The right to know versus the right to privacy: donor anonymity and the Assisted Reproductive Treatment Amendment Act 2016 (Vic) Recent Victorian legislation is ethically defensible but will need to be closely monitored O n 1 March 2017, the Assisted Reproductive Treatment Amendment Act 2016 (Vic) came into effect, allowing for the retrospective release of anonymous donor information to donor-conceived children. 1 The legislation, an Australian first, allows donor children to know the name, date of birth, ethnicity, physical characteristics, genetic conditions and donor code of their donor parents, even where anonymity has been requested. Donor children can access information about their biological parents through a new “one-door- in” service to be provided by the Victorian Assisted Reproductive Treatment Authority (VARTA), which is now managing the state’s central donor registry and providing information and support to donor-conceived people, parents, donors and their relatives. The donors affected by the legislation are those who donated before 1 January 1998; anonymous donation ceased in Victoria after that date. Many commentators have welcomed the Victorian reforms and believe that they will help mend the fractured sense of identity that some donor children experience. 2 Yet critics point out that the legislation violates donors’ right to privacy. Some would suggest that this is of even greater importance than the desire of donor children to know their biological parents. As other legislatures review their donor anonymity legislation, it is useful to review the main ethical and sociological issues surrounding the Victorian model. The rights of donor children versus those of donor parents The Victorian legislation aims at a compromise between the right of donor-conceived children to know their biological parents and the right of donors to retain their anonymity. While recipients can access basic identifying information through the VARTA registry, donors can nevertheless decide the “contact preferences” according to which they wish to be contacted, if at all (section 23 of the Act). 1 The difficulty of the situation is that, despite the attempted compromise, the tension between the rights claims of donor children and donor parents to some extent remains. As it stands, the new legislation retrospectively takes away the anonymity of donors even though they donated their gametes on the express condition that they would remain anonymous. Critics argue that it is unjust and duplicitous to ignore the conditions of donor consent and make identifying information available to offspring and other related parties (the legislation also permits parents and descendants to access donor information). 3 Importantly, many of these individuals donated altruistically, and some feel manipulated and betrayed by health care authorities. 4 The release of information may also have a significant psychological and social impact on the lives of donors. Many donors have families of their own and some may have chosen not to disclose to their partner or children that they had donated gametes. Some donors fear that their partners and family members will react negatively to this discovery, seeing donation as a form of infidelity or betrayal. 5 Even with the contact preference provisions of the new law, donors may nevertheless experience psychological distress at the mere fact that their children know their identity. In light of these considerations, the Victorian legislation may appear problematical. Yet just as donor parents have a strong claim to privacy, there are equally powerful reasons to prioritise donor children’s right to know. Specifically, there are many donor children who experience a sense of fractured identity as a result of not knowing their biological parent(s). 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. 9-12 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 origins — a 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 material — something far more than a physiological phenomenon. From this perspective, a part of a child’s identity is missing if they do not have access to information about their donor parents. 7 Because many donor children experience a sense of identity deprivation at not knowing their biological parents, we have a morally significant reason to allow them access to donor records. It should be acknowledged that donor children did not choose the circumstances of their own conception. According to some ethicists, donor parents are responsible for the existence of their genetic children, Xavier Symons Institute for Ethics and Society, University of Notre Dame Australia, Sydney, NSW. xavier.symons@ nd.edu.au doi: 10.5694/mja17.00259 Podcast available at https://www.mja. com.au/podcasts Ethics and law MJA 207 (9) j 6 November 2017 377