Drawing on the views of donors and recipients about anonymity in a country that is experiencing a transition towards non-anonymous gamete donation mandated by the Constitutional Court, we explore how the intersection between rights-based approaches and an empirical framework enhances recommendations for ethical policy and healthcare. Between July 2017 and April 2018, 69 donors and 147 recipients, recruited at the Portuguese Public Bank of Gametes, participated in this cross-sectional study. Position towards anonymity was assessed through an open-ended question in a self-report questionnaire, which was subject to content analysis. Preference for an anonymous donation regime was mentioned by 82.6% of donors and 89.8% of recipients; and all those with children. Instead of the rights-based reasoning used by the Constitutional Court, donors highlighted concerns over future relationships and recipients focused on socioethical values linked with the safeguard of safety, privacy and confidentiality. The remaining participants advocated the choice between anonymity or non-anonymity (double-track policy), invoking respect for their autonomy. The complex, diverse ethical views and reasoning of donors and recipients expand a traditionally dichotomous discussion. Their perspectives challenge the transition towards non-anonymity and international guidelines, raising awareness to the need for their involvement in the design of policies to enable choice according to their values and preferences, and of psychosocial counselling responsive to their socioethical concerns and sensitive to their parental status. Empirical frameworks complement rights-based approaches to uphold justice, fairness and equal respect, and to incorporate utility, beneficence and non-maleficence in policymaking and healthcare in the transition towards non-anonymity.
- reproductive medicine
- patient perspective
Data availability statement
Data are available upon request
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Contributors SS designed the study. SPS collaborated in data collection. SPS, CdF and SS analysed and interpreted data. SPS drafted the manuscript, CdF and SS critically reviewed it and approved its final version.
Funding This study was supported by national funding from the FCT - Foundation for Science and Technology (Portuguese Ministry of Science, Technology and Higher Education), the Operational Programmes Competitiveness and Internationalization (COMPETE 2020) and Human Capital (POPH), Portugal 2020, and the European Union, through the European Regional Development Fund and the European Social Fund, under the project ENGAgED – Bionetworking and citizenship in gamete donation (POCI-01-0145-FEDER-016762; Ref.FCT PTDC/IVC-ESCT/6294/2014), the Unidade de Investigação em Epidemiologia - Instituto de Saúde Pública da Universidade do Porto (EPIUnit) (UIDB/04750/2020), the PhD grant SFRH/BD/122603/2016 (SPS), the contract Ref. DL57/2016/CP1336/CT0001 (CdF) and the FCT Investigator contract IF/01674/2015 (SS).
Disclaimer The funders had no involvement in the study design collection, analysis and interpretation of the data; writing process and decision to submit the paper for publication.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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