The Donor Sibling Registry vs. DNA Testing: The Wow vs. The WTF??? (With Wendy Kramer)

Wendy Kramer, advocate, pioneer and co-founder of the Donor Sibling Registry (DSR), knew it was just a matter of time before DNA testing eradicated donor anonymity and long hushed family secrets.  Fact is, she’s been screaming about it for years—pointing out all the warning signs, like “Danger Ahead!”—but have we been listening?

 

It all started in 2004. Back then, 14-year-old Ryan Kramer (Wendy’s donor-conceived son), swabbed his cheek, slipped it into a vial and mailed it off to one of the first online DNA-testing companies—Family Tree DNA.  At the time, this donor-conceived young man hoped that by testing his DNA he would find answers to long sought after questions like, “Who am I?” and “Where did I come from?” He was hoping to find out more about his unknown paternal origins.

 

But what he learned turned out to be a helluva lot more than that.

 

This was in the early days of at home DNA testing—long before Ancestry DNA, with its 6-million-member-strong database and other DNA genealogy companies came along. It was such a new science that all Ryan hoped for were results like “part of you stems from Ireland.”

 

So Wendy and Ryan Kramer were as surprised as the rest of the world when in 2005 he became the first donor conceived person to locate his formerly anonymous sperm donor father through DNA testing.

 

Fast forward to 2018, and I can tell you from personal experience that finding an anonymous sperm donor can be as easy as 23andMe… that is, DNA.

 

So how are sperm banks still promising their donors complete anonymity?  It’s called lying.  But make no mistake, the banks are getting nervous and desperate—as is evident in the contracts they make donors and recipients sign—contracts that sound pretty threatening, though whether or not they’re actually legally binding or enforceable is highly suspect.

 

It doesn’t seem many were listening when Wendy Kramer predicted that DNA would put an end to anonymity and family secrets. But they should have.  Over the past three weeks alone, between Facebook’s DNA Detectives For The Donor-Conceived and the DSR Group, I’ve seen posts from five new members who learned they were donor-conceived thanks to at-home DNA testing.  Crazy.  I mean seriously, can you imagine? Aunt Doris buys you a DNA kit for Christmas and by the time Valentine’s Day rolls around your entire world is turned upside down… and all because you spit in a cup and that spit generated a report that revealed: “Daddy’s not your dad—THIS guy is.”  It’s heartbreaking, really.  All five of these new members (of groups I’m sure they never dreamed or longed to be a part of) are in their thirties.  Imagine finding out such news in your thirties.

 

There are too many ramifications and issues related to such a discovery to cover in a single blog. So for today, I want to focus on one issue: What’s the difference between connecting with donor-related relatives through the DSR vs. a DNA website such as AncestryDNA?  And does how you go about it matter?

 

For this, I turned to the expert herself, Wendy Kramer, and this is what she had to say:

 

       Wendy:

 

Ryan and I started the Donor Sibling Registry (DSR) in 2000, via Yahoo Groups, the earliest social media-type application. Our group (incorporated as a 501©3  in 2003) was based on the idea that Ryan’s donor had signed up for anonymity,  and that he respected that fact. But, he was curious to know if his donor might  have had a change of heart about being known. Also, he wondered if he had any half siblings out there. The concept of mutual consent contact was very  important to us both, as we didn’t want to “out” anyone, we only wanted to create a platform where mutually desired contact could take place. Ryan had  been thinking about half siblings and his donor in this way, “what if they want to know me, and I want to know them, how will we ever have the opportunity to find each other?”

 

Fast forward to 2004: When a DNA testing company contacted us, asking if Ryan would like to test his DNA to possibly find out more about his ancestry and his paternal countries of origin, we jumped at the opportunity. We both felt that any information that a DNA test could provide about Ryan’s ancestry would be welcomed. Neither of us, nor the DNA company ever entertained the idea that Ryan’s biological father might be found using this new genetic testing technology.

 

At first, the DNA test did provide some interesting information about where Ryan’s paternal ancestors hailed from. He thought that was cool, and we both thought that was the end of it. Nine months later though we were shocked to receive notification that Ryan had matched with two very distant relatives. It was with the last name of these two connections, a public records search, and Google, that in a very short period of time lead us to Ryan’s biological father. The irony didn’t escape us—here were the two founders of a mutual consent contact organization for connecting donor-conceived people with their first or second-degree genetic relatives, and now we had, almost by accident, tracked down my son’s biological father—a guy who had not signed up for any type of contact. Ryan had become the first donor-conceived person to locate this donor via DNA testing. He might have been the first, but definitely not the last, as he opened a door that never could be closed again.

 

Since then, we’ve been sending DSR members to DNA testing both to confirm/deny relatedness and to search for their biological parents. This is particularly common for those without the luxury of a donor number, many of whom are born between the 1940’s and 1980’s. More recently, adult donor- conceived people, many of whom had no idea of this fact until they swabbed their own cheeks, are coming the other way, from DNA testing sites to the DSR to make their connections after finding out that they were donor-conceived. Many who were unaware (including several half siblings of Ryan’s) are doing DNA testing for a variety of reasons: family tree curiosity, it was a gift, it’s new trend, someone they know asked them to test in order to rule something/someone out, a passion for genealogy, they suspect there’s a secret, looking for someone else in particular, etc. The level of shock, disbelief, surprise, curiosity, and confusion vary among these people who most often had no idea about their donor conception.

 

 It’s now very common for DNA testing to provide first and second-degree genetic relatives and these results are exposing long held family secrets. These secrets don’t just affect one person, but rather, can affect entire families, sometimes even multigenerational. Parents who thought they’d keep the secret of using a donor are now being confronted by children who wonder why their parents were not truthful with them.

 

While the result is often the same, establishing new friendships and familial relationships via DNA (with people who aren’t necessarily prepared for this type of new-relative connection) can be a very different experience than making deliberate mutual consent contact on the DSR. For the most part, people who connect via the DSR are delighted. On the other hand, connecting via DNA can be so shocking, that some are just not prepared to even reply to messages from their new-found relatives on the DNA websites.

  

 People add postings on the DSR for a variety of reasons and the level of desired contact certainly can vary. We have members longing to establish relationships with their or their child’s half siblings, offspring hoping to find their biological parents, and donors hoping to connect with their biological children. Some members only want to share and update medical information, and some land somewhere in between—uncertain as to what type of contact and relationships they’re looking to explore and/or establish.

 

While the level of desired contact might vary, by searching on the DSR you can be assured that any results you’re provided come with the certainty and confirmation that the person you’re connecting with will not be shocked by the news that they are donor conceived, and chances are, they’ll most likely be thrilled to have made the connection.

 

So what advice can I give?  First, think carefully before buying someone a DNA kit for Christmas. And for those seeking out family—you might try going on the DSR before rocking someone’s world and revealing (or shattering) some HUGE family secret by posting on a DNA site.

 

Just my two cents.

 

 

 

 

 

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