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

On 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, and to some extent responsible for the major constraints imposed on the identity formation of their offspring.13 From the perspective of reproductive ethics, it could be argued that in light of the disadvantage that donor parents imposed on their donor children, these individuals have forfeited their prima facie right to privacy. While not totally dismissing the rights of donors, one might argue that we should now attempt to give priority to the interests of the children, and, in particular, their desire to finally know their biological heritage.

The ethics of retrospective change

It is uncontroversial that we should not withhold information about donors from donor offspring. However, it is controversial to use this premise to justify the enactment of retrospective legislation which, in effect, declares what were once lawful contracts to now be unlawful. The reasons for change must defeat the strong legal presumption against enacting retrospective legislation.14

One could characterise the situation in question as a genuine ethical dilemma. It not only involves a conflict of ethical duties for the state but also a conflict in which neither ethical duty can be said to override the other. There is no “right answer”; if there is a change in the law, we betray the trust of donors by breaking the contract, and yet if there is no change, we deny the right of children to access basic information about their parents.

Rather than supposing that we face an irresolvable ethical dilemma, I tentatively argue that the ethical seriousness of the situation gives a prima facie ethical justification (a justification that is decisive unless overridden by other factors) for the enactment of retrospective legislation. The initial lack of regulation of donor anonymity, I believe, unwittingly allowed for a serious injustice — the deprivation of vital information for donor children.

The practice of anonymous donation has caused considerable suffering in the lives of many donor children.6,7 If we take identity to be a fundamental feature of human beings, then states have at least a prima facie ethical basis for enacting retrospective legislation. Despite the objections of donors, I believe that this outweighs considerations to the contrary, such that we are warranted in dissolving the contractual assurance of anonymity that was initially made to donors.

This is not an argument for allowing donors to attempt unsolicited contact with their donor parents, which would involve a fundamental violation of the privacy of donors and may itself constitute a serious injustice.14 I also note that there are complex legal questions that need to be addressed, and these questions require expert analysis. This article has only considered the underlying ethical issues.

Shortcomings of the Victorian model

It should be noted that there are certain limitations to the Victorian solution. 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. Authorities should consider the viability of these options.

Second, donor offspring may try to contact their parents despite the legal sanction involved. This would be increasingly likely if indeed it is the case that donors desire more than just information about their biological parents. VARTA and other organisations may need to strengthen counselling services based on the reactions of donor offspring to the initial disclosure of information. This will be necessary to avoid the social and psychological disruption, as well as the violations of privacy, that some donors fear.

Conclusion

The Victorian model attempts to balance the rights of donors with the rights of donor children. It allows donor children to access basic identifying information about their parents, while at the same time giving donors control over how, if at all, they wish to be contacted. This article has tentatively suggested that the model, while suffering from certain deficiencies, is nevertheless ethically defensible. It is true that some donor offspring may not want to know the identity of their biological parents;9,11,12,15 yet many others do. The latter will profit from the information provided by the registry.

The law will need to be closely monitored, and the release of donor information accompanied by support and counselling for donor children. VARTA guidelines should be appropriately amended in light of any initial negative experiences of disclosure and donor–child contact. It may be the case that more severe penalties will need to be introduced for attempts at unsolicited contact with parents by donor offspring. Monitoring is crucial for the benefit of both Victorian legislators as well as other states considering enacting similar legislation.