Facebook Twitter

Genetic mapping spurs fears of bias

Experts worry data could be used to deny jobs, health insurance

SHARE Genetic mapping spurs fears of bias

WASHINGTON — Mapping the human genome opens a new era for medical science — and a new frontier for potential discrimination.

New genetic research may make it possible to identify an individual's lifetime risk of cancer, heart attack and other diseases. Experts worry that this information could used to discriminate in hiring, promotions or insurance.

Employers and insurers could save millions of dollars if they could use predictive genetics identify in advance, then reject workers or policy applicants who are predisposed to develop chronic disease.

Thus, genetic discrimination could join the list of other forms of discrimination: racial, ethnic, age and sexual.

Genetic discrimination is drawing attention this week because of the first publication of the complete human genome map and sequence. Two versions, virtually identical, were compiled separately by an international public consortium and by a private company.

The journal Nature is publishing the work of the public consortium and the journal Science is publishing the sequence by Celera Genomics, a Rockville, Md., company.

Fear of such discrimination already is affecting how people view the medical revolution promised by mapping the human genome. A Time/CNN poll last summer found that 75 percent of 1,218 Americans surveyed did not want insurance companies to know their genetic code, and 84 percent wanted that information withheld from the government.

"There has been widespread fear that an individual's genetic information will be used against them," said Sen. Bill Frist, R-Tenn. "If we truly wish to improve quality of health care, we must begin taking steps to eliminate patients' fears."

Last week the Equal Employment Opportunity Commission filed its first lawsuit challenging genetic testing.

Burlington Northern Santa Fe Railroad was charged in the suit with conducting genetic testing on employees without their permission. At least one worker was threatened with dismissal unless he agreed to the test, the agency charges.

The EEOC said that the genetic tests were being run on employees who filed for workers compensation as the result of carpal tunnel syndrome, a type of repetitive motion injury common to keyboard operators. Some studies have suggested that a mutation on chromosome 17 predisposes to the injury.

A survey of 2,133 employers this year by the American Management Association found that seven are using genetic testing for either job applicants or employees, according to the journal Science.

Many experts believe the only solution to potential genetic discrimination is a new federal law that specifically prohibits it.

"Genetic testing has enormous potential for improving health care in America, but to fully utilize this new science, we must eliminate patients' fears and the potential for insurance discrimination," said Frist, the only physician in the Senate.

Frist and Sen. Olympia Snow, R-Maine, are introducing legislation that would prevent insurance companies from requiring genetic testing and ban the use of genetic information to deny coverage or to set rates.

A similar bill, the Genetic Information Nondiscrimination in Health Insurance Act, passed the Senate in 2000 as part of an appropriations bill, but the provision later was removed.

Writing this week in the journal Science, Sens. James M. Jeffords, R-Vt., and Tom Daschle, D-S.D., say they both favor legislation prohibiting genetic discrimination.

"Without adequate safeguards, the genetic revolution could mean one step forward for science and two steps backward for civil rights," they write. "Misuse of genetic information could create a new underclass: the genetically less fortunate."

Jeffords supports the Frist-Snowe bill, which limits the anti-discrimination issues to insurance.

Daschle, however, favors a broader measure that would include genetic discrimination in employment and elsewhere.

The Senate Democratic leader said in Science that he favors laws that would conform to the Universal Declaration of the Human Genome and Human Rights.

That declaration, by the U.N. Education, Scientific and Cultural Organization (UNESCO) states: "No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity."