Harvard Scientists Say Research Subjects Should See Data

People who give blood or other tissues for research should be able to track their use through the scientific process to see the data their activities or samples generate, Harvard University scientists said.

The standard one-way flow of information creates an unequal relationship that blocks participants’ ability to hold scientists accountable for how the data is used, Harvard genetics researchers George Church and Jeantine Lunshof said in a policy paper written with Barbara Prainsack from King’s College London. The paper will be published tomorrow in the journal Science.