Jenny Reardon, sociology professor and author of The Postgenomic Condition: Ethics, Knowledge and Justice after the Genome, discusses the future of genomics and its social and ethical implications, including advances in gene editing and the effects of direct-to-consumer genetic testing kits.
On the implications of genetic testing: “We now have in this country, at least for now, a law that says that you cannot be discriminated [against] on the basis of your genetic information when it comes to access to healthcare. However, there were loopholes in this. Life insurance is not covered, disability is not covered and, importantly, long-term care is not covered. At the moment that becomes very important when we are talking about something like Alzheimer’s.... So the question is if you take a [genetic] test are you then obligated to provide, if you are applying for long-term care, that information to your long term care insurance provider?”
On the possibility of sequencing everyone’s genomes: “I think it’s technically possible that that would happen and financially it’s becoming possible. There are a couple of significant other parts of this that would have to happen in order for that to happen. One [of] the big obstacles right now is around should we do that? So that’s where the ethical issues come in… And part of the reason is, if we have this data, we become responsible for it.”