The following is an editorial summary.
There’s a lot of information in your personal genome, and you might not want all of it. There are diseases, disorders, and dangers hidden in there. Not to mention that DNA is arguably the most accurate way to determine relationships among people — in some unfortunate circumstances, it’s more accurate than what you’ve been told by parents or other family members.
Enter the accidental paternity test. Daniel Engber at Slate starts with this specific, and unsettling, example: “First Jackie learned her brother Alex was her uncle. Then things got a little weird.” From there he explores the case of two siblings-that-weren’t who discovered the true nature of their relationship via a commercial personal genomics evaluation.
He uses this as a launching point to dive into the myriad privacy issues that surround personal genomics. What if you get a paternity test you never asked for (as is the case in Engber’s example)? What if the data that’s being gathered can be used to identify you? An excerpt:
It used to be that people chose to learn about themselves or not, and doctors helped determine which bits of information were appropriate for each of us to know. Now we’re heading for a place where secrets flow more freely, where wise consumers must play defense with the facts.
To read some counter-arguments in favor of a no-holds-barred approach to personal genomics, check out these features from Slate and PopSci. One argues that people are more intelligent and resilient than we give them credit for, and thus this rather paternal fear that people can’t handle the knowledge in their own genomes is unwarranted. The other urges a whole-hog approach to open-source genomics because the potential scientific and medical benefit of huge genetic databases far outweighs the “pipe dream” of privacy.
Read the full story here: Who’s Your Daddy? The perils of personal genomics
- “Privacy protections: The genome hacker,” Nature