Trusting big health data
It’s here – big data. Not only that, big health data. Most of us are aware (or should be made aware) that data about us
Read More
data sharing
‘MARRVEL’: a new way to compile big data in a human-centric way
When a group of researchers in the Undiagnosed Disease Network at Baylor College of Medicine realized they were spending days combing through databases searching for
Read More
Changing genetic privacy rules may adversely affect research participation
Do you know your genetic information? Maybe you’ve taken a “23andMe” test because you were curious about your ancestry or health. Maybe it was part
Read More
Trade secrets and health data access: How policy plays a role
A “quiet revolution” in medicine is underway that involves tailoring care to each patient’s unique genetic and health profile. To be successful, that revolution depends
Read More
Collaboration matters when looking for answers to undiagnosed diseases
It used to be that identifying genes involved in a particular disease was like finding a needle in a haystack. Nowadays, scientists still have to
Read More
Examining public resistance to global genomic data sharing
Maybe you emigrated from another country or have family members who did so; or perhaps you were inspired by a visit to the United Nations
Read More
Making the case for global genomic data sharing
The scientific community may be overlooking a significant barrier to international collaboration reflected in a series of recent surveys: potential public resistance to sharing of
Read More