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!):
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
- 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."
Advice on DNA Testing
What is advertised as a "half-sibling test" is not very reliable. It is typically based upon a very small set of DNA markers and the probabilities of the possible values of these markers in different populations. False negatives and false positives are both quite possible. This sort of testing works very well for paternity testing (where the child must one same value as the father at each marker position), but not very well here.
It's far better to have each person submit their samples to either Familytreedna.com, Ancestry.com or 23andme.com. These companies use so much data that it's certain that two half-siblings who in theory should have 25% identical DNA will in fact be found to have roughly 25% identical DNA. Each person will be sending in their samples separately - so they won't be doing a "half-sibling test", instead, they will be just entered into the database along with every one else. And if the two people are in fact half-siblings (or parent-child), they will see each other in their list of matches.
Families locate their sperm donors via DNA testing
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.