A Camden-based study, which will explore using genetics to personalize health-care treatment, raises privacy issues.
The frontiers of medicine are being pushed forward again, and to ensure the protection of patients, federal law must catch up.
On Tuesday, the Coriell Institute for Medical Research in Camden launched a groundbreaking study to create genetic profiles for patients, which could lead to a personalized treatment and prevention regimen.
Coriell will work with Cooper University Hospital, Fox Chase Cancer Center in Philadelphia and Virtua Health in Marlton to enroll 10,000 participants over three years.
The study results are expected to revolutionize current medical practice, where practitioners use standard treatments based on group studies. Coriell is seeking to find out what will work to cure individuals, as well as discover unknown genes that increase a person's risk of cancer, diabetes and other diseases.
Coriell also plans to investigate how to make this information available to patients and doctors in a secure Internet-based system. Patients would determine who could have access to their genetic history.
In New Jersey, patients who discover they are at risk for diseases that are expensive to treat and potentially fatal cannot be discriminated against by employers or health insurers. Yet, if the same protections don't exist in other states, patients are not fully protected from discrimination. That's a security gap that U.S. Rep. Rob Andrews, D-N.J., is trying to close.
Andrews was a primary sponsor of the Genetic Information Nondiscrimination Act, which passed the House in April. President Bush said he would sign it.
Yet, the bill is awaiting action by the Senate. We urge U.S. sens. Robert Menendez and Frank Lautenberg, both D-N.J., who are bill co-sponsors, to press the Senate leadership into bringing this legislation up for approval.
To ensure medical advances deliver the most benefit to patients, lawmakers must keep the laws relevant to changes in health-care options.
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