Developing an ethical framework for informed consent using human fetal and embryological collections: An Australian...

The term "human fetal and embryological collections" refers to repositories or archives that house remains of human fetuses and embryos. Most of these remains have been obtained without informed consent from the next of kin, thus reflecting a time in history where this may have been acceptable. Previous quantitative studies seeking stakeholder perceptions toward 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 qualitatively explore and analyze the perceptions of key stakeholders regarding human fetal and embryological collections. Twenty-seven individuals signed up and completed the demographic survey. However, 25 attended the focus group interviews. 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. The mean age of participants was 29.1 years of age with a gender distribution of 40.7% (n = 11 out of 27) men and 50.3% (n = 16 out of 27) of women. Thematic analysis identified four themes: (1) consent; (2) 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, 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. The results of this study indicate that ethical issues surrounding human fetal and embryological collections need careful consideration based on macro, meso, and micro ethical frameworks.