GENETIC SUPERHEROES WALK among us but they—maybe you?—don’t know it. Results from a study called the Resilience Project, released today, show 13 “resilient” people—out of over half a million genomes studied—who have genetic mutations that should have doomed them to serious, often deadly, childhood disease. But instead, they’ve apparently lived healthy lives into adulthood.
Wow, you are saying, so how do we get these people into a lab and study their DNA and find cures and get everyone to live happily ever after? Yeah, about that: The scientists have not been able to contact those people—not to tell them about their special genetic status nor to do any follow-up research. Research consent forms drawn up long before the Resilience Project even existed put the kibosh on the idea—yet another example of the tricky issue of consent for genetic studies.