With advances in medicine also come new challenges for scientists, doctors and drug developers: finding patients for their studies. In an age of the Internet and social media, many potential patients have privacy concerns about providing confidential data for research.
With advances in medicine also come new challenges for scientists, doctors and drug developers: finding patients for their studies. In an age of the Internet and social media, many potential patients have privacy concerns about providing confidential data for research.
That may soon change with the help of Genetic Alliance, a nonprofit that advocates for people with rare genetic disorders. Genetic Alliance is launching a new site called Reg4All that aims to entice more patients into clinical trials and disease research with a new guarantee on how their data is going to be used, giving the user unprecedented privacy controls.
Unlike many biobanks and DNA databases where participants sign broad consent forms that leave them little control over data, Reg4All allows patients to fine-tune and customize how their information is used, including how it’s shared. Now particular researchers, institutions, or people studying a specific disease will need specific consent from the patient on how they can use the information before they have access to it. The website will track who uses their data and how.
This new investment in technology for privacy controls can expand interest in research and ultimately find cures for rare diseases. Developers hope this will get more people interested in research now that it’s not just a generic disclosure they’re signing.