THE BLOG
08/13/2015 04:55 pm ET Updated Aug 13, 2016

The Voting Booth of Sperm and Egg Donor Anonymity

voting booth

"Nobody asked me what I wanted," said one donor-conceived young woman in her 20s. "I just wish the (sperm and egg banks) would consider this from the child's point of view."

A spirited Donor Sibling Registry group discussion began after my recent Huffington Post blogs were published.

Parents of donor-conceived children were overwhelmingly on the side of donor kids having access to their ancestral, medical and genetic information, with one dissenter parent pointing out that she feared that the sperm supply would "dry up" if anonymous donations were banned.

This is a myth perpetuated by the reproductive medicine industry and the media. In fact, since 2005, when the UK banned anonymous donations, or rather gave a donor-conceived child the right to know donor information at age 18, the UK's HFEA website reports that their sperm and egg donor numbers have grown significantly. The reasons why could be in part because the stigma and fears of the unknown in past anonymous sperm donation have dissipated, because donor banks may have stepped up their donor outreach programs, and perhaps better education about donating has spurred a new type of mature donor who can respect the need to be known by any children he helps to create.

Let's just say that ending donor anonymity in the US did result in a decrease in donors. Does the end always justify the means? We currently do not have enough organ donors either, but do not resort to unethical measures to procure vital organs. So, as with sperm and egg donors, there might not be enough for everyone who would like a child. But that can't justify anonymous donation. We need to stop sacrificing the needs of donor-conceived people for the "reproductive rights" of parents, at any cost.

In the relevant discussion on donor anonymity, while the majority of donor-conceived parents in the discussion were in support of any and all information donor children wanted to seek out, one parent claimed that her 11 year old wanted nothing to do with knowing his genetic relatives or information.

Interestingly, one donor conceived adult then sheepishly admitted that she had always wanted to find her genetic relatives, but she had been afraid to tell her mother for fear of upsetting her. Several parents then echoed the same sentiments, and one said, "Children will often emulate behavior that they feel pleases the parent, while their true feelings can be buried under the basic need to be accepted."

After a heartfelt discussion, the group came to the conclusion that ALL children, especially donor conceived kids, absolutely have the right to know where they come from, no matter what the prior agreements have been with anonymous donors. Although disclosure, or "telling" may be the first step with donor children, it's just the beginning of the conversation. It then becomes important to both honor and support any curiosities that a child has to connect with their first-degree genetic relatives. It should be made very clear that the topic is open for discussion and any fears that a parent might have about connecting with unknown donor relatives should be placed on their back burner and/or dealt with through counseling.

Some parents stated that since that they made an agreement to use an anonymous donor, they felt ethically bound to stay away from trying to gain information, while several donor conceived children rebutted that these prior agreements were made only between the donor, the parents, and the sperm bank--not the child, who has never had a vote in the matter.

Co-author Jen Moore, whose 2 boys were told that they were donor conceived in 2014, added to the discussion, "I've been asked repeatedly: 'Will I ever meet my donor?' and 'Will I ever get a picture of my donor?' It's really sad for a parent to know that there is no way to answer YES in good conscience."

In a DSR research survey of 751 donor-conceived offspring, 83% of them who are not in contact with their donors, wish to be. In addition, more than three quarters of all surveyed offspring strongly recommend that parents use an "open" or "willing to be known" donor.

To make a case for open donors, the Donor Sibling Registry research reports [LINK] that over 94% of surveyed sperm donors were open to contact with the offspring they helped to create. Sadly, some cannot get their sperm banks to even tell them their own donor numbers or release their information to searching children, even when both sides are actually asking to be connected.

No matter how long the sperm banks desperately hang onto the idea of anonymous donation, donors won't be in hiding, by choice or otherwise. Yaniv Erlich, Ph.D., an assistant professor at Columbia University and a core member of the New York Genome Center, surmised, "The recent estimates are that 3 million people were tested with FamilyTreeDNA, AncestryDNA, and 23andMe for the full autosomal tests. The number is growing quickly, and 23andMe added half a million people in the last year. It's been reported by the entities that operate third party websites to analyze genomic information, that the companies are experienced a doubling in the number of participants each year."

While none of the major sites reporting issuing future projections on DNA testing, using Yaniv Erlich's information, combined with the correlated numbers reported relative to 23andme.com [LINK] (300,000 genotyped paying customers in late 2013, 650,000 in early 2014, and over 1,000,000 in May 2015), the estimated populations that could have their genotype in some system by 2020 could exceed 14 million or more.

To bring things into perspective, a first cousin genetic relationship on 23andme.com can be between a 7%-13% genetic match. It would be extremely difficult past this level of transparency, with names and emails being traded along with family histories, for any donor to remain anonymous.

Author and law professor Julie Shapiro also chimed in, responding with her own blog article entitled, "Facing the End of Anonymity." She writes, "It seems to me that questions about the value of anonymity, and the ways in which the law should/should not protect/promote it are being outflanked by reality." She goes on to firmly state that no one (sperm or egg banks) can truly promise anonymity anymore. "It's irresponsible, and perhaps even dishonest, to do so."

Still, sperm and egg banks, who have enjoyed free reign to give and take away information from donor children, seem to remain blind, deaf and dumb to what is in front of their faces related to the advances of psychology, sociology and genetic science. We have to wonder - when the American Society of Reproductive medicine will start inviting donor conceived people into the discussion for setting policies and recommendations for their industry? How can it be that the very people who are being created by these reproductive methodologies still have no voice in the matter?

Regardless of the dimming horizon on anonymity brought by the ready-packaged realities of DNA genealogy, there remains the plaintive plea of the long-ignored donor child who, for generations, has been kept in a wondering state--wandering between what they know, what they can find out by digging, and what about the their ancestral, medical and genetic history is being hidden from them. They are left to wonder why the rights of the sperm banks and clinics (to make money) and the parents (to have a child) and the donors (who at the time agreed to anonymity) always trumped the rights of donor-conceived people to know where they come from? It's high time to humanize the donor conceived and allow them their own space in the voting booth of donor anonymity, with the "polls" already showing a sweeping victory in favor of known donors.

Co-written with Jen Moore, Outreach Director, Donor Sibling Registry, and mother to two teen-aged donor-conceived sons. Cartoon Illustration also by Jen Moore

References

Donor Sibling Registry (DSR) (2015). 15th Year Information Booklet. Retrieved online July 17, 2015 at https://www.facebook.com/download/395409610650666/Law%20School% 20Powerpoint%20FINAL.pdf

2011 Human Reproduction: Offspring searching for their sperm donors: how family type shapes the process. Authors: Diane Beeson, Wendy Kramer, Patricia K. Jennings. doi:10.1093/humrep/der202

Julie Shapiro, Blog,
https://julieshapiro.wordpress.com/2015/08/09/facing-the-end-of-anonymity/

23andMe Blog, by Anne Wojcicki, http://blog.23andme.com/news/one-in-a-million/

1 Excerpts from an interview with Yaniv Erlich, PhD, Assistant Professor of Computer Science, Columbia University; Core Member, New York Genome Center New York, NY

2 How Many Paying Customers does 23andMe have? Alex Komenko, http://www.quora.com/How-many-paying-customers-does-23andMe-have

3Average Percent DNA Shared Between Relatives
https://customercare.23andme.com/hc/en-us/articles/202907170-Average-percent-DNA-shared-between-relatives