Over the past few years, there has been a huge uptake for genetic and DNA testing. There are companies such as 23andMe, Ancestry DNA and Family Tree DNA offering genetic profiling services.
It is estimated that there are 26 million genetic profiles on the 23andMe database alone. So, what could possibly go wrong? Well, potentially quite a lot!
Let’s focus on one key area relating to fertility treatment, the issue of preserving anonymity and the role of consent.
In 2016 news broke of a 22-year-old woman who lost her father to the neurodegenerative disease, ALS. That same year, she then found out that he wasn’t her biological father. Her real father was, in fact, an anonymous sperm donor. The young woman set out to find him. She tried to contact him officially but was repeatedly obstructed by patient privacy. She then sent her saliva to various consumer genetics companies, including 23andMe and AncestryDNA.
She was quickly connected to one of her biological father’s cousins. And then she was directly connected to her father, who had chosen to reveal his name on the AncestryDNA site. From there it was a simple matter of reaching out to him and other relatives on Facebook.
It is estimated that between 30,000 to 60,000 children are conceived each year via a sperm or egg donor
Ken Chahine, Executive Vice President at AncestryDNA said, “As the database grows, the probability that a user will find a close genetic relative increases. But it wasn’t designed for that purpose.”
This new phenomenon is now forcing sperm and egg banks to admit that anonymity is NOT guaranteed. With this in mind some clinics are adopting open ID systems. Donors are told that offspring might connect with them in the future if both parties agree.
In fact, agreements between the parties that are brokered by the clinic may be irrelevant. Neither party nor the clinics can control what the OFFSPRING will do in future!
Such cases are already making the courts
There is one lawsuit currently in progress, where a woman signed up for family genetic testing. Her daughter was conceived via an anonymous sperm donor. The genetic testing company connected her to the mother of her daughter’s biological father.
In the excitement of it all, she sent a message to the woman asking if she would be open to contact. This resulted in a curt response. Two weeks later, the clinic who treated her sent a cease-and-desist letter with the threat of a $20,000 fine. Her contract stated that she makes no effort to search for or contact the donor. It also revoked her access to five additional vials of the same donor’s sperm. This was unfortunate because had hopes of further treatment and a sibling.
The clinic had to react to breaching its terms and conditions. The woman is now suing the clinic for withholding the donor sperm.
Recruiting of sperm donors has many obstacles
- Cryobanks only accept about 1% of sperm after screening. Donors are screened for genetic diseases, education and some physical attributes such as height
- Anonymity is important. In a 2016 study 29% of potential sperm donors said they would refuse donating if their names were put on a registry.
This suggests that prohibiting anonymous sperm donations would lead to a decline in the number of donors. Also, those who were willing to be identified will probably demand greater compensation.
So, essentially the cost for donor sperm will increase. Indeed, some sperm banks already offer different prices for anonymous sperm and open ID sperm. It is difficult to find donors who are open to contact, and this is reflected in the price.
This generation are tech-savvy, and as they get older, they’re likely to find other ways of identifying previously anonymous donors.
Perhaps the days of truly anonymous donation are now over?
There’s also a suggestion that anonymous donation can be more harmful than helpful to both recipient families and the donors. There is some evidence that the psychological consequences of children not knowing their biological origins can be scarring. It could be said that donor anonymity just perpetuates the past stigma of infertility and rightfully belongs in the past.