Time to Raise Some Hell
Researchers, research institutions, health care organizations, and others are busily creating vast repositories of tissue samples and health information about hundreds of thousands, or millions, of people. Some of these repositories are mainly samples, some are mainly data (silicon-based), and some are both. I will refer to them all broadly as "biobanks."
These biobanks are being created for good reasons. Researchers are desperate to get more-more samples, more analyses, more health records, more data, from more people, with more diseases, in more different settings. And they are right to be eager. Massive quantities of data may allow us to tease out the causes of various diseases and give us leads toward prevention, treatment, or cures. More immediately, research use of detailed electronic health records may allow us to make today's medicine safer, cheaper, and more effective. (Research from an HMO's electronic health records, for example, helped reveal the heart risks of Vioxx.)
But these biobanks also hold risks. The people whose tissue, DNA, or health records are stored in biobanks could be harmed. And cases of such harm could prompt a backlash, ultimately slowing medical progress. In their desperate quest for data and samples, researchers, aided and abetted by narrow interpretations of the laws, regulations, and ethical precepts governing human subjects research, are riding roughshod over the reasonable expectations-and the appropriate rights-of the people whose data and materials they are using.