Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response

STUDY QUESTION How do gamete donors who presumed they could remain anonymous respond to proposed legislation to retrospectively remove anonymity? SUMMARY ANSWER A little more than half of the donors opposed the recommendation to introduce legislation to remove donor anonymity with retrospective effect. WHAT IS KNOWN ALREADY An increasing proportion of parents disclose their origins to their donor-conceived children and growing numbers of donor-conceived adults are aware of how they were conceived. Research indicates that access to information about the donor is important to donor-conceived people. However, worldwide most donor-conceived people are unable to find any identifying information about the donor because of the practice of anonymous gamete donation. STUDY DESIGN, SIZE, DURATION This study adopted a qualitative research model using semi-structured interviews with gamete donors that included open questions. Interviews with 42 volunteers were conducted between December 2012 and February 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS Before 1998 gamete donors in Victoria, Australia, were able to remain anonymous. Pre-1998 donors were invited through an advertising campaign to be interviewed about their views on a recommendation that legislation mandating retrospective release of identifying information be introduced. MAIN RESULTS AND THE ROLE OF CHANCE Donors were almost evenly split between those who supported and those who rejected the recommendation to introduce legislation to remove donor anonymity with retrospective effect. About half of the donors who rejected the recommendation suggested the compromise of persuading donors voluntarily to release information (whether identifying or non-identifying) to donor-conceived people. These donors were themselves willing to supply information to their donor offspring. The findings of this study informed the Victorian Government's response to the proposed legislative change. While acknowledging donor-conceived people's right of access to information about their donors, the Government decided that identifying information should be released only with the consent of donors and that donors should be encouraged to allow themselves to be identifiable to their donor offspring. LIMITATIONS, REASONS FOR CAUTION There is no way of knowing whether participants were representative of all pre-1998 donors. WIDER IMPLICATIONS OF THE FINDINGS The balancing of donors' and donor-conceived people's rights requires utmost sensitivity. All over the world, increasing numbers of donor-conceived people are reaching adulthood; of those who are aware of their mode of conception, some are likely to have a strong wish to know the identity of their donors. Legislators and policy-makers in jurisdictions permitting anonymous gamete donations will need to respond when these desires are expressed, and may choose to be guided by the model of consultation described in this paper. STUDY FUNDING/COMPETING INTERESTS The study was funded by the Victorian Department of Health. The authors have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER Not applicable.