March 2018 Blogpost: Connecting on the DSR vs. on DNA Websites
April 22, 2017: Half Siblings Headed to the March for Science!
June 2016: A letter from the Editor-in-Chief of Human Reproduction. (This is not a "2016" issue....it's what we have been saying since 2005!):
Due to genetic testing donor anonymity does no longer exist
Many thousands of people worldwide have been conceived with donor gametes but not all parents tell their children of their origin. Genetic testing will make this impossible. Over three million people have already used direct-to-consumer genetic testing. The rapidly increasing availability of cheaper and more detailed tests poses numerous challenges to the current practice of sperm and egg donation: 1. Whether they are donating in a country that practices anonymous donation or not, donors should be informed that their anonymity is no longer guaranteed, as they may be traced if their DNA, or that of a relative, is added to a database. 2. Donor-conceived adults who have not been informed of their status may find out that they are donor-conceived. 3. Parents using donor conception need to be fully informed that their children’s DNA will identify that they are not the biological parents and they should be encouraged to disclose the use of donor gametes to their children. All parties concerned must be aware that, in 2016, donor anonymity has ceased to exist. JLH (Hans) Evers, Editor-in-Chief Human Reproduction
Advice on DNA Testing
In addition to posting on the Donor Sibling Registry, people can also submit their DNA samples to either Familytreedna.com, Ancestry.com or 23andme.com. Half siblings will have roughly 25% identical DNA, donor conceived people and their biological parent will share around 50% of their DNA. If two people are in fact half siblings (or parent-child), they will see each other in their list of matches. After you get your DNA results, upload your raw data to gedmatch.com (free). That makes you findable by people who tested in Ancestry, 23andme or Family Tree DNA. Read the articles below about how others have found donors and half siblings via DNA testing. Sometimes, conecting with close or even distant relatives can lead you to your half siblings and/or your donor.
Articles and Advice About Connecting Via DNA testing
A sample letter: What to say to your new DNA half sibling match when this news might be a shock to them? Here is some sample verbiage for reaching out to a new half sibling that you have matched with via DNA testing (who might not know that they were donor-conceived, or that their mom or dad was a donor):
Hi, it looks like we’re half siblings! It looks like we are both children from a man who donated his sperm during the 1980’s. I’ve known that I was donor conceived since I was 12 years old, and I’ve always been curious about my donor and my potential half-siblings.
In 2008 I joined the Donor Sibling Registry website (http://www.donorsiblingregistry.com) to make myself available for mutual consent contact. There are 8 other donor-conceived people on that website who are also your half siblings! They are a great bunch of people and we all welcome you into our group with open arms.
I realize that this might come as a surprise to you, and I also realize that this may be a sensitive or private subject within your family, so I want to assure you that I will be extremely respectful of your privacy regardless of how you may wish to connect. I also understand that you might need some time to process this new information.
If and when you’re ready, I’d be happy to discuss it all with with you!I In the meantime, I’d encourage you to check out the DSR website which is an excellent resource for reading research and personal stories about establishing these new family connections.
- 2018: The Philly Inquirer: When a DNA test unites family members, not everyone is happy about it
- 2016: Another mention in Genome Magazine's Summer issue:
- 2016: Sitting in my doctor's office last fall, I picked up a copy of Genome Magazine and thought is was really interesting, and related so much to what we do at the DSR. I contacted them, asking if they could write an article about the DSR and they said that they already had an article underway about search for family with DNA testing. They were interested in adding a segment on the DSR, and asked for a specific story. So I asked Jen if she would tell her story to the writer, and viola- we're mentioned in the Genome Magazine Winter edition. This magazine in in doctor's office across the country, and anyone can request a free subscription. I'd recommend it!
- 2015: DNA = Donors Not Anonymous, Huffington Post
- 2015: A Need to Know: DNA reveals a 30-year-old family secret
- 2014: A great how-to, step-by-step document by DSR member Stephen T. Nelson on DNA testing and searching for your genetic family
- Two really fun articles from Wait But Why on your ancestors:
- 2013: WNYC Radio: Ryan's biological father speaks publicly for the first time about being found through DNA testing. Lost, Then Found
- 2013: NATURE: Genetic privacy needs a more nuanced approach, by Misha Angrist:
Excerpt: "...an article in Science last month raised doubts about the privacy of volunteers who hand over their genetic data (M. Gymrek et al. Science 339, 321–324; 2013). “Oh my God, we really did this,” said Yaniv Erlich of the Massachusetts Institute of Technology in Cambridge to The New York Times, after his group managed to cross-reference information from public databases to put names to samples of DNA donated to research.
Yet what the scientists did is not shocking or all that new. The DNA re-identification bogeyman has lurked at the door for years. The warning signs were there in 2005 when a precocious 15-year-old boy called Ryan Kramer found his sperm-donor father. Just as Erlich and his colleagues would do years later, Kramer used a combination of Y-chromosome data — his own in this case — and genealogical searching of public records to track down a donor dad who had almost certainly been promised anonymity by the sperm bank."
Ryan with Dr. James Watson (discovered DNA/the Double Helix). We sat in his office and chatted about DNA (even about finding your formerly anonymous sperm donor through DNA!), science, politics, religion, and life. It was fascinating, and an amazing privilege.