Abstract
BackgroundReasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients about who should take part in consent processes for the use of EGDs in research.MethodsFrom July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes (response rate: 76%). Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients.ResultsThe majority of participants (74.6% of donors and 65.7% of recipients) were willing to donate embryos for research. Almost half of the donors (48.6%) and half of the recipients (46.9%) considered that a dual consent procedure is desirable. This view was more frequent among employed recipients (49.7%) than among non-employed (21.4%). Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research (25.0% vs. 41.7% among recipients) and were more frequently favourable to the idea of exclusive donors’ consent (26.4% vs. 11.4% among recipients).ConclusionsDivergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research.
Highlights
Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures
The American Society for Reproductive Medicine and the Canadian Institutes of Health Research Guidelines are in favour of a dual consent, advising that donors should have a say in decision-making about the use of embryos for research purposes when these embryos were created with their gametes [4, 5]
These heterogeneous informed consent practices on EGDs disposition are based on different meanings and interpretations attributed to traditional ethical principles and biorights [6] related to autonomy [7, 8] and ownership [7, 9]
Summary
Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation (EGDs) for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. The American Society for Reproductive Medicine and the Canadian Institutes of Health Research Guidelines are in favour of a dual consent, advising that donors should have a say in decision-making about the use of embryos for research purposes when these embryos were created with their gametes [4, 5] These heterogeneous informed consent practices on EGDs disposition are based on different meanings and interpretations attributed to traditional ethical principles and biorights [6] related to autonomy [7, 8] and ownership [7, 9]. Critical approaches that plead for consent only given by recipients encompass concerns about the protection of donors’ autonomy and with a breach of altruism, which is the primary value underlying donation [1, 14]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
