Skip to main content
Premium Trial:

Request an Annual Quote

Guard the Data or Set it Free?

This post has been updated to clarify global alliance's policy.

There are two broad approaches for access to genomic data: keeping it private and secure or letting anyone see it, and there is no one accepted model for researchers to follow, writes Scientific American. Private data, though, limits how researchers can use it, while free data, like that uploaded by George Church's Personal Genome Project, make some research participants uncomfortable.

Perhaps, though, the solution, Sciam says, is offering research participants a choice. “People have different preferences: researchers should do their best to honor them rather than to do what's most convenient for themselves or what keeps the lawyers and regulators at bay,” says Misha Angrist, a geneticist at Duke University.

A global alliance of research organizations has issued a white paper stating the need for a common framework to share genetic and clinical data, including discussing the possibility of methods to restrict data access to researchers whose work in the field can be verified.