I Just Took a DNA Test—Turns Out, I'm 100% Breaching My Donor Anonymity Contract: Direct-to-Consumer DNA Testing and Parental Medical-Decision-Making

Abstract

I Just Took a DNA Test—Turns Out, I'm 100% Breaching My Donor Anonymity Contract:Direct-to-Consumer DNA Testing and Parental Medical-Decision-Making Morgan Catherine York (bio) Introduction The holiday season of 2018 was frightful for Danielle Teuscher. Like some parents, Danielle decided to genetically test her five-year-old daughter, Zoe.1 Unlike some parents, however, Danielle used a sperm donor to conceive Zoe.2 Danielle opted to test her donor-conceived daughter with 23andMe's health and ancestry kit3 to learn more about Zoe's heritage and health risks, but she faced serious legal repercussions from NW Cryobank, the sperm bank that provided the [End Page 293] sperm.4 Zoe's 23andMe results included a match to her paternal grandmother on 23andMe's database.5 Zoe's paternal grandmother was listed as "receptive to contact" on the site, so Danielle sent a short message through 23andMe's portal6 indicating Zoe's relatedness and an openness to connect. Despite the paternal grandmother's listing as open to contact, Danielle received a cease and desist letter from NW Cryobank due to her alleged breaches of contract.7 Further, NW Cryobank sought financial penalties amounting to $20,000.8 Tis the season? Specifically, Danielle's alleged breaches included (1) seeking the identity of the donor and (2) contacting the donor's mother.9 In addition to financial penalties, NW Cryobank stated it would deny her access to four vials of sperm (for which she paid) that she had hoped to use to conceive another child who would be a genetic match to Zoe.10 Further, [End Page 294] the company redesignated the status of Zoe's donor from "open ID" to "anonymous,"11 effectively denying Danielle access to medical information updates from both the donor and parents of other children conceived from that donor's sperm.12 Danielle is not the only NW Cryobank consumer impacted by this particular situation—since NW Cryobank sent the cease and desist letter, the company has disabled access to its donor sibling registry,13 an action that harms all NW Cryobank consumers and conceived children "by preventing them from being able to connect with relatives and make other important connections for the children's wellbeing [sic]."14 Though few may consider this to be a justified consequence for Danielle's alleged breach, it is important to note that the click-wrap agreement Danielle signed did not include a provision giving NW Cryobank the right to take away Danielle's purchased gametes; the agreement only permitted NW Cryobank to cease storing gametes and to destroy them if payment was not received.15 Further, the agreement included other provisions biased towards NW Cryobank, like one specifying that any attorneys' fees spent by NW Cryobank on any court action shall be paid by the customer, which is against Washington law.16 Another issue at the forefront of Danielle's legal issues with NW Cryobank is whether she—and other parents of donor-conceived children—had adequate informed consent before she signed this clickwrap agreement.17 [End Page 295] Now, with an increased interplay between direct-to-consumer DNA testing and advanced reproductive methods, the position in which Danielle finds herself is seemingly becoming more common. Following the cease and desist letter, parents of donor-conceived children have reason to fear—the investigation of one's donor-conceived child's genetic history may result in similar cease and desist letters, large financial penalties, denials of access to donor medical updates and community forums concerning related children, and denials of future access to gametes.18 In the era of widespread availability of direct-to-consumer DNA testing, some facilities in the industry of fertility medicine have acknowledged that the promise of anonymity may inevitably be shortlived.19 Cryos International, one of the largest sperm and egg banks in the world, has acknowledged that gamete donors can be identified through direct-to-consumer DNA testing.20 While Cryos International still offers sperm donors the option of being an "ID Release" or a "Non-ID Release" sperm donor, the company makes direct statements regarding the possibility of all donors being found with DNA analysis and genetic...