Deciding whether to donate fetal tissue for research

Human fetal tissue (HFT) has played a pivotal role in many areas of biomedical research. Since its inception, HFT research has been a topic of ethical debate and specific regulation due to its link to abortion. To date, the ethical debate surrounding HFT donation for research has proceeded with limited empirical data to guide policy decisions. Current regulations are designed to minimize the possibility that HFT donation could impact the decision of whether to have an abortion by requiring that clinical consent for abortion be obtained prior to discussing research opportunities. Despite these timing restrictions, questions continue to be raised about the validity of informed consent for HFT research. We sought to collect empirical data to inform the policy debates by directly querying the experience of pregnant women asked to donate HFT for research.

We conducted qualitative interviews with 51 women who chose (n = 40), or declined (n = 11), to donate HFT. Recruitment challenges and high attrition impacted the number of participants we were able to interview who had declined to donate.

Results revealed that none of the interviewees felt pressured to donate, and no one objected to being asked to participate. The majority of those who chose to donate HFT felt invested in the research and motivated to learn results. Participant feedback about the consent process, however, converged on a desire to learn about the option of HFT donation earlier in the appointment to allow for more time to consider research participation. Limitations include that the study took place in a single US state and results may differ in other jurisdictions.

We conclude with recommendations for policy amendments that could improve the experience of potential participants asked to donate HFT for biomedical research.