Legislation opens can of worms for gamete donors

VICTORIAN legislation allowing donor offspring to have the identifying details of their previously anonymous biological parent is an imperfect solution to a “genuine ethical dilemma” and needs “rigorous monitoring and review”, according to experts.

Xavier Symons, a research associate at the Institute for Ethics and Society at the University of Notre Dame Australia in Sydney, told MJA InSight in an exclusive podcast that the Assisted Reproductive Treatment Amendment Act 2016 (Vic) had caused a community backlash since it came into effect on 1 March 2017.

“The legislation allows donor children to know the name, date of birth, ethnicity, physical characteristics, genetic conditions and donor code of their donor parents, even if anonymity had been previously requested,” said Mr Symons.

The legislation, which applies to donors who donated anonymously prior to 1 January 1998, after which anonymous donation was banned, is an Australian first and allows donor children to access information through a new “one-door-in” service to be provided by the Victorian Assisted Reproductive Treatment Authority (VARTA).

Mr Symons, who has written an Ethics and Law article, published in the MJA, told MJA InSight that the legislation was “novel” and was trying to address a moral dilemma to which there was likely to be “no right answer”.

“We’re either going to betray the trust of donors or adversely affect the identity formation of donor children,” he said.

“The ethical seriousness of the impact on donor children actually outweighs the [impact on donors]. You could make a prima facie ethical justification for the enactment of retrospective legislation.”

Mr Symons said that the legislation was an attempt to address the adverse effects on donor children in terms of identity formation, a situation he called “genealogical bewilderment”.

“Donor children can experience the idea of a fractured identity. [They have] a desire to know their biological heritage at the level of meaning.

“What donor children articulate in their personal narratives is a social and existential view of the passage of genetic materials. It’s something far deeper than a purely physiological phenomenon.

“From this perspective, a part of the child’s identity is missing if they don’t have access to information about their donor parents. Genealogical bewilderment is the idea that the children in their identity formation are somehow adversely affected or frustrated by the mystery surrounding their biological origins.”

Mr Symons acknowledged that there were very strong feelings within the donor community.

“The initial lack of regulation of anonymity has unwittingly allowed for a serious injustice,” he said.

“That’s something we can’t ignore.

“The question is whether the authorities can retrospectively invalidate the sorts of contracts that were made between the health system and donors [who wished to be anonymous].”

“If someone prioritises consent over most other considerations, then I think [they would] see this differently, but part of the motivation for the Victorian government for the legislation was that [they believed that] the rights of children, in this case, are of paramount importance … I don’t think that’s an irrelevant consideration.”

Mr Symons said that it was vital that the legislation was subject to “very rigorous monitoring and reviewing of the actual implementation”.

“It could go horribly wrong,” he said.

“Donor children could just totally ignore the fact that the government has stipulated that they cannot contact the donor parent if the donor has expressed [that they] do not wish to be contacted.

“If the donor child just turns up at the house of the donor parent, that could be a catastrophic situation for donor parents.

“But if there are robust monitoring procedures and appropriate counselling services established for donor children, then I think this legislation is potentially a good model for other states.

“VARTA needs to have appropriate guidelines in place so to ensure that any negative experiences of donor–child contact are relayed to the government and integrated into further amendments to the legislation.”

Professor Malcolm Parker, Emeritus Professor of Medical Ethics at the University of Queensland, told MJA InSight that one aspect of the legislation deserved more attention.

“Any retrospective legislation is certainly a real betrayal of trust, and can only be justified by … another perceived serious injustice,” Professor Parker said.

“Of course, as in this case, some will say it can never be justified. In a general sense, this would be on the basis that the law as it existed in the past was the law, and while few laws enjoy universal support, they are all depended on at the time.

“The particular law was accepted by the community, since it is the community that enacts law through its parliaments, and was of its time, with a significant aspect, in this case, being the desire to encourage gamete donation.

“Although the children born of gamete donation have critical problems … they would not exist without the contribution of gamete donors, who were assured of their anonymity and were prepared to donate within the protective context of that assurance.”

“Retrospective legislation can be viewed in the same way as confidentiality. In both cases, there are exceptions to a general rule – that legislation ought not to be overruled at a later time, and that confidentiality ought not to be breached.

“The cost of broadening the exceptions is that the community’s faith and trust in the institutions of law and professional codes will be eroded.”

Mr Symons agreed, saying that aspect of the Victorian legislation made him “nervous”.

“The decision to change the law actually undermines trust in the health system, potentially among members of the community,” he said.

“Informed consent is predicated on the idea that that consent is enduring and will be respected. It’s a basic tenet of medical ethics.

“It’s one of the key issues that needs to be addressed better in future debates because I don’t think it was managed particularly well when the legislation was being debated in Parliament. It was papered over.”

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