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Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research.
BMC Medical Ethics ( IF 3.0 ) Pub Date : 2019-12-02 , DOI: 10.1186/s12910-019-0430-6
I Baía 1, 2 , C de Freitas 1, 2, 3 , C Samorinha 1, 2 , V Provoost 4 , S Silva 1, 2
Affiliation  

BACKGROUND 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. 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. METHODS From 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. RESULTS The 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). CONCLUSIONS Divergent 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.

中文翻译:

双重同意?捐赠者和接受者关于参与由配子捐赠产生的胚胎在研究中的决策方面的观点。

背景技术关于在将配子捐赠者(EGD)所产生的胚胎用于研究目的的决策中,授予配子捐赠者的作用的合理分歧强调了考虑实施参与性,适应性和可信赖的政策和同意程序指南的重要性。但是,配子捐赠者和接受者关于EGDs研究决策的观点仍在研究中,这妨碍了以证据为基础的政策和指南的制定。本研究旨在探讨捐赠者和接受者关于谁应参与在研究中使用EGD的同意程序的观点。方法从2017年7月到2018年6月,72名配子捐助者和175名接受者在葡萄牙配子公共银行完成了一份自我报告的结构化问卷(答复率为76%)。达成双重同意的协议被定义为一种信念,即在研究中使用EGD应该得到捐赠者和接受者的同意。结果大多数参与者(捐赠者的74.6%和接受者的65.7%)愿意捐赠胚胎用于研究。几乎一半的捐助者(48.6%)和一半的接受者(46.9%)认为需要双重同意程序。在就业者中,这一观点更为普遍(49.7%),而在失业者中这一现象更为普遍(21.4%)。捐赠者不太可能相信只有接受者才应同意在研究中使用EGD(25.0%比41%)。在接受者中占7%),并且更经常接受独家捐赠者同意的想法(占26.4%,而在接受者中为11.4%)。结论在捐赠者和接受者之间对双重同意的分歧意见表明,有必要制定循证和合乎道德的可持续政策和准则,以保护两个利益相关者群体的福祉,自主权和生殖权利。需要更多的经验研究和进一步的理论规范分析,以指导以人为本的政策和指南,以共同决策制定有关使用EGD进行研究的信息。两个利益相关者群体的自治权和生殖权利。需要更多的经验研究和进一步的理论规范分析,以指导以人为本的政策和指南,以共同决策制定有关使用EGD进行研究的信息。两个利益相关者群体的自治权和生殖权利。需要更多的经验研究和进一步的理论规范分析,以指导以人为本的政策和指南,以共同决策制定有关使用EGD进行研究的信息。
更新日期:2020-04-22
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