Genetic testing co. spurs privacy, ethical questions

A new company that offers genetic testing presents a privacy issue, according to patients' rights advocates.

Navigenics officially launched its company after closing on a $25 million investment from Kleiner Perkins Caufield & Byers, Sequoia Capital and Mohr Davidow Ventures. The Redwood Shores, Calif.-based biotechnology firm will conduct whole genome scanning and analysis to help customers determine genetic material that could lead to diseases later in life.

The hope is that customers will use the information to develop preventive techniques and improve their healthcare.

However, individual patient information is still vulnerable in electronic health systems, and it would be difficult for customers to determine whether any company is selling their data to third parties, said Deborah Peel, a psychiatrist and founder of the Patient Privacy Rights Foundation.

There is an ethical question to storing genetic testing information as well, Peel added. If a patient is predisposed to a specific, costly disease, there is nothing to stop an insurance company from refusing insurance if they know about the illness, she said. "There is no federal law to stop employers or insurers from using genetic data to discriminate against you and your children and relatives," Peel said.

Navigenics is partnering with several professionals in the healthcare industry, including clinical, scientific, policy and ethics advisers, to contend these types of issues.

Several studies have correlated genetics to diseases—Navigenics wants to educate patients about what those correlations could mean for their lives using affordable and reliable methods, the company said in a written statement.

"The convergence of technology and biomedicine allows us to detect and act now to prevent the conditions that usually aren't revealed until later in life. This is the direction that healthcare is heading, and Navigenics has the opportunity to do it right the first time," said David Brailer, the former director of the Office of the National Coordinator for Health Information Technology, who is serving on Navigenics' board, in a written statement.

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