Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research

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

Estudo de dois museus de ciências brasileiros problematizados a partir da perspectiva CTS e paradigma da complexidade

No Brasil os Museus de Ciências surgem com uma forte relação com a escola. Com efeito, tanto a organização de materiais para as suas exposições, como a atuação educacional junto à comunidade de professores, assumem um caráter didático pedagógico voltado para os estudantes da educação básica, que representam o grande público visitante dessas instituições. Consequentemente, a organização das exposições apresentam experiências clássicas de ciências, muito semelhantes às encontradas em livros didáticos e as utilizadas em salas de aula. Propomos problematizar, a partir da perspectiva CTS e do Paradigma da Complexidade, as características presentes nos aparelhos, artefatos e exposições de dois Museus de Ciências procurando evidenciar até que ponto esses espaços têm contribuído para a compreensão da população da ciência como cultura

Contents about gamete donation on IVF clinics websites: how to assure that the information provided meets people’s needs?

The websites of in-vitro fertilization (IVF) clinics have become privileged vehicles for search and provision of information by gamete donors and recipients seeking for fertility treatments with donated eggs and sperm, as well as relevant sources of psychosocial support for patients. The importance of ensuring quality of health information made available online to the public is consensually recognized, and there are different instruments to assess the formal quality of health-related websites. However, such instruments are only based on quantitative approaches and do not evaluate the accuracy of the information on specific topics.info:eu-repo/semantics/publishedVersio