By some accounts, 26 million people have undergone direct-to-consumer (DTC) genetic or ancestry tests. While some of the results of these tests seem might seem obvious (I turned out to be half-Hungarian and half-Ashkenazi, to no one’s surprise), there have been a number of accounts in the media of test results that have been considerably more dramatic.
Some of the more shocking — and now shockingly common — scenarios are the ones in which a consumer finds out through a DTC test that they were donor-conceived, and that one or both of the parents who raised them are not their genetic relatives. Gamete donors, who often provide genetic material (eggs or sperm) with the promise of anonymity, are finding themselves the recipients of messages from genetic children they never intended to meet.
Gamete donors could argue that they have a right to privacy. But Prof. Seema Mohapatra suggests the idea of gamete donor privacy is no longer realistic, due to the state of genetic technology.
I sat down with Prof. Mohapatra to learn more about the many ethical and legal questions DTC genetic testing raises for donors, recipients, and clinics.
Alex Pearlman: Direct to consumer genetic testing is still in its infancy, but already we have seen many stories about individuals finding out that they were conceived through gamete donation, or that one or more of the parents who raised them are not their genetic parents. Can you lay out some of the ethical and legal issues that you have encountered at play in this scenario?
Seema Mohapatra: Yes, in the last few years, direct to consumer genetic testing has inadvertently led to people to finding out that they are donor-conceived, or learned the identity of a previously unknown gamete donor. The parties involved in a gamete transaction all have different interests with regard to not revealing the identity of the donor.
The gamete donor may wish to preserve their anonymity to avoid any future emotional, legal, financial entanglements with the children born as a result of their sale of gametes. The gamete recipients who seek out an anonymous donor may wish to avoid any interference from an outside party in their parenting relationship. And finally, the clinics and sperm banks often are able to profit from marketing gametes from anonymous donors.
Although these parties have these possible interests in anonymity, the reality is that anonymous sperm donation has been a misnomer for a long time. The end of anonymous gamete donation is one of the unintended consequences of the widespread use of DTC genetic testing, and the so-called “anonymity” is a facade. A genetic database covering only two percent of the population could match nearly anyone in that population, especially if they are of European-descent.
In the U.S., assisted reproduction is accessed overwhelmingly by those of European-descent. So, a legal regime that allows “anonymous” donation is misleading those parties involved with donor gametes. One of the key legal and ethical issues is whether clinics and gamete banks should still be recruiting donors with the promise of anonymity or charging buyers of gametes for “anonymous” gametes. DTC testing has really changed the landscape of this issue. Perhaps a donor and/or donor gamete recipient agree to certain conditions as a part of participating in this market, including sometimes not seeking out the donor or recipient. However, the donor-conceived child is not a party to this agreement and has not agreed to any of these conditions.
Additionally, due to the relational nature of DTC testing, even if the parties themselves never undergo DTC genetic testing, the donor can still be identified. Also, regardless of a clinic’s policies, it is very likely that donor- conceived children will be able to identify the person who supplied the egg or sperm that led to their existence. Other questions that need to be wrestled with are: What are the obligations of the parties to a sperm donor and/or sperm recipient agreement? If a sperm recipient agrees to not seek out the identity of the donor, does that mean there is a duty to refrain from allowing DTC testing of their donor-conceived child? Also, should children even be taking DTC genetic tests? There are existing ethical guidelines suggesting that genetic testing for children be limited to those that would clearly benefit health.
AP: Those anonymous individuals who donate gametes may believe they have a right to privacy, and the promise of privacy could even be a driving factor in many people’s decision to donate genetic material. What are clinics doing, if anything, to inform would-be donors about the possibility that they could not only be identified in the future, but that the probability is high that they will be contacted by future offspring based on matching in consumer-facing DNA data bases?
SM: Representatives of certain large sperm banks have stated are planning to stop taking non-anonymous donors only going forward due to the likelihood of identification by the donor. However, as of today, there is an “anonymous donor” option at every large gamete bank in the United States. So, at least in terms of internet advertising, clinics and banks seem to be still promising anonymity. The American Society of Reproductive Medicine has suggested that banks and clinics acknowledge the risk of identification due to DTC genetic testing, but so far, banks and clinics seem to be proceeding too slowly. Promising gamete anonymity is deceptive to gamete donors and gamete recipients.
AP: In your opinion, what kinds of regulation, if any, should govern clinics and donors to mitigate these issues?
SM: It is difficult to imagine that federal regulation would be address this in the United States.
In other countries, like the United Kingdom and Australia, gamete anonymity has been addressed at the national level via regulation. In the US, the assisted reproductive technology (“ART”) industry has long resisted regulation and has instead self-policed via norms and policies set forth by the ASRM and Society of American Reproductive Technology (“SART”). One reason for the resistance to federal and state legal regulation in this realm is the fear that the federal government or states will attempt to limit who is able to become a parent via ART.
Thus, although sperm samples are subject to rigorous testing requirements by the Food and Drug Administration, it is unlikely that the federal government will (or should) step in to address gamete anonymity. A 2017 Citizen Petition by the Sibling Donor Registry to the FDA to request a mandate against anonymous donation was rejected. It is possible that state law will address the issue of anonymity and possibly tie it to licensure. I think that is most likely that private governance, via ARSM and SART guidance, will be most effective in acknowledging the reality that gamete donation is no longer anonymous.
AP: What does the future look like for gamete donation in a world where privacy cannot be guaranteed?
SM: The practical ramifications of this reality will likely be the potential lack of donors and reduced privacy for donor-conceived families. However, there are ways to help ensure a supply of donors in the market, like more payment for gametes. In my chapter [for the upcoming conference volume from the Petrie-Flom Center’s conferece], I suggest methods to address this going forward. I am also writing a law review article about another related unstudied area, which are the legal remedies for donors and recipients whose promised anonymity was breached.
But the bottom line is that today, the donor and recipient of donor gametes need to have a realistic view. Even in cases where the donor wishes to remain anonymous, it is no longer possible due to the advent of consumer genetic technologies. There are many policy and bioethical reasons about why retaining “anonymity” of gamete donors may be beneficial, but that these points are essentially moot. It is no longer even an option in the United States.
This post is part of a digital symposium hosted by Bill of Health in conjunction with the Petrie-Flom Center’s 2019 Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies.”
Seema Mohapatra is an Associate Professor of Law at Indiana University Robert H. McKinney School of Law.