Future protection may be needed to curb gene bias

Zarana Sanghani

Staff Writer

If progress in genetic technology is to continue, the government must impose rules guarding confidentiality and preventing discrimination.

Mark Rosthein, director of the Health Law and Policy Institute, presented that view at the Elizabeth Rockwell President's Executive Lecture Wednesday.

"Genetic privacy is the right of the individual to seek genetic information about themselves without fear of (the loss of) employment opportunities or any other of life's opportunities," Rothstein explained.

The advances made in genetics allow scientists to pinpoint genes that may cause diseases and let them treat patients accordingly.

To find the genes responsible for diseases, people with those diseases must volunteer to take tests.

Melanie Sohocki, a doctoral student at The University of Texas, works in a genetic laboratory searching for a cure for a variety of inherited eye diseases. Her research relies heavily upon volunteers.

"(The volunteers) should not be penalized for letting us test them to find a cure that may help many others," Sohocki said. "If the employer knew that these people are carrying genes that could make them go blind, is that employer going to hire them?"

Rosthein discussed all personal genetic information, not just that which is research-based. He argued that policies should be specific to each type of situation and not require only the genetic lab or only third parties to maintain confidentiality.

"First, find what interests are involved," Rosthein urged. "Are there personal interests or social interests involved?"

He presented surveys showing that a majority of the public would opt not to take genetic tests if the people could not be sure of confidentiality.

"Even if we have these tests that could save lives, people probably won't take them because of the possible social implications," Rosthein said.

Yet granting absolute protection for genetic information may be impractical, he added. Laboratories find it hard to discern genetic and other medical information, and keeping records completely anonymous could stigmatize genetic progress.

Both Rothstein and Sohocki's primary concern was the danger of insurance companies and employers misusing genetic information. Employers and insurance companies already review applicants' medical information, such as physical handicaps or past health problems, but genetics poses new problems and could lead to behavioral characterizations.

"The concern is not about the science so much but the genetic testing and how it may label people," Rosthein said. "Behavioral genetics is our biggest problem."

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