If someone opts into the research, I have no problem with thier DNA being used for that purpose. What I do have a problem with is the medical community’s belief that providing a biological sample for one purpose (for example, a biopsy) entitles them to use that sample in any way they see fit.
Henrietta Lacks comes to mind, here.
If I pay someone to I dunno, clean my house and I give them a key to enter, that doesn’t give them permission to rent out my kitchen or borrow my clothes. Similarly, if I pay a company to sequence my DNA because its the only way I’ll ever know where I come from (team adopted,) that should not give them permission to profit off my limited use sample unless they explicitly ask.
If they want to use the collected DNA for additional research, it isn’t unreasonable to expect them to ask first.
Informed consent laws were around well before The Immortal Life of Henrietta Lacks came out. I think there were earlier publicized examples of subject mistreatment (like Tuskegee) that already pushed the field to be better.
If someone opts into the research, I have no problem with thier DNA being used for that purpose. What I do have a problem with is the medical community’s belief that providing a biological sample for one purpose (for example, a biopsy) entitles them to use that sample in any way they see fit.
Henrietta Lacks comes to mind, here.
If I pay someone to I dunno, clean my house and I give them a key to enter, that doesn’t give them permission to rent out my kitchen or borrow my clothes. Similarly, if I pay a company to sequence my DNA because its the only way I’ll ever know where I come from (team adopted,) that should not give them permission to profit off my limited use sample unless they explicitly ask.
If they want to use the collected DNA for additional research, it isn’t unreasonable to expect them to ask first.
23andme requires you to agree to what they ask, which is far more than what Johns Hopkins did for Henrietta Lacks.
Arguably, the only reason they bother to ask is the negative attention the medical field got from Henrietta Lacks. And they’re still not great at it.
Informed consent laws were around well before The Immortal Life of Henrietta Lacks came out. I think there were earlier publicized examples of subject mistreatment (like Tuskegee) that already pushed the field to be better.