Tags: genetics | safeguards | aha

Safeguards Urged on Genetics Data

Monday, 04 June 2012 10:51 AM

As the promise of genetic research, testing and diagnosis has grown so has the potential for misuse of such health information – underscoring the need for new safeguards for patients, according to new policy recommendations issued by the American Heart Association.
The recommendations, published in the journal Circulation, call for U.S. Food and Drug Administration oversight of genetic tests, legal reforms that prohibit some commercial aspects of gene patenting and expanding legislation to combat discrimination based on genetic information.
The AHA noted recent advances in mapping the entire human genetic code, or genome -- completed in 2003 -- has help drive new gene-sequencing techniques and cheaper genetic tests, but regulations have lagged behind.

"The potential of the new technologies is incredible," said Euan A. Ashley, a Stanford University School of Medicine heart specialist who headed the effort to write the new policy recommendations. "Genetic testing provides a tremendous opportunity but also a challenge in being responsible with that information. If the information is available, how best do we use it to really improve care for individual patients?"
Among the specific AHA policy statement recommendations:
• Stop the practice of awarding patents for observing a gene.
• Establish federal oversight of genetic tests by the FDA to ensure quality and safety.
• Expand anti-discrimination legislation to protect patients against misuse by long-term care, disability and life insurance providers. The 2008 Genetic Information Nondiscrimination Act bars discrimination based on genetic information by health insurance companies and employers, but does not prevent insurance companies from withholding coverage from patients who have already been diagnosed with a genetic disease such as congenital heart disease.
• Provide genetic testing and counseling in specialized centers.
• Standardize reimbursement for screening of family members of those affected by genetic disease.
• Increase funding for clinical research in genetics.

© HealthDay

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As the promise of genetic testing has grown so has the potential for misuse of such health information.
Monday, 04 June 2012 10:51 AM
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