissue, fetal tissue is pluripotent and more easily-grown in a lab. These qualities have made fetal tissue vital to human medical research. Fetal tissue is an essential component in our understanding and treatment of many diseases, including polio, Parkinson’s, Alzheimer’s, spinal cord injuries, and even COVID-19 with the Johnson and Johnson vaccine. However, because some researchers initially derive cell lines from tissues of aborted or miscarried fetuses, much controversy surrounds the ethics behind the practice.
In Canada, for an institution to receive research funding from the federal government, a research ethics board must determine that the research meets federal guidelines. The 2018 Tri-Council Policy Statement requires that research dealing with fetal tissue must adhere to standards regarding the collection of the tissue, handling of associated personal information, and consideration of the tissue’s significance to the donor’s belief system. Similarly, research in the U.S. must meet a set of U.S. federal guidelines in order to receive funding. However, these guidelines have become politicized.
In June 2019, the Trump administration enacted a policy that required government fetal tissue research to pass an extra ethics advisory board review in order to receive funding. This policy resulted in the creation of the Human Fetal Tissue Research Ethics Advisory Board, which, during its first hearing in August 2020, recommended that Congress deny funding to 13 of the 14 research project proposals that were brought to the hearing. All 14 of these had already passed the funding review process required by the National Institutes of Health. The board cited insufficient ethical justification for most of the denied proposals. The only approved proposal that involved use of fetal tissue was for research into fetal tissue alternatives.
The logic on display in this hearing casts doubt on the legitimacy of the review board policy. Though the policy was reversed under the Biden administration in April 2021, it demonstrates how politics can warp sound ethical discourse. The rejections reflect a political bias against fetal tissue research that stems from anti-abortion special interests. According to Science, the advisory board was created with a membership of mostly white Christians. Ten of the fifteen members had spoken against fetal tissue research, abortion, and other related matters. Lawrence Goldstein, a board member who has participated in fetal tissue research, stated that the composition of the board was intentionally chosen so that most proposals would be rejected. The board was part of a rigged system to block fetal tissue research by using ethics policy as a weapon for meeting political goals opposing abortion.
Dov Fox and I. Glenn Cohen explain that these political goals exist in part because of a belief that the research encourages abortion. However, there is no evidence that being able to contribute to fetal tissue research encourages women to seek abortions. Furthermore, the research community already anticipated the possibility that the research might influence patient decision-making. The American Medical Association and Stanford University School of Medicine’s Lee Sanders and Thomas Raffin suggest that patients should not be offered payment for aborted tissue and that discussions about tissue donation to research should not occur before the abortion takes place. These suggestions build upon the Uniform Anatomical Gift Act, which prohibits any form of coercion that may influence an individual’s decision to donate their organs.
There are legitimate ethical concerns with fetal tissue research: for example, ongoing discussions of when the fetus is considered a person, fetal viability, and the concern over sufficient informed consent. Under the Assisted Human Reproduction Act, it is against Canadian law to create embryos in vitro merely for tissue harvesting. Even researchers who work with fetal tissue on a regular basis, such as Lishan Su at the University of North Carolina, say that “using fetal tissue is not an easy choice” and generally agree that they would use other methods were it not for the unique qualities of fetal tissue and the value of the research.
Though the Trump administration review board policy has been reversed, it demonstrates an important lesson regarding research ethics policy and politics. For meaningful ethical discourse to occur, policymakers, scientists, and the public must not conflate fetal tissue research with objections about abortion. As a parallel, look to the public health response to COVID-19, where some have politicized basic public health guidelines, describing them as government tyranny. Demonizing public health practices by portraying them as an attack on individual liberty is a form of dissent that endangers public safety. True ethical decision making is difficult when political ideologies get involved.
Andrew Allen is an undergraduate student in the Faculty of Science at Dalhousie University.