Gamete donor medical records: whose information is it?

This year, the Law Reform Committee of the Parliament of Victoria released recommendations from an inquiry into various aspects of donor conception, including the ability of donor-conceived people to access identifying and medical information about their donors.1 The Committee recommended that donor-conceived people gain retrospective access to such information, similar to the model already used in adoption. National Health and Medical Research Council guidelines2 and Victorian legislation (Infertility Treatment Act 1995 [Vic], s. 79) stipulate that donor-conceived people have this right, but only prospectively from when the law was implemented. Substantive concerns have been raised about how these proposed changes may negatively affect medical practice and donors. Here, I focus on the issue of retrospective release of donors’ medical information.

Privacy in Australia has never been absolute,3 and there are mechanisms in place that can overturn the right to privacy in appropriate circumstances, such as when a relative’s health or life is threatened by a lack of information about his or her genetic background (Privacy Act 1988 [Cwlth], s. 95AA). With an increasing number of illnesses shown to have a genetic component, access to a donor’s medical and family history is often required for clinical diagnosis and management.4 Additionally, as people at high risk of illnesses such as type 2 diabetes and cardiovascular disease need to make lifestyle choices to decrease their risk, the lack of access to this information is disconcerting. Should the Privacy Act provisions be adjusted to allow greater disclosure of this information? It may be possible to argue for this on the grounds of giving donor-conceived people full autonomy over their health, while also benefiting society through a reduced health care burden.

Granting access to health information retrospectively could be viewed as an erosion of doctor–patient confidentiality. If any change is legislation-driven, as would be the case here, it is through no fault of the doctor, who has not breached trust or confidentiality. On the other hand, it is a serious concern that the donor may become emotionally distressed and distrustful of the medical profession.

Donors were typically guaranteed anonymity and entered into the arrangement in good faith, making the overturning of such agreements troubling. Donor and recipient agreements submitted to the Law Reform Committee inquiry do not proscribe the withholding of medical information. They only stipulate that the identities of the donor and the recipients will never be known to each other. As such, the release of a donor’s anonymised medical information to his or her offspring would not be a breach of the alleged contract or agreement they entered into. Note that this does not automatically provide grounds for access to medical information, which is protected under existing privacy legislation — only that the agreement would not be broken.

A potential concern for doctors is the possibility that donors may make financial compensation claims against them for breach of contract or other legal obligations.5 However, any possibility of legal claims resulting from breaches can be negated through legislation,3 thereby alleviating this fear.

The retrospective release of information would be of greatest benefit to those conceived before the 1988 legislation change in Victoria that allowed offspring conceived subsequently to have access to donors’ non-identifying medical information (Infertility [Medical Procedures] Act 1984 [Vic], s. 23; enacted in 1988). However, the amount of medical information obtained at the time of donation was far less in the early years than today. Additionally, the majority of donors were young men who would be less likely to have had significant illnesses at that stage, but may have developed medical problems later, thus rendering any information collected at donation incomplete and outdated. Unless a system for obtaining updated medical information from donors was introduced (which, it is acknowledged, would be problematic), any medical information that could be released retrospectively may be of little practical use.

Retrospective access to information in Victoria, if legislated, may allow donor-conceived people to discover important information about their health. Introducing retrospective legislation requires careful balancing of the interests of the donors and donor-conceived people; but can compromises be made? If medical information is de-identified before release, it is difficult to see how this harms the donor. However, it is also possible that such moves will provide little benefit unless attempts are made to obtain current medical information. Perhaps it is more of a moral and legal acknowledgement that such information is important to donor-conceived people and that they have medical needs like everyone else.