data sharing Archives - Baylor College of Medicine Blog Network

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

‘MARRVEL’: a new way to compile big data in a human-centric way

July 7, 2017data sharing, database search, Gene variants database search, gene variants databases, human genes, MARRVEL

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

Policywise

Changing genetic privacy rules may adversely affect research participation

May 26, 2017June 6, 2017BabySeq, Center for Medical Ethics and Health Policy, data sharing, Genetic Privacy, Hayley Peoples, health policy, Health Privacy, Research Policy

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

Policywise

Trade secrets and health data access: How policy plays a role

May 19, 2017May 19, 2017Center for Medical Ethics and Health Policy, Christi Guerrini, data sharing, Defend Trade Secrets Act, Genetics, Health Law, HIPAA, law, Patent Law, Trade Secret

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

From The Labs

Collaboration matters when looking for answers to undiagnosed diseases

February 10, 2017data sharing, de novo mutation, developmental delay, Human genetics, NACC1, Rare Diseases, undiagnosed diseases, whole exome sequencing

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

Policywise

Examining public resistance to global genomic data sharing

February 1, 2017February 1, 2017Center for Medical Ethics and Health Policy, data sharing, genome, Global Health, globalization, Mary Anderlik Majumder, public opinion

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

From The Labs

Making the case for global genomic data sharing

January 26, 2017data sharing, ethics and health policy, genomic medicine, Global Data Sharing, global genomic data

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