Last month, GenPop spoke with genetic genealogist CeCe Moore about people’s concerns about their privacy with consumer DNA testing. The interview was part of our What the Future healthcare edition, based on an Ipsos Omnibus Survey. Moore is best known as the consultant for the PBS television series, “Finding Your Roots,” and for her work to reunite people of unknown parentage with their biological relatives. She recently joined forces with Parabon Nanolabs to consult with law enforcement investigating violent criminal cases. Here is more from that interview.
GenPop: We asked people about their likelihood to use a genealogy DNA testing service. I was surprised by some of the results. What were you surprised by?
Moore: I was most surprised that over a quarter of people said they were very unlikely to ever take one of these tests. Normally, when I’m having conversations about what I do, almost everybody is interested in taking one of these DNA tests and there may be one naysayer out of 20 people. I hate to break it to them. Whether they test or not, at least part of their genetic profile is being exposed by the other 36 percent who say they already tested. So, it is a bit of a moot point at that level.
GenPop: DNA testing widely available now. Why does it seem so hard to make disease diagnoses or avoid false positives of identities in some criminal cases?
Moore: In criminal cases, it’s because they’re only looking at 20 genetic markers out of billions. They’re using an old technology from the law enforcement DNA databases. The law has lagged technology and they are finally starting to catch up now with the idea of using these more comprehensive-type DNA tests that we use for genetic genealogy. So instead of looking at 20 markers you’re looking at about 700,000 markers.
That’s a much higher confidence of identification. So, you see why they have trouble reading it. Also, I think that’s beside the point. Identifying someone from their DNA is very different than interpreting what that DNA tells us. Now that is a much more difficult question to answer so that’s where researchers come in. That’s where you need people and funding to unravel what genetic code means.
GenPop: In the future, will people still be doing records genealogy or that they will be able to just build a tree based on DNA?
Moore: We’re seeing five to 10 percent of the population testing. That is a large enough amount to start filling in people’s family trees just based on their genetic profile. I think there will always be some people who have to or want to do the traditional research.
When we first started DNA testing there was this joke among genealogists who’d laugh that people think they’re going to spit in a tube and they’re going to have their family tree mailed back to them. Well, it is no longer a joke. It’s exactly what we do for people of unknown parentage and adoptees. We reverse-engineer their trees from their genetic profile. And so, there’s no reason to believe that can’t be automated in the future.
GenPop: Do you see a future where these genealogy databases help find a cure for diseases?
Moore: I think only now that medical researchers are starting to realize the power of combining pedigree information and genealogical family tree information with genetic information. We’ve been trying to get them to understand how much can be accomplished with that for years now.
I think Ancestry.com realized it faster than some of the others just because they’re already in the business of building family trees. They understand that there are death certificates that can be attached to those trees. There’s a lot of very valuable information that could be recorded in those trees that then combine the genetic information of that person from that family. It is just a gold mine for medical researchers.
This conversation was edited for length and clarity.
The Authors:
@KateMacArthur