'Informed cohort' provides personal stake in genetics research

Patients are often reluctant to give up DNA samples for research, not knowing what the information will be used for and feeling there's no personal benefit to them.

The heads of the Genomics and Informatics programs at Children's Hospital Boston argue that the current way of doing genetic research -- with completely anonymized data to protect patient privacy -- is actually paternalistic and detrimental to patients, who could otherwise be getting back vital health information.

They've created a mechanism for allowing patients -- if they wish -- to be alerted to discoveries that may affect them (say, a genetic variant in their DNA, predicting benefit from a particular medication) while still remaining anonymous. The authors believe this so-called "Informed Cohort" design is ethically superior to the current way of doing research, making patients full partners in the enterprise, and more likely to participate in studies because they have more to gain. For example, they could benefit from incidental findings that were never anticipated when data were first gathered. Children's Hospital Boston has committed to piloting the Informed Cohort in several of its clinics -- getting DNA from all comers - with the hope of eventually inviting all hospital patients to opt in.