There is no such thing as anonymity: loss of donor sperm anonymity in the era of direct to consumer (DTC) genetic testing

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Authors:

Mary Samplaski, M.D.a, Sigal Klipstein, M.D.b

a  Institute of Urology, University of Southern California
InVia Fertility Specialists and University of Chicago Pritzker School of Medicine

Consider This:

Sperm donation has allowed countless individuals and couples to achieve their reproductive goals. Historically, men who donated sperm did so with the expectation that donations would remain anonymous, and would not obligate them to future parental or fiduciary responsibilities (1). Sperm banks carefully select and screen males who are financially compensated for their donation. This was traditionally done with the understanding that donors would not find out whether the sperm was selected or resulted in offspring. Sperm banks essentially guaranteed anonymity to their donors. In most cases, the sperm donations were indeed anonymous.

The rise of direct to consumer direct-to-consumer (DTC) DNA tests has changed this anonymity landscape. These tests allow people to connect with previously unknown genetically related relatives, including some who had never intended on being found. This identification can happen from either offspring, donors, or family members. There have been a growing number of cases in which a male who donated sperm prior to the availability of DTC testing was later identified as a child’s genetic parent (1-6).

The use of DTC DNA tests is increasing. In 2016, approximately 3 million people had taken a DTC DNA test (7). In 2019, the four major companies (AncestryÒ, 23andMeÒ, MyHeritageÒ, FamilyTreeDNAÒ) had a total of over 30 million people in their registries, a number that is expected to grow to 100 million by 2021 (8).

Most of these companies offer several levels of information. For instance, AncestryÒ’s, baseline testing reveals to consumers “the proportion of their DNA that comes from different genetic populations”. The “DNA Matches” upgrade allows consumers to “find and connect with genetic relatives and see DNA segments shared among them” (9). In addition, some DTC DNA tests offer health incentives, including “Carrier Status” and “Health Predisposition” reports (10). The information available to consumers extends far beyond family tree building, potentially drawing additional consumers. In the era of personalized medicine, consumers may wish to understand their genetic predispositions and nuances and alter their medical and lifestyle choices based on these results. However, the ability of such testing to also trace genetic connectedness has led to situations in which anonymity was unveiled.  

One of the most publicized cases of donor anonymity being lost after a DTC DNA test involved a mother who sent her daughter, Zoe’s, genetic sample to 23andMeÒ. Zoe had been conceived using anonymous donor sperm insemination. 23andMeÒ unknowingly connected Zoe to her genetic paternal grandmother. Upon discovering this revelation, the sperm bank that she had used sent Zoe’s mother  a cease and desist letter threatening a $20,000 penalty, and revoking her access to the 4 remaining vials of sperm that she had previously purchased (1). A number of such cases have recently gained publicity, including several in which people were found to have 100 or more half siblings (2). In addition, there is at least one ongoing lawsuit from a sperm donor whose anonymity was lost,  leading him to discover that his sperm was used to create a higher number of offspring than he had intended (3). The repercussions of the loss of donor anonymity from DTC DNA tests continue to evolve.

These cases raise the question of whether knowing one’s genetic origins a “right.” Do individuals born using donor gametes have a right to pursue donor contact? The interests of the offspring may differ from those of the donor, who may wish to remain anonymous. Also, in question is whether the rearing parents have a say, given that such disclosures may profoundly impact their family unit. These are complex topics, which should take into account the rights and desires of multiple stakeholders. A detailed discussion of these considerations can be found within the American Society for Reproductive Medicine Ethics Committee document entitled “Interests, obligations and rights in gamete and embryo donation” (11).

These situations have spurred the creation of a variety of online support and “connection” groups, including “We are Donor Conceived” and the “Donor Sibling Registry”. These groups aim to help consumers locate their biological parent(s), and connect with others in their situation. In an online PDF document, Wendy Kramer, head of “Donor Sibling Registry” writes that “If only 2% of the population makes their DNA profiles publicly available, nearly all of them can be identified” (4). Her son Ryan was a donor conceived child and was the first in the world to find his biological father through DTC DNA testing. In the 20 years that followed,  the “Donor Sibling Registry” has connected over 17,000 people with their genetic half siblings and gamete donors (4). Similarly, in an online survey conducted by the Facebook group “We Are Donor  Conceived”, 57% of respondents reported that they had identified their donor using DTC DNA testing, and 72% had identified donor half siblings this way (5). These disclosures of genetic connectedness are not limited to donor conceived children. In a 2017 survey of adoptees searching for their biological parents using DTC DNA tests, 66.5% reported finding a match with a second cousin or closer (6).

But how does this change in anonymity landscape affect donors, donor-conceived offspring and their families?

Most men donating sperm do so as young adults, and those donating to cryobanks have historically been assured that their anonymity would be maintained. While limited data exists, some sperm donors have expressed that their reasons for doing so include for altruistic reasons, to pass on their genes, because of a positive impact on their self-esteem, for financial reimbursement, to help family members, to help friends, or to help anonymous persons (12). Neither the donors, sperm banks or recipients could have predicted future technologies that would unmask their identity via genetic testing. For those whose identity is revealed using DTC DNA technologies, this may come as a shock Most men do not know if or when their sperm was used, or if it resulted in a live birth. Learning that they have a genetic child that they were not aware of may bring up feelings of fear, a sense of obligation, or curiosity (author opinion). It may also affect their current families, as they may be forced to disclose to their current spouse/partner and/or children that they have genetically related children that resulted from a sperm donation they made with the promise of anonymity many years prior.

If and when to disclose to a child that they are the product of donor gamete is a decision that optimally should be made by the child’s rearing parents. There may be fear surrounding the decision to do this, related to how the children (or adults) will respond, or bring up the insecurities surrounding their prior infertility. While some believe that it is the child’s right to know their genetic origin (for both medical and psychological reasons), others believe that this is a private family matter that should be left for the individual parents to decide (13).

While limited, available data has shown generally positive outcomes in families who disclose to their children that they were donor gamete conceived. Research on children’s understanding of inheritance shows that they can understand the concept of inherited physical characteristics by age four, and genetic inheritance and family by age seven. Understanding degrees of biological relatedness is seen around age 14 years (14). Similar data is seen with adopted children. While children as young as 3 years can label themselves as “adopted”, it is not until around age 7 that they have an understanding of the meaning of adoption (15). Approaches to adoption emphasize the importance of openness for positive family relationships, particularly during adolescence when young people begin to incorporate their adopted background into their sense of identity (16). Adoptive family data shows that the earlier children are informed about their adoption, the better the outcomes in terms of psychological adjustment and parental relationships (14).

While data specific to donor conceived children are limited, one prospective study looked at family relationships in 87 families created through reproductive donation as a function of whether and when parental disclosure occurred. Within disclosing families, more positive family relationships and higher levels of well-being were found for adolescents who were told of their biological origins before age 7 (17). This data might suggest that the older an individual, the more difficult it is to assimilate the information that they were donor conceived. This has particular resonance for adults who find out that they are donor conceived from the results of a DTC DNA test (author opinion). 

There is scant data looking at the perspective individuals who find out that they are donor conceived as adults.  It appears, however,  that most donor conceived people are interested in securing information about their genetic heritage - more information than most have been able to obtain by standard means (18). One study of 16 adult donor offspring with the aim of directing counseling found that participants consistently reported mistrust within the family, negative distinctiveness, lack of genetic continuity, and frustration in being thwarted in the search for their biological fathers and a need to talk to someone who would understand (19). These data show that donor conceived adults are often interested in obtaining information about their genetic background, and lack of access to this information may negatively impact family relationships.

One online survey studied sperm-donors’ experiences upon meeting their donor conceived offspring. On average, 18 years had elapsed since the respondents donated sperm. In the interim, most had become curious about any offspring that may have resulted from their sperm donation. Most made contact through a bank or online registry. Most donors who made contact with the offspring had exchanged photos, and two thirds had met in person. Almost half now considered their donor-conceived offspring to be like family. Although contact was generally positive, some donors reported that establishing boundaries and defining the relationship was very difficult (20). In light of this and other data (14, 16), there appears to be a growing awareness of the benefits of informing children born of donor gametes of their reproductive origins as early as is developmentally appropriate. If we assume that a growing number of donor conceived children will find out about their origins eventually, the intended parents should be counseled that early disclosure is likely beneficial. According to the American Society for Reproductive Medicine Ethics Committee, “Maintaining anonymity of parties cannot be guaranteed since commercially available genetic testing and agencies that allow dissemination of identifying information through social media increases the risk of inadvertent disclosure of participants” (11). This statement iterates that fertility programs should make it clear to donors that they cannot guarantee immunity from future contact by recipients or offspring.

There are very little data surveying sperm donors’ thoughts on their possible loss of anonymity. A survey of Danish donors at a sperm bank in 1992, 2002, and 2012 found that with time a higher proportion of the donors would allow disclosure of nonidentifying information to recipients (age, occupation, height, etc.) (21). However, there were no differences over time in the reactions to an abolishment of anonymity. The proportion of anonymous donors who would stop their donations if anonymity were abolished was 51%, 56%, and 67% in 1992, 2002, and 2012, respectively. This number was unchanged even after the exclusion of the non-anonymous donors in 2012. More donors in 2012 wanted to know the number of children their sperm had sired, and agreed to loss of anonymity to the offspring if anonymity was abolished. In contrast, there were no statistical differences in the proportion of anonymous donors who would accept that the children contact them (22%, 15%, and 18% in 1992, 2002, and 2012, respectively). These data suggest that there are some sperm donors who will accept loss of anonymity, and some for whom this is an unacceptable event.  One study of US sperm donors found that 29% of current anonymous sperm donors would refuse to donate if the law changed such that they were required to put their names in a registry available to donor-conceived children at age 18 years (22). There is a small amount of data looking at the loss of anonymity in egg donors. One group looked at UK egg donors, where donor egg conceived offspring have the right to know their biologic parent identity at 18 years of age. When 504 former egg donors were surveyed, 36.4% would not have participated had donor anonymity been waived, but 69.1% would donate anonymously again (23). We will likely have more data on this in the coming years as the reality of loss of donor anonymity becomes more commonplace. 

The financial repercussions of loss of donor anonymity depend largely on whether contractual agreements were executed prior to attempts to achieve a pregnancy with sperm donation. As a precondition of sperm donation at commercial sperm banks, donors waive their legal right to parent resulting children and are likewise protected from financial responsibility for them. When sperm is procured via less formal means, contracts are not always considered. In the absence of a contract, sperm donors could seek parental rights to the offspring, and recipients may seek to compel sperm donors to financially support resulting children.  While contracts are protective to an extent, this may not always be the case. One illustrative case occurred in Kansas, whereby a lesbian couple used donor sperm for self-performed home insemination (24). The sperm donor was found on Craigslist, and did sign an agreement releasing him from all parental rights and responsibilities. However, when the lesbian couple separated, the biological mother sought financial assistance from the state. The state required the mother to disclose the name of the biological father in order to receive public assistance, and upon this information being revealed the Kansas Department of Children and Families filed a claim against the man for child support. Since a physician did not perform the insemination, the man was found to be responsible for the child. While different states may have different laws, this case raises important questions regarding the responsibility of donors to financially support the resultant children, particularly when the intent was for complete anonymity. These cases also highlight the importance of using cryobanks for sperm acquisition and physicians to facilitate these procedures,. Legal advice should be sought out when sperm is not acquired from a cryobank and/or when physicians are not involved in the process.

The issue of consanguinity may also come up as the ramifications of DTC DNA testing expand. The ASRM has advised an arbitrary limit of no more than 25 pregnancies per sperm donor in a population of 800,000 to minimize the risk of consanguinity (25). There are currently no publications reporting the identification of consanguineous persons via the use of DTC DNA testing. The risk of this would likely be higher in couples using donor insemination outside of a cryobank system, which might be lacking in the monitoring of the frequency and location of sperm usage.

While sperm donation was traditionally considered anonymous, t DTC DNA testing has resulted in a growing number of situations in which loss of anonymity has occurred. These situations have raised unanticipated ethical and psychological questions for sperm donors, banks, offspring, and their families (26).  Persons involved in these situations should decide whether they will disclose their use of donor sperm to their children. As most US sperm banks no longer guarantee anonymity, providers should discuss this with patients who are considering using donor sperm for ART.  This continues to be an evolving topic, with growing repercussions. Given the ongoing popularity of DTC DNA testing, such disclosures will likely become more common, forcing all parties involved to reckon with the consequences that this technology has unleashed.

References: 

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