Could Genetic Data Be Misused?

Scientists now know how to map the entire human genetic code. Also, gene-sequencing techniques have been speeded up dramatically. Yet while these discoveries have led to cheaper and more readily available genetic tests, experts warn that regulations have lagged behind. That's the message from the American Heart Association in a policy recommendation published in the journal Circulation.

 

In a May 29th release from the AHA about the recommendations, Euan A. Ashley, M.R.C.P., D.Phil., chair of the policy statement writing group and director of the Center for Inherited Cardiovascular Disease at Stanford University School of Medicine wrote: “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?”

Here are the key recommendations in the policy statement, with a focus on heart and blood vessel diseases:

Stopping the practice of awarding patents for observing a gene;

Establishing federal oversight of genetic tests;

Expanding anti-discrimination legislation.

That last one is especially important for Boomers. According to the release, there are "no protections against genetic discrimination by long-term care, disability and life insurance providers. To maximize the health benefits of genetic testing, federal laws should ensure that patients can undergo such testing without financial or other penalties."

In addition, the recommendations include: Genetic testing and counseling in specialized centers; Reimbursement codes for screening of family members of those affected by genetic disease; Increased funding for clinical research in genetics; More studies on the genetic link to heart and blood vessel disease risk; Genetics education for healthcare providers and patients;  In-depth studies of genetically mediated responses to drugs, or pharmacogenomics, accompanied by expert consensus before changing prescription information. The new proposals are the result of an expert panel of geneticists, physicians, nurses, genetic counselors and other medical professionals analyzing, discussing and reaching consensus on genetic research and testing practices over a two-year period. “The safeguards are essential for patients in a new age of medicine," Ashley is quoted as saying in AHA release. "This is an unbelievable time in genetics. The pace of change has been astounding. You can imagine a world now where every patient might have their genome in the medical record, and the doctor might be able to simply look it up when prescribing medication.”  
1 2 Next
Print Article