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A question of privacy

A question of privacy

Most U.S. residents are shying away from genetic testing because they fear that information may fall into the hands of employers or insurers who might use it to discriminate against them, experts say.

The Genetic Information Nondiscrimination Act of 2007 (GINA) proposes to ban discrimination on the basis of genetic information in health insurance and employment. Identically named bills, which are pending in both houses of Congress, also propose to extend medical privacy and confidentiality rules to the disclosure of genetic information.

While everyone--including opponents--endorses the goals of the legislation, there is a difference of opinion about how to achieve them without opening the door to unintended consequences.

Supporters of GINA in the Coalition for Genetic Fairness include civil rights, patient and health care groups, and a few employers. In addition, about half of all members of Congress are co-sponsoring the bills, which the Bush administration has endorsed in concept.

They favor uniform, federal nondiscrimination laws to allay people's fears about genetic information being used against them at work or when they seek insurance. Only with new protections in place will people take part in clinical trials that are needed before the Humane Genome Project can realize its prevention goals, GINA supporters say.

The most outspoken opponents of the bills are mainly Washington-based trade and professional organizations that include the U.S. Chamber of Commerce, the National Assn. of Manufacturers, the National Retail Federation, the Society for Human Resource Management and others.

As members of a coalition--the Genetic Information NonDiscrimination in Employment Coalition, or GINE--opponents say the proposed legislation is "overly broad." They are concerned that the federal bills, which do nothing to address inconsistent state laws, would result in increased amounts of frivolous litigation--and potentially, punitive damages--as a result of confusing recordkeeping and technical requirements. In addition, opponents fear it would require employers to offer health plans covering all treatments for genetic-related conditions.

After 12 years of trying to get genetic information nondiscrimination bills approved in one or both chambers, supporters are far more optimistic this year.

"We are closer than ever to enactment," U.S. Sen. Edward Kennedy, D-Mass., said in a statement earlier this year when Sen. Olympia Snowe, R-Maine, reintroduced Senate Bill 358 with 25 cosponsors, including Mr. Kennedy. The Senate Committee on Health, Education, Labor and Pensions subsequently adopted it.


During the last two Congresses, the full Senate unanimously approved similar measures "but the leadership of the House refused to bring it to a vote," Mr. Kennedy said.

However, with Democrats now in control of the House, the House Committee on Education and Labor for the first time adopted its version of the bill, H.R. 493, this year. Rep. Louise M. Slaughter, D-N.Y., introduced it in the House with 205 cosponsors.

"For the potential of genetic technology to be realized, we need to make genetic testing something that is commonplace, rather than something that is feared," Rep. Slaughter said in testimony supporting the bill.


Rep. Slaughter cited precedents that she said indicate the need for legislation:

  • In 2000, the Burlington Northern Santa Fe Railway performed genetic tests on employees without their knowledge or consent in an effort to determine if they were genetically predisposed to carpal tunnel ailments.
  • In 1998, the U.S. Department of Energy's Lawrence Livermore National Laboratory was found to have been performing tests for syphilis, pregnancy and sickle cell anemia on employees without their knowledge or consent.
  • In the 1970s, many African-Americans were denied jobs, educational opportunities and insurance based on their carrier status for sickle cell anemia, despite the fact that a carrier lacks the two copies of a mutation that are needed to develop the disease.
  • Beginning 20 years ago, Congress appropriated nearly $3.5 billion to fund the promise of genomic research, said Karen H. Rothenberg, a law professor and dean at the Baltimore-based University of Maryland School of Law.

    "The return on this investment is substantial and has the potential to transform medicine as we know it. But unless Congress acts to address the perils associated with unauthorized dissemination of citizens' genetic information, we may never be able to make the transition from the research laboratory into the doctor's office," Ms. Rothenberg said in recent testimony before the House committee.

    Completed in 2003, the Human Genome Project sought to identify individual genes in human DNA, store the information in databases and make it more publicly available.

    "We will never unlock the great promise of the Human Genome Project if Americans are too paranoid to get genetic testing," Rep. Judy Biggert, R-Ill., said in a statement when the bill was reintroduced. She was chief sponsor of the House bill in the last congressional session.

    "Genetic research holds tremendous promise to unlock new diagnoses and new treatments, and even to assist in the creation of pharmaceutical therapies tailored to an individual's genetic makeup," Ms. Rothenberg said. "However, scientific research and development cannot progress without clinical trials and these trials can only move forward only if individuals who could benefit are willing to participate."

    According to several studies--including those by the National Institutes of Health and genetic professionals--the U.S. public is fearful that their genetic information may be made available to health insurers or employers and they may face discrimination because of it, experts say.

    Currently, "there is no uniform protection against the use of, misuse of and access to genetic information in the workplace," Ms. Rothenberg said.

    All states and the District of Columbia have laws that limit use of genetic testing in varying ways, according to November data from the Kansas City, Mo.-based National Assn. of Insurance Commissioners. The scope of protection under state laws "varies widely," however, Ms. Rothenberg said.

    At the federal level, there have been "patchwork approaches" through the enactment of some nondiscrimination laws, but they have "loopholes and gaps in coverage" in terms of their applicability to genetic information, she said.


    In a recent letter, opponents of GINA asked Congress not to support the legislation in its current form. They are willing to help craft a more acceptable proposal, said Mike Eastman, executive director of labor policy for the Washington-based U.S. Chamber of Commerce. "Our intention is that any legislation should be narrowly tailored...while reducing the opportunity for frivolous litigation."

    In addition, many employers' concerns relate to issues about how the measures would be implemented in the workplace. For example, opponents questioned whether employers would be required to keep two sets of confidential health files for employees--one with genetic information and one with other health information.

    America's Health Insurance Plans, which represents large health insurers, said its members "have concerns about the wording and language of the bill that could have unintended consequences" on quality improvement activities and health care operations, said Mohit Ghose, vp-public affairs. Specifically, the Washington-based AHIP is concerned that health plans might be prevented from working with providers to seek and identify genetic markers that could have a significant impact on patients' treatment options.

    The American Academy of Actuaries' Health Practice Council added its views to deliberations in a February letter it sent to congressional representatives. The Washington-based group says it seeks to provide objective analysis, so it does not endorse or oppose specific proposals.

    "The possible future use of genetic information for underwriting medical expense insurance is a potentially significant issue only in the voluntary individual health insurance market," wrote John J. Schubert, the council's vp. "In that market, there is a concern that a ban on the use of any genetic information--particularly if the definitions are too broad--could conflict with the principles that underlie the financial soundness of the market."

    The council was particularly concerned that "barring insurers from obtaining test results already known to the applicant could result in an imbalance of information that would leave insurers at a disadvantage" for adverse selection. If applicants who knew they had a problem disproportionately purchased insurance, it "would have a direct impact on premium rates, ultimately raising the cost of insurance to everyone," Mr. Schubert wrote.

    In her testimony, Ms. Biggert emphasized that the latest version of the bill "is much more business-friendly" than the previous version as a result of prior negotiations. For example, she said it states a "clear and precise definition" of genetic information, protects the "inadvertent acquisition" of genetic information, and requires that claimants first exhaust administrative state and federal procedures in the case of alleged misuse of genetic information. It also provides for caps on damages that vary depending on the size of the firm.