See this CBS News article: Want A Job In Akron? Hand Over Your DNA
The idea that GINA protects genetic tests from being held or used by employers and insurers is wrong. Genetic tests ordered by your doctor at any other time--when you are NOT seeking a job or insurance--can be collected and used by your employer and insurer to make decisions about you.
Lobbyists for the insurance industry and employers got this massive loophole into the bill, eliminating the intended consumer protections. Instead GINA should have forbidden employers and insurers to ever collect or access genetic tests.
This is one of the key reasons we need Congress to restore OUR rights to control our personal health information, so WE can make sure employers and insurers do not get our genetic records. Genetic information is so sensitive it should ONLY be seen by health professionals directly involved in our treatment, or if we choose to participate in research and share it.
Thursday, October 29, 2009
Monday, October 19, 2009
The Word Is Out: Do You Know Who Owns Your Health Records?
This WIRED article, Medical Records: Stored in the Cloud, Sold on the Open Market, is based on yesterday’s NYTimes story that closed by quoting Patient Privacy Rights.
It points out the 2 KEY ways that electronic health systems violate patient privacy:
• Health technology vendors sell patient records without consent
• It is impossible to de-identify health information, so promises that the data can’t be re-identified must to be verified by outside audits
The chart at the top of the story is from our website—it shows the millions: businesses and government agencies---that today can do whatever they want with our health records, including selling them for profit.
The ‘fix’ is that Congress must restore patients’ rights to control personal health information------this right has been the foundation of the healthcare system for 2,400 years.
No one else should own our health records and no one should have access to them without our consent.
It points out the 2 KEY ways that electronic health systems violate patient privacy:
• Health technology vendors sell patient records without consent
• It is impossible to de-identify health information, so promises that the data can’t be re-identified must to be verified by outside audits
The chart at the top of the story is from our website—it shows the millions: businesses and government agencies---that today can do whatever they want with our health records, including selling them for profit.
The ‘fix’ is that Congress must restore patients’ rights to control personal health information------this right has been the foundation of the healthcare system for 2,400 years.
No one else should own our health records and no one should have access to them without our consent.
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