Benefiting from Science is a Human Right!

Patterson

I was just at the Global Alliance for Genomics and Health (GA4GH) last week in London, and a person from the regulatory and ethics group quoted the United Nations about the rights for people to benefit from scientific progress:

Article 27.1 of The Universal Declaration of Human Rights states
“Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.”

As almost all nations have signed this treaty, it has the power of law.

This declaration is a big deal in genomics because, under the argument of protecting their privacy, some experts would prevent people from benefiting from scientific progress by preventing them from sharing their genomes with scientists. The experts argue that people don’t understand what they are doing, and hence they must be protected from themselves. Article 27.1 is a counterargument, in that benefiting participating in and benefiting from scientific progress is a human right, and you must be careful not to trample human rights