Donor Conceived People Searching -- One Central Registry

Donor Conceived People Searching -- One Central Registry
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Donor Sibling Registry "Copycat" Sites- Why Dilute the Search?

Over the past decade or so, there have been a few Donor Sibling Registry (DSR) "copycat" sites. (I've addressed these copycat sites in 2008 and 2013 DSR blogposts). These sites sometimes claim to offer the same capabilities that the DSR offers. They come and they go, and eventually, they all fizzle out. Recently, I have seen some new ones cropping up. Some have stolen DSR website content such as our facility list, and the most recent one has lifted our User Policy (and other verbiage from around the DSR website). We worked for years to build our facility list, which includes hundreds of facilities, and have spent many hours over the past dozen years fine tuning our User Policy. Stealing our copyrighted content is an indicator that these new groups, in addition to claiming to replicate our mission, and our Success Stories, just don't have the vision, or the ability to put in the necessary work to make a unique, innovative organization of their own.

These new "registries" simply dilute what has been a single focused searching capability. I've heard from many adopted people, that they wish they had a "DSR" type of database, one central place to search. In the same vein, people searching for genetic family at the commercial DNA sites have been frustrated, as there are 3 or 4 large DNA companies that don't share databases. The more donor "registries" the less likely people are to find one another.

Bill Cordray, for decades one of the most outspoken donor conceived people in the US, weighs in:

I think it is a bad idea to undermine the reputation of Wendy's work by setting up a competitive registry. Although it's a free Internet and you can do what you want, it will just weaken the value of DSR if several similar registries are set up and you'd have to go to all of them to do any cross-checking. As far as the fee goes, it is more than reasonable.

These new sites boast that they are free. Well, it's easy to be free while you have a few dozen members, or even a few hundred. We were also free for the first five years of operation (2000-2005), as I ran and built the site with my own money and a few small donations. When we hit more than 7,000 members, it became clear that I would need help from members to continue expanding our charity organization, as we received no outside funding, and have an extremely complicated set of databases. It was only then that we turned to our members for membership fee assistance to help us keep the DSR up, running and growing.

The DSR website is still completely free for browsing, and the $75/year or $175/permanent membership fees are only for people wanting to post their information or make contact. With almost 49,000 total members (donor conceived children and adults, parents, egg and sperm donors, and "others"), and almost 13,000 people matched- your odds are pretty good for matching on the DSR. If you were searching for first degree genetic relatives, your odds are much better at a website with 49,000 members than one with a few hundred.

This new "the more the merrier" fallacy is misleading, and ultimately will result in keeping donor relatives from finding each other with the speed and ease that many others have experienced before them. Creating more "registries" is only a disservice to donor families around the world. If the focus is taken off of the DSR, it makes it harder for people to know where to post themselves so that they have the best chances for being found. The copycat sites serve to dilute the search, as if you post on a copycat site, you may never know that your matches have been sitting on the DSR all along. After our national media story on CBS a few weeks ago, and a subsequent article in Teen Vogue, families were reporting to me that the newest copycat site was taking credit for matches already made on the DSR, (sperm banks have done this too), and speaking out publicly against me and DSR.

So....copycats, if you want to truly make a difference, don't replicate what's already been done and don't bad mouth our 15 years of successfully connecting, educating and supporting donor families, the public, and the reproductive medicine industry. Think for yourselves about new ways to encourage and affect a more ethical and responsible reproductive industry.

Misha Angrist, PhD, MFA. (Senior Fellow, Duke Initiative for Science & Society, Associate Professor of the Practice, Social Science Research Institute and Visiting Associate Professor of the Practice, Sanford School of Public Policy, who has invited the DSR into his Master class to help educate students, had this to say:

I am happy for there to be a single DSR--a nonprofit with unimpeachable motives. For years Wendy Kramer has worked tirelessly to help donor-conceived people find each other and their biological family members. She has spent much of her own money and now relies on membership fees to keep the DSR afloat. She has earned the respect of thousands of families by connecting and supporting them and by standing up to the sperm banks. I worry that copycat sites have the potential to undermine her efforts and lead donor families down the garden path.

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