Genentech writes a check and PatientsLikeMe agrees to share “de-identified” data for 5 years | MedCity

Apparently, PatientsLikeMe’s ‘Openness is a good thing’ philosophy doesn’t apply to their own business—the amount of the payment from Genentech hasn’t been disclosed.

From their ‘Openness Philosophy’ page:

Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

Shouldn’t it be up to the patients participating in the site to decide who they share the data with? Shouldn’t the patients themselves profit from that sharing?

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