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Friday, January 5, 2018

Changing genetic privacy rules may adversely affect research participation

Hayley Peoples
Baylor College of Medicine Blogs
Originally posted May 26, 2017

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 of a medical examination. Maybe, like me, you underwent testing and received results as part of a class in college.

Do you ever worry about what could happen if your information landed in the wrong hands?

If you do, you aren’t alone. We’ve previously written about legislation affecting genetic privacy and public resistance to global data sharing, and the dialog about growing genetic privacy concerns only continues.

Wired.com recently ran an interesting piece on the House Health Plan and its approach to pre-existing conditions. While much about how a final, Senate-approved Affordable Care Act repeal and replace plan will address pre-existing conditions is still speculation, it brings up an interesting question – with respect to genetic information, will changing rules about pre-existing conditions have a chilling effect on research participation?

The information is here.