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

Abstract

STUDY QUESTIONHow do gamete donors who presumed they could remain anonymous respond to proposed legislation to retrospectively remove anonymity?SUMMARY ANSWERA little more than half of the donors opposed the recommendation to introduce legislation to remove donor anonymity with retrospective effect.WHAT IS KNOWN ALREADYAn 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, DURATIONThis 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, METHODSBefore 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 CHANCEDonors 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 CAUTIONThere is no way of knowing whether participants were representative of all pre-1998 donors.WIDER IMPLICATIONS OF THE FINDINGSThe 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 INTERESTSThe study was funded by the Victorian Department of Health. The authors have no conflicts of interest ...

A qualitative study exploring counselling for release of information to participants of a donor-assisted conception programme

“…Consistent with Australian research investigating the varying perspectives and experiences of donors, recipients and donor offspring (Rodino et al, 2011;Allan, 2012b;Hammarberg et al, 2014), information provided by expert counsellors in our study further supported the importance of an established specialist-based intermediary service dedicated to providing all stakeholders of a donor-assisted conception programme, information and support on sensitive matters of consent, release of information, contact ramifi cations and ongoing support.…”

Motivations and experiences of patients seeking cross-border reproductive care: the Australian and New Zealand context

“…Participants were cognizant of a child's rights to genetic heritage with a philosophy valuing transparency, honesty, and identity needs for the donor-conceived child and recognizing a child's right to disclosure about circumstances of conception and to biological knowledge. The results of this study are congruent with other studies showing that prospective recipient parents have donor information needs, including knowledge of biological lineage for their children (49)(50)(51) with an increasing proportion of recipient parents now wanting to disclose circumstances of conception (52). Whether donor information exchange needs can be reliably fulfilled through international CBRC donor conception programs, however, has not been put to the empirical test.…”

The right to know versus the right to privacy: donor anonymity and the Assisted Reproductive Treatment Amendment Act 2016 (Vic)

“…First, the compromise, while giving some attention to donor rights, does not go far enough to satisfy the majority of donors. A study conducted before the introduction of the new legislation indicated that the most donors were opposed to the change 10 . Many have suggested other options, such as voluntary disclosure of information by donors to a central registry.…”

“…6,7 While evidence suggests that donor-conceived children are as psychologically healthy as children conceived by natural means, 8 there is, nevertheless, an undeniable desire felt by many donor-conceived children to know their biological heritage. [9][10][11][12] Underlying this desire are the identity formation processes of the donor child, which in some way have been adversely affected or frustrated by the mystery surrounding their biological originsa phenomenon often described as genealogical bewilderment. 6 What donor children articulate in their personal narratives is a social and existential view of the passage of genetic materialsomething far more than a physiological phenomenon.…”

“…A study conducted before the introduction of the new legislation indicated that the most donors were opposed to the change. 10 Many have suggested other options, such as voluntary disclosure of information by donors to a central registry. Authorities should consider the viability of these options.…”