Parental Acceptance of Fetal Tissue Donation

Abstract

ImportanceHuman fetal tissue is essential for biomedical research, providing unparalleled insights into human development and disease.ObjectiveTo assess changes in parental decisions to donate fetal tissue following termination of pregnancy after the introduction of the Dutch Fetal Biobank (DFB) and to identify factors associated with consent to donate.Design, Setting, and ParticipantsThis cohort study collected data from all individuals assigned female at birth (hereafter referred to as participants) who underwent a termination of pregnancy at the Amsterdam University Medical Center from January 1, 2008, to December 31, 2022. No exclusion criteria were applied.ExposureIntroduction of the DFB on September 1, 2017, which offers the option to donate fetal tissue after pregnancy termination.Main Outcome and MeasureRates of fetal tissue donation before and after DFB introduction and associations between patient characteristics (maternal age, race and ethnicity, socioeconomic status, gestational age, and reason for termination) and consent to donation were assessed using multivariable binary logistic regression modeling.ResultsOf a total of 1272 participants (mean [SD] age, 33.0 [5.4] years), 576 (45.3%) were nulliparous. The mean (SD) gestational age at termination was 18 weeks 3 days (26 days), and reasons for termination were primarily because of structural defects (567 participants [44.6%]), with only a small portion (58 participants [4.6%]) terminating for social reasons (eg, unwanted or unplanned pregnancy). Fetal tissue donations increased from 1.2% (8 donations among 663 terminations) before the DFB introduction to 21.7% (132 donations among 609 terminations) after its introduction. This rise was primarily due to a shift from collective cremation to donation, while individual cremation or burial rates remained stable. The consent rate was 30.3% (132 of 436) for participants informed about the donation option. No significant demographic differences were found between participants who consented and those who did not, except for gestational age; consent rates decreased with advanced gestational age (odds ratio per week, 0.88; 95% CI, 0.83-0.94). Higher consent rates were observed for terminations due to social reasons (odds ratio, 3.56; 95% CI, 1.40-9.10).Conclusions and RelevanceThese findings suggest that a substantial proportion of individuals may be willing to donate fetal tissue for biomedical research after pregnancy termination. Integrating donation options in posttermination counseling respects patient autonomy and could ethically increase tissue availability for research. Expanding biobanks and fostering international collaboration is crucial for standardizing practices and ensuring equitable research benefits.