Hastings Center News

How Much Control Should You Have Over Your Biological Data?

When you donate a sample of blood or saliva for research purposes, is it your property? What about the genetic and other data it contains? Should you be allowed to specify the type of research it is used for? These and other ethical questions are at the heart of a new book, Specimen Science: Ethics and Policy Implications.

Hastings Center research scholar Karen Maschke wrote a chapter on governance of the repositories of biological samples donated for research – repositories that are poised to grow next year with the launch of the federal government’s All of Us research program, which aims to recruit more than 1 million people to contribute personal health data and genetic information to a national research repository, or biobank. The ambitious program aims to generate preventative care and treatments specific to an individual, but the program also raises questions about the appropriate role of research volunteers in the administration of biobanks. “Biobanks will need to provide opportunities for meaningful participant engagement,” says Maschke. Read about the book here.