Thread: What is the field of Biology doing to address the ethics of DNA collection?

Some of my relatives have had their DNA stolen for the purpose of "research." I am wondering what the community of legitimate genetics researchers (affiliated with universities, etc, not people trying to make a buck out of a sensational story) think about this and if anything is being done to address such issues?

To my knowledge, this is actually a bit of a legal grey area. The big issue with using tissue samples is always patient identification; if you know who the sample came from and can link the sample to the person, there are huge ethical and legal issues. But it's less clear whether there are issues if you have no idea who the sample came from, say if you're using random clippings from a barber shop floor. In that case it has been argued that the research can't really effect the lives of the hairs' former owners in any way, since no one knows who the hair belongs to.

There's still quite a bit of debate going on over this since large-scale population genetics is a very recent thing. If DNA is taken that is linked to a patient (say they're studying someone's genes as linked to the outcome of their treatment for a given disease), then legal and ethical protections for the patients are vital. Research projects can easily be shut down if they fail to maintain documents of patients' consent or if they fail to protect a patients' privacy. But it's less clear what you do in the case that you have random DNA samples and no one knows where they came form or can link them to a patient.

It is certainly completely illegal to collect someone's DNA from their person without their consent. Anyone running around taking DNA samples off of unwilling individuals is committing more ethical and legal violations than I can count. But in situations where the genetic material comes from something that's shed normally in the course of everyday life, like hair clippings or dead skin cells, I'm not really sure where that falls. After all, we all shed DNA all the time, and the threat of having someone analyze it without our consent is kind of a new thing.

If it's any comfort, someone who is going around stealing peoples' DNA for "research" probably does not have the ability to do much of it. It may be one of those scam things where they want to make people think they can get useful information from their genes in hopes that the people will then pay them for that information. Real scientists generally work through established medical facilities and universities. And any "home brew" or drug store DNA-testing kit out there is unreliable at best.