Citizenship and gamete donation: socioethical issues in policy, care and research

Abstract

This presentation seeks to explore the role of sociological imagination in the context of research about gamete donation that builds on a multi-vocal approach grounded on the involvement of donors, recipients and health professionals, when occurring changes in the regulatory framework towards openness in donor conception and extension of access to sperm donation to single and lesbian women. It will do so by unpacking unexpected ethical dilemmas and methodological challenges associated with conducting a mixed-methods project that aims to broaden the canvas of understandings from which policy and practices in the field takes its bearings. Fieldwork experiences lay the groundwork for discussing socioethical issues in: 1) policy, by exploring opinions about governance of healthcare (e.g. assessment of national information campaigns, views on rights of ownership to gametes and their implication on consent regarding disposition of embryos created by gamete donation); 2) care, by analyzing people-centredness in clinical practices (e.g. privacy and confidentiality in the design and organization of a health setting); and 3) research, by critically addressing the challenges arising in connection to daily research relationships (e.g. interviewing participants in spaces “loaded” with mixed emotions for both participants and researchers, categorising participants who do not necessarily identify themselves with categories defined a priori by researchers, planning the circumstances under which various stakeholders could be joined together in a single discussion group, while guaranteeing the confidentiality of their identities and the right to be forgotten).

Empirical evidence derives from: i) documentary analysis of the websites of in vitro fertilization clinics and the documents produced by the independent bodies responsible for addressing the socioethical implications of gamete donation in Portugal; ii) ethnographic observation in the waiting room of the Portuguese Public Bank of Gametes (total of 175 hours, May 2017-January 2018); iii) structured questionnaires with 70 donors and 171 recipients (July 2017-May 2018); iv) semi-structured interviews with gamete donors (n = 44) and recipients (n = 7 couples); and v) a World Café involving 23 higher university students in health sciences (November 2017).

Reflexivity around how ethically dilemmas and methodological challenges can be overcome should be promoted to develop people-centred policies and practices, to achieve ethically sound research and innovation, and to enrich the development of innovative study designs, anticipating future challenges that may arise in governance and research about sensitive and complex phenomena in the field of health. There is ample opportunity for enabling multi-stakeholder involvement in the enhancement of the debate and the promotion of research around socioethical issues in gamete donation in Portugal, namely regarding: double track as an alternative to anonymous or open donation; personal information to be shared with and between stakeholders; dual consent in the decision-making regarding the donation of embryos created by gamete donation for research; and the development of specific guidelines and periodic evaluations of in vitro fertilization clinics websites.

Acknowledgments

The author acknowledge funding from the FEDER through the Operational Programme Competitiveness and Internationalization and from the Foundation for Science and Technology – FCT (Portuguese Ministry of Science, Technology and Higher Education) (POCI-01-0145-FEDER-016762), under the project “Bionetworking and citizENship on GAmetE Donation (ENGAgED)” (Ref. FCT PTDC/IVC-ESCT/6294/2014) and the Unidade de Investigação em Epidemiologia - Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (POCI-01-0145-FEDER-006862; Ref. UID/DTP/04750/2013); and the FCT Investigator contract IF/01674/2015. Cláudia de Freitas, Catarina Samorinha, Liliana Abreu, Inês Baía, Sandra Pinto da Silva and Ana Moura are thanked for their discussions and contributions to this work.