Lahl: I’ve followed your story and founding of
DonorSiblingRegistry.com for some time now. When you founded the registry it was a direct response to your own son wanting to find his biological father and siblings – right? What have you been most surprised by in running donorsiblingregistry for some 8 years now?
Kramer: My son always knew that the chances of knowing his donor were slim, so when he found out that he did indeed have half brothers and sisters out there, he wanted to know them. His thinking was that even if he didn’t ever get to know his donor, that he could experience that “invisible” part of himself in these half siblings. The site was created as a place to be found. Respecting people’s privacy and their right to remain anonymous was important to my son, so he wanted a place where he (and others) could be found. We hear from sperm banks all the time that these donors were promised anonymity, and they should not be sought out. The most surprising thing to me is that donors started coming to our website and registering and many of them are very interested in connecting with offspring. We have more than 700 egg and sperm donors who are currently on the site, willing to make themselves available for contact. At the beginning, I never dreamed that donors would ever register on the DSR.
Lahl: What has disappointed you or frustrated you?
Kramer: The industry. There is a huge disconnect between the industry and the families that they are helping to create. They can not accept the importance of donor conceived people making connections with half siblings and/or donors. They have refused to adequately educate recipients and donors at the front door so that they can make truly educated choices about donating and accepting donated sperm. They have also been neglectful in regards to addressing donor families’ needs out the back door. They are responsive in regards to helping people get pregnant, but then do not offer support to donor conceived people wishing to gain more information on their genetic and ancestral history. They will not facilitate mutual consent contact. They do not adequately update medical records and share important medical information. They do not accurately monitor how many children are born from any given donor.
Lahl: You’ve obviously learned so much, both from your own personal infertility story and through your leadership in assisting families who come to your site. Tell me some things you’ve learned and want to pass on to our readers.
Kramer: Please, do not choose an anonymous donor. Why bring a child into the world who will have no chance to ever know their donor or anything about that “invisible” side of themselves? Not all donor conceived people are curious, but you don’t know if you will have one who is. Please, educate yourself on the clinic or sperm bank you are about to use. Find out if they are responsive to families’ needs post pregnancy. Please, be honest with your child and disclose the truth about their conception right from the start. And please, honor your child’s curiosity and right to search, find and connect with their biological family.
Lahl: What kinds of things give you hope? What encourages you and causes you to keep going?
Kramer: I know that the work that the DSR does is making a difference in people’s lives. Each time I hear a heart-warming story of connection between half siblings or a donor conceived person and their biological parent, it makes me know that what we are doing is worthwhile and valuable. Each family that I hear from that has decided to tell their child the truth, or choose a “known” as opposed to “anonymous” donor, or think seriously about donating eggs or sperm because of what they read on the DSR- it lets me know that as a community, we can influence decisions and lives.
Lahl: I have been very critical of infertility medicine as it is currently practiced in the U.S. Often referring to the current practice as the reproductive-medicine-gone-wild approach. Do you have some ideas and suggestions for regulation or legislation?
Kramer: The industry is unregulated and completely out of control. We have many families with 20, 40, 60 (even 100!) children listed for one donor on the DSR. No one is keeping track of how many kids are being born. No one is tracking, updating and sharing vital medical information. Thank goodness many of these families can share medical information with each other on our site. No one in the industry is properly educating parents-to-be or donors. No one is addressing the needs of the donor conceived. No one is tracking egg donors’ health histories. We have recently partnered with Cambridge University in England and are conducting the first full scale study of donor families, because the infertility has not done so. The industry would prefer to self regulate. Funny though, that until these stories started becoming public on a regular basis, the industry showed no incentive to make any changes. It certainly makes me wonder whose best interests they are looking to serve.
Although I am unsure of how the government would do at such a task. Maybe a group consisting of government representatives, industry representatives, therapists, bio-ethicists, donor conceived, donor parents, donors, and other interested parties. I believe we should look to other countries who have regulated and see what has worked and what can be improved upon within their systems.
I am very clear of the problems….but not so certain about the solutions.
Wendy and son Ryan are co-founders of DSR. Wendy is Executive Director. Ryan is an undergraduate student in Aerospace Engineering Sciences at the University of Colorado at Boulder.
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