Health and Medical News and Resources

General interest items edited by Janice Flahiff

Accessing your own genomic data is a civil right but requires strategies to manage safety [this right does not include most non-HIPPA collected as 23&me, Ancestry.com]

From 4 January 2018 Science Daily news item

The Genetic Information Nondiscrimination Act of 2008 expanded individuals’ access to genetic information by forcing changes to the HIPAA Privacy Rule. These amendments gave Americans a civil right to obtain copies of their own genetic test results stored at HIPAA-regulated laboratories. Researchers describe how civil rights and safety concerns collided after these changes and offers strategies to reconcile the two…….

…..”You only have an access right if the party that stores your data happens to be HIPAA-regulated. Most direct-to-consumer testing [as Ancestry.com and “23 & me”  and cloud data storage services are not HIPAA-regulated, so you may not have an access right if your data are there…

…..Giving people access to data from research laboratories is controversial because the genomic data they produce do not always contain clinically relevant information (only about 200 gene sequences have known clinical significance). Someone could misinterpret the data to pursue needless medical treatment or waste healthcare resources to clarify findings that they misunderstand.Giving people access to data from research laboratories is controversial because the genomic data they produce do not always contain clinically relevant information (only about 200 gene sequences have known clinical significance). Someone could misinterpret the data to pursue needless medical treatment or waste healthcare resources to clarify findings that they misunderstand……

……..”Having access to your own genomic data also lets you exercise important constitutional rights, such as your First Amendment rights to assemble and petition the government. You can go on social media and assemble groups of people with genes like yours and lobby Congress to spend more research dollars studying how those genes affect your health,” says Evans. “Like the right to vote, access to one’s own genomic data is a foundational civil right that empowers people to protect all their other civil rights.”

 

 

January 5, 2018 - Posted by | Health News Items, Uncategorized | , ,

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