Parkinson’s researcher turned patient shares information 'for greater good'
Health experts frequently advocate for scientists to conduct clinical studies that use bio-samples and data that have the patient’s identity removed. In Personalized Medicine, some health professionals from the Michael J. Fox Foundation stated that using this approach could help scientists discover and replicate new treatments and understandings of Parkinson’s disease.
The most recent Parkinson’s Progression Markers Initiative, led by the Michael J. Fox Foundation, is a significant biomarker study. It provides real-time data, having been downloaded over 800,000 times. These initiatives are designed to make it easier for scientists to analyze data from several studies at once, which speeds up research.
“As a researcher turned patient, I understand the importance of clinical research data and results,” Dubman said. “I want my information to be shared for the greater good. While I certainly have concerns about use and reuse of my data, these can be alleviated by responsible sharing of data that protects patient privacy and security; by incentives for researchers to produce and ensure high-quality data for sharing with peers, the broader scientific community and the public; by increased data circulation and by data sharing encouraged or mandated by government.”