By CASEY J. LABRACK
Observer staff
April 9, 2008

Photo courtesy of the NATIONAL INSTITUTES OF HEALTH.
A close-up look of genes. DNA makes up a person’s genetic makeup.

Although MySpace profiles and Google search results pose the biggest privacy concerns for most people, some privacy advocates suggest safeguarding a new set of information that technology has made available: your genes.

Knowledge of the human genome, the complete set of DNA that comprises a person’s genetic makeup, could allow doctors to personalize medical treatment to their patients’ particular genes. But some people currently refuse genetic screenings for hereditary disease for fear that employers and health insurance companies will use the results against them.

The Genetic Information Nondiscrimination Act, which aims to prevent employers and insurance companies from using genetic tests against employees and clients, recently passed overwhelmingly in the U.S. House and received the blessing of President Bush, but stalled in the Senate.

The 2007 incarnation of the bill marks the closest the United States has come to a federal genetic information nondiscrimination law, which genetic privacy advocates argue is necessary to prevent the misuse of common genetic screenings.

Without the protection, many studies of hereditary disease will have greater difficulty in attracting participants, some research advocates argue.

“The United States needs policies that allow people to participate fully in [genetic tests] without fear that it could hurt their health care coverage,” said Joanne Carney, a director at the American Association for the Advancement of Science, a non-profit which organizes scientists and educators.

Fear of genetic discrimination has driven some to avoid screenings for conditions with known genetic causes, like breast cancer.
A poll by John Hopkins University Genetics and Public Policy Center conducted this spring revealed that only 24 percent of adults trust insurers with their genetic information, and just 16 percent trust employers with it.

“If the benefits of the [Human] Genome Project and an understanding of the genetics of disease are ever going to be realized, then the public needs to be willing to turn over their DNA to testers,” said Larry Thompson, a spokesman for the National Human Genome Research Institute, a division of the National Institutes of Health.

Since the scientific community is only just beginning to understand the nature of gene interactions, Thompson says that employers and insurers could easily misinterpret genetic test results in an effort to discriminate.

“It’s sort of like when you graduate from college and start to realize how much you don’t know,” said Thompson. “The remarkable progress we’ve made has just shown us that the current tools don’t tell us everything, let alone explain the complex interactions of the genome with the environment.”

No genome is perfect, giving employers and insurers many ways in which to discriminate in hiring and health coverage decisions, genetic privacy advocates argue.

“Most of us have about 20 or 30 glitches in our DNA,” said Thompson. “So we’re all equally at risk, just for different things.”
Some employers respond by arguing that they could be just as open to exploitation, saying that the current legislation has the potential to turn any firing resulting from a drug test into a legal battle over genetic discrimination.

“The big compensatory jury awards are the major problem with this legislation,” said Randall Johnson, a spokesman for the U.S. Chamber of Commerce. “We could be in for a lot of frivolous lawsuits.”

“I mean, we’re debating something that we don’t even know is happening yet,” Johnson added.

The debate over genetic discrimination was largely theoretical until April 2001, when a railroad company admitted to using blood samples collected during regular testing to screen for a rare genetic defect. The company, Burlington Northern, was reportedly looking for a rare genetic disorder that may predispose people to carpal tunnel syndrome, a relatively common ailment among its maintenance workers.

Johnson acknowledged the Burlington Northern case, saying, “I wish that Burlington Northern hadn’t done what they did, but we’re still talking about a form of discrimination with only one known example.”

For genetic privacy advocates, the railroad case proves not only that companies will seek to use genetic information, but also that they could misapply limited genetics knowledge in the process.

“Only one scientific paper had tied that gene to carpal tunnel syndrome,” said Thompson. “It’s currently controversial whether there’s really a connection–we certainly don’t completely understand it.”

Currently, 34 states and the District of Columbia have laws against genetic discrimination in employment.

The Genetic Information Nondiscrimination Act could nonetheless accelerate the progress of genetics-based medicine, Carney argued.

“A federal law would go a long way toward helping the study of breast disease, Hodgkin’s, and other hereditary disease,” said Carney. “We just need to guarantee the [genetic] information won’t be misused.”

The nondiscrimination bill was scheduled for floor debate in the Senate this summer but still hasn’t seen action there following a hold placed on it by Senator Tom Coburn, R-Okla.

The office of Senator Coburn wouldn’t return several calls on the matter, but in public statements has expressed concern for employers’ exposure to lawsuit under the act, saying on the Laura Ingraham radio show, “We setup more extortion for the tort lawyers under this bill than is necessary.”

The bill passed the House with just three votes in opposition, and was expected to face an easy approval process in the Senate before the Coburn hold.

The Bush administration has offered support for the bill, saying in a statement, “Unwarranted use of genetic information, and the fear of potential discrimination, threatens both society’s ability to use new genetic technologies to improve human health and the ability to conduct the very research needed to understand, treat, and prevent diseases.”

Advances in genetics could increase the effectiveness of medical treatments by customizing them to a patient’s unique DNA, an approach researchers called “personalized medicine.”

“In medicine, we have a one size fits all approach based on population studies,” said Thompson. “But for some small subset of the population, the same drugs that were effective in the population study will make them sick or kill them. The reason is we’re all slightly different from one another, genetically.”

If a doctor could bring up a file with a patients entire genome, then he could identify any possible drug conflicts, said Thompson. Drug makers could even tailor drugs to address the genetic roots of disease.

“Herceptin, a drug for the treatment of breast cancer, is one of the first drugs to target the effects of a particular gene,” said Thompson. “We’re at the beginning of these ideas, but the ideas will be very powerful for the future of medicine.”