Fetal tissue donation for research at the time of abortion: A qualitative study of individuals who experienced an abortion in Hawaii in 2018-19.

OBJECTIVES

This qualitative study explores how individuals recently experiencing abortions feel about donating fetal tissue for research. In addition, we sought to identify motivating or discouraging factors that influence decision making for these individuals.

STUDY

DESIGN

We recruited individuals living in Hawaii who reported undergoing an abortion in the previous 6 months for one-on-one semi-structured interviews as part of a broader study investigating views on peri-abortion research practices and protections. We devoted approximately 15 minutes of each 1-hour interview to discussing the donation of aborted fetal tissue for research. We double coded transcribed interviews and identified themes related to fetal tissue donation.

RESULTS

We interviewed 25 respondents and identified 4 themes. (1) Individuals viewed fetal tissue donation as an opportunity to help others. (2) Respondents preferred for aborted fetal tissue to be used rather than discarded. (3) Respondents viewed the fetal tissue to be an extension of themselves, so informed consent is critical. (4) Information found online promotes mistrust of fetal tissue handling.

CONCLUSIONS

Individuals who have had an abortion are open to fetal tissue donation for research purposes. Pre-abortion counseling could be improved by clarifying the process of fetal tissue handling and, when available, discussing options for fetal tissue donation.

IMPLICATIONS: Informed pregnant individuals who have had an abortion appear to be supportive of fetal tissue research and their views can differ from the concerns of ethicists, politicians, and scientists. The perspective of the individuals donating fetal tissue should be included in future discussions of fetal tissue research.