According to a study published in the Journal of Medical Ethics, keeping within the high standards of consent, it should be considered ethically justifiable to contact an egg donor to facilitate the diagnosis of an unwell donor-conceived child.
Comparing the genome sequence of an unwell child with that of their biological parents (trio testing) can improve the likelihood of a diagnosis; however, with advances in fertility treatments, this process may include people not historically conceptualized as parents. The researchers sought to discuss the justification of contacting an egg donor to participate in genetic testing in order to aid in the diagnosis of a donor-conceived child.
The case involved a child born as a result of egg donation who presented with symptoms suggestive of a rare genetic condition. Although the child was eligible for trio genome sequencing, the fertility clinic declined to contact the egg donor because she had not consented to being contacted about future research or to be notified if it was found she had a previously unknown genetic disease or was a carrier for a “harmful inherited condition.”
The question that emerged from this scenario was whether it would be ethically acceptable for the fertility clinic to contact the egg donor, since the possibility of trio testing could substantially improve the chances of finding a genetic diagnosis for the unwell child.
The researchers’ rationale for thinking that contact would be justifiable in this situation was twofold. For one, the original consent conversation may not have presented the donor with the extent to which her decision was context driven, especially in light of new “research” technologies that can lead to immediate and tangible clinical benefit. There should be an opportunity for the donor to at least reconsider the choice of participating in genetic testing, especially when this technology was not a considered an option at the time of donation.
Second, testing would not only help to diagnose the donor-conceived child, but it could also offer a potential medical benefit to the donor. Although the case in question described a potential conflict between the rights of the egg donor and the donor-conceived child, contact was necessary to facilitate appropriate medical care for the child. The donor may feel contact is an invasion of her privacy, but she may also wish to help for altruistic reasons, or she may find the information useful, particularly if she has gone on to have other children or donated other eggs.
The investigators recognize that high standards for consent are important in the area of egg donation, but they argue that an updated approach to consent is needed in the era of progressing technology. An ongoing dialogue and clarification should be considered in matters of medical decision making, especially when balancing the risks and benefits to patients.
Horton R, Bell B, Fenwick A, Lucassen AM. Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child? [published online June 12, 2019]. J Med Ethics. doi:10.1136/medethics-2018-105322