…wait until the medical research community finds out you’re one of the Thirteen:
There are 13 people in the world who might be able to provide life-saving treatments for some of the world’s most damaging diseases — but doctors can’t find them.
The 13, who have been named “genetic superheroes”, have remained healthy despite carrying the same genetic mutations that usually lead to childhood diseases. Each of them should have been susceptible to Mendelian disorders such as cystic fibrosis, which begin in early childhood as the result of a defect in a gene.
But those 13 people didn’t have the usually inevitable illnesses that would be associated with their genetic make-up. They are apparently completely unaffected by their problem genes.
Which makes them very valuable to doctors working on research projects.
The only problem now is that scientists have no idea who those people are. They were identified by scientists during a study of more than half a million people’s DNA — but the researchers only had access to their genes, not the people themselves.
Maybe that’s for the best. People who are happy to donate their DNA for research might not be so happy to be on the receiving end of constant contact and requests for more and more time for research projects.
The researchers got full consent to use the genes, but not to talk to the people involved.
“”There’s an important lesson here for genome scientists around the world: the value of any project becomes exponentially greater when informed consent policies allow other scientists to reach out to the original study participants,” said Stephen Friend, the other Resilience Project co-founder.
“”If we could contact these 13 people, we might be even closer to finding natural protections against disease. We anticipate launching a prospective study in the future that will include a more broadly useful consent policy.”
I’d advise anyone who takes part in any such study to read the small print carefully, if they don’t want to be harassed in future.
It’s increasingly the case that the medical profession view us as belonging to the state, so there’s no need to further encourage them in that belief.