Student Blog Post – Direct-to-consumer genetic testing: compromising donor anonymity

Direct-to-consumer genetic testing: compromising donor anonymity

By Caroline Estes

Direct-to-consumer genetic testing is becoming more and more prevalent. Most people get testing done to learn about their ancestry, health, or athletic performance among other things. These tests are getting more popular and expanding- you can even test your dog’s ancestry. However, while these tests only advertise their direct intentions, there are several unintentional consequences that can come from these tests. More than 3 million people around the world have ordered direct-to-consumer genetic testing to find ancestry information.

One indirect consequence of these genetic tests was discussed in an article published by Human Production earlier this year. The article highlighted that by using databases from ancestry tests people can identify anonymous sperm and egg donors. Even if the donor had not done any testing themselves, they can be traced by using information from first, second, or even third degree relatives that had done a form of genetic testing. The article states that true donor anonymity is now a thing of the past.

Since direct-to-consumer genetic testing is still increasing in popularity, it is likely that more anonymous donors will be identified using these databases. This could complicate how egg and sperm donor programs operate. Currently, many different fertility centers and donation centers in the United States and around the world allow the option for donors to remain anonymous. The article states that donors “should be informed that their anonymity is not guaranteed”. In countries where donors must now be identified, demographics have noticeably changed for sperm donors. Before identification, most donors were young students in need of extra money. Now, older men are more likely to donate.
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Another consequence is that adults who get testing may find out untold information about their parentage. Some adults through ancestry testing have discovered that they are donor-conceived. Their parents may have never told them about how they were conceived since the donation may have been anonymous. The article states that it is important for donation centers to educated patients that genetic testing can show that either one or both of them are not biological parents to their child. Most of these direct-to-consumer genetic testing companies require customers to be 18 years old. However, this can be bypassed if a parent or guardian authorizes the testing.

It will be interesting to see how these complications are addressed as direct-to-consumer testing reaches more of the public. These test kits are available at brick-and-mortar stores or can be conveniently ordered online. As more people get tested, these databases will expand and more indirect consequences of these tests may be revealed. These tests may change how egg and sperm donations operate. Should fertility centers still offer the ability to donate anonymously? Could there be even more indirect consequences from direct-to-consumer genetic tests? We will see.

Harper, J.C., Kennett, D., & Reisel, D. (2016). The end of donor anonymity: how genetic testing is likely to drive anonymous gamete donation out of business. Human Reproduction, 31(6), 1135-1140. Doi:10.1093/humrep/dew065