Volunteers are needed to give researchers information about both their genotypes and their phenotypes when they are healthy and when they are sick, an editorial in Nature Genetics argues. And, it adds, there should be incentives to encourage participation as well as penalties for those who use such genetic and other linked data to discriminate against the volunteers.
The Nature Genetics editorial adds that such a group of "health donors" could be based anywhere in the world, but they note that many genome-wide association studies first examined European populations, that Europe may be the first port of call. Further, the European Union in its Horizon 2020 framework is to include support for understanding health and the prevention of disease using, among other approaches, genomics, Nature Genetics notes.
"Public health needs to be turned over to the public," the editorial argues. "Participation in genome-enabled research into the determinants of health is an important form of participation in society and a secure way to ensure the constant improvement of healthcare delivery."