UNC lauds genetic testing

Entrepreneur Ryan Phelan spoke Tuesday to a packed room of medical clinicians and researchers about the benefits of personalized medical care and genetic testing.

Phelan was the recipient of the UNC Institute for Pharmacogenomics and Individualized Therapy’s 2009 award in patient service. The award recognizes her work as an advocate for genetic testing.

“This is the direction health care is going, and UNC is at the frontier of this research,” she said.

Phelan spoke at the UNC Lineberger Comprehensive Cancer Center, which recently received an award of more than $12 million dollars to conduct further research into genetic testing and DNA mutations.

Doctors use genetic testing to reveal changes in DNA that can cause diseases and illnesses. Genetic testing can also predetermine a patient’s reaction to certain drugs.

Phelan is the founder and CEO of DNA Direct, a San Francisco-based company that serves as an online and personal resource for patients, physicians and health care providers about genetic testing.

“I’ve been at this for 30 years, and how patients make health care choices and who pays for them has always been at the forefront of my work,” she said.

Phelan said her background in business improves her understanding of all sides of the issue of genetic testing.

In 1995, Phelan founded Direct Medical Knowledge, a Web site dedicated to helping patients sift through medical literature to find the information that applies to them.

Four years later, the company was acquired by the medical Web site WebMD, and her research became the foundation for the site’s database.

“People used to say that my service was only for the worried well,” she said.

“But I like to say it’s for the rightly worried.”

Phelan estimated there are fewer than 2,000 doctors specializing in genetics, which she said emphasizes the need for creating an accessible database of genetic information.

“Our mission is to act as a link between patients, physicians and health care providers to ensure that the patient receives personalized medical care,” she said.

She added that too often patients are tested for the wrong illness — and that leads to mistrust from insurance companies who pay for the tests.

Through genetic testing, patients can obtain access to drugs that specifically target their disease.

“Patients have a role to be their own advocate and we’re here to help.”

Contact the University Editor at udesk@unc.edu.