Artigo em revista científica Q1
Dual consent? Donors' and recipients' views about involvement in decision-making on the use of embryos created by gamete donation in research
Inês Baía (Baía, I.); Claudia de Freitas (De Freitas, C.); Ana Catarina Samorinha (Samorinha, C.); V. Provoost (Provoost, V.); Susana Manuela Ribeiro Dias da Silva (Silva, S.);
Título Revista
BMC Medical Ethics
Ano
2019
Língua
Inglês
País
Reino Unido
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Abstract/Resumo
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.
Agradecimentos/Acknowledgements
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Palavras-chave
Gamete donation,Embryo research,Consent forms,Stakeholder participation,Ethics,Research
  • Medicina Clínica - Ciências Médicas
  • Ciências da Saúde - Ciências Médicas
  • Outras Ciências Sociais - Ciências Sociais
  • Filosofia, Ética e Religião - Humanidades
Registos de financiamentos
Referência de financiamento Entidade Financiadora
UID/SOC/03126/2013 Fundação para a Ciência e a Tecnologia
IF/01674/2015 Fundação para a Ciência e a Tecnologia
POCI-01-0145-FEDER-006862 Fundação para a Ciência e a Tecnologia
PTDC/IVC-ESCT/6294/2014 Fundação para a Ciência e a Tecnologia
02/SAICT/2017 Fundação para a Ciência e a Tecnologia
UID/DTP/04750/2013 Fundação para a Ciência e a Tecnologia
SFRH/BD/111686/2015 Fundação para a Ciência e a Tecnologia
POCI-01-0145-FEDER-032194 Fundação para a Ciência e a Tecnologia
POCI-01-0145-FEDER-016762 Fundação para a Ciência e a Tecnologia