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Four pillars of medical ethics (four principle approach) is a traditional framework for ethical decision‐making in healthcare settings. This framework provides a common analytic structure and a universal language for ethical discussions.¹⁵ Each of the four pillars can be applied to human fetal and embryological collections and remains.
Source publication
The management of human fetal and embryological collections presents an ethical challenge that can be explored from different perspectives, particularly when considering informed consent. The “micro ethics” level focuses on parties engaged in giving and receiving human tissue while the “macro ethics” level focusses on the collective responsibility...
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Citations
... 1,3 The loose parameters permitted under current legislation potentially place vulnerable parties, such as the next of kin, at risk of exploitation, and institutions at risk of negative reputation. 4,5 Furthermore, the lack of explicit institutional policies and guidelines may foster distrust between the community and the relevant institution, if placed under public scrutiny. It is imperative that there is a considered effort to address these issues through partnering with relevant stakeholders including those members that utilize the collections, such as academic staff, students, health professionals and technical staff, and members from the relevant communities. ...
... A cross-sectional questionnaire-based survey using a macromicro ethical lens investigated attitudes of those who use collections for an educational purpose and identified several areas for consideration. 5 It was found that a majority of participants held the view that informed consent was a fundamental aspect to establishing new collections. 5 The study also found that participants preferred that consent was sought from both the maternal and paternal genetic contributors to the embryo or fetus. ...
... 5 It was found that a majority of participants held the view that informed consent was a fundamental aspect to establishing new collections. 5 The study also found that participants preferred that consent was sought from both the maternal and paternal genetic contributors to the embryo or fetus. 5 ...
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.
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.
