An ethical analysis of human fetal and embryological collections and informed consent: a focus group study

Abstract

Background Human fetal and embryological collections refer to repositories or archives that house remains of human fetuses and embryos at different stages of development. Previous studies have highlighted that most remains in these collections have been obtained without informed consent from the next of kin, thus reflecting a time in history where this may have been acceptable. Previous studies seeking stakeholder perceptions towards these collections suggest that there is misalignment with the values of society today, and the current guiding frameworks pertaining to these collections. The aim of this study was to explore and analyse the perceptions of key stakeholders regarding fetal collections with a particular focus on informed consent. Methods Through conducting focus group interviews of 25 participants, the study sought to provide an in-depth exploration of how stakeholders perceive the value of fetal and embryological collections, and the importance of informed consent. Results The mean age of participants was 29.1 years of age with a gender distribution of 40% men and 55.6% of women. Thematic analysis identified four themes: Consent; preparation for clinical practice; 3. equity and fairness; and 4 educational value, with several subthemes identified at macro, meso, and micro ethical levels. Macro subthemes included importance of informed consent, and equity and fairness, and genetic composition. Meso subthemes included respect and privacy, and legal and institutional considerations. Micro subthemes included emotional considerations, preparation for clinical practice, and educational value. Conclusions The study advocates for consideration of the ethical issues surround human fetal and embryological collections from the macro, meso, and micro ethical frameworks.