WASHINGTON, D.C. — Given current estimates that every human carries 5-50 genetic mutations that can potentially spell disease during the course of life, congressmen generally agree that genetic discrimination must be “outlawed,” according to a report from the July 2002 issue of USmedicine.com.
While President Bush vowed to protect individuals from genetic discrimination by employers and health care insurers, Congress debated the merits of two competing bills that proponents said would outlaw such discrimination.
As scientists both public and private continue to decipher the manifold human genome, the implications of genetic profiling have been creeping into daily life for years. Presently, genetic information is collected in a variety of ways, ranging from outpatient tests for cystic fibrosis to simple verbal communications regarding family history of disease. By 1995, 22 per cent of Americans with a known genetic condition in their family had been denied health care insurance, regardless of whether or not they were already sick, according to the National Partnership for Women and Families.
In addition, many Americans try to guard their medical privacy by either postponing genetic tests-and therefore postponing potentially life-saving treatment-or frequently switching physicians to avoid building a genetic profile, according to medical privacy advocates.
Though outlawing genetic discrimination appears to be a no-brainer, Republicans fear that overly broad regulation would clog the courts and place employers between “a rock and a hard place,” while Democrats advocate “plugging gaps” left by the Americans with Disabilities Act (ADA) of 1990 and the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The ADA mandated the removal in public venues of physical and communication barriers for disabled people while HIPAA later required privacy of health care information and the continuation of health care coverage for workers in the event of an employment change.
According to Sen. Hillary Clinton (D., N.Y.), who presided over a hearing of the full Senate committee on health, education, labor and pensions last month, the Republicans’ Snowe/Jeffords bill (S. 382) fails to back up Bush administration advocacy for protection against both employer and health care insurer discrimination.
Sen. Clinton, who co-sponsored a competing bill (S. 318) with majority leader Sen. Tom Daschle (D., S.C.), said the Republican bill would exempt information collected from tests that are not specifically designed to collect genetic information but could one day yield such data-such as blood tests. Also, Sen. Clinton said the Republican bill does not attempt to fill gaps left by HIPAA, which she said does not prohibit workers compensation insurers from obtaining genetic information and does not prohibit health care insurers from raising group rates based upon one member’s legally obtained genetic information.
“Clearly, this is a problem that has enormous implications for the entire health care industry,” Sen. Clinton said.
Regardless of disagreement between congressional Republicans and Democrats about the elimination of exemptions to HIPAA, Bobby Jindal, secretary for planning and evaluation of the Department of Health and Human Services, told Sen. Clinton that the Bush administration supports the spirit of HIPAA and says gaps should be closed. The administration, however, opposes the creation of a separate classification for genetic information, which Jindal said would create unnecessary confusion.
“One of the goals of the HIPAA privacy rule is that all health information should be afforded the same high standard of privacy protection. Consistent rules for privacy should be the goal,” Jindal said.
“We’re also against discrimination of health care premiums on the basis of genetic information,” Jindal added.
Asked by Sen. Clinton whether or not the Bush administration would advance its own proposal to outlaw genetic discrimination by both employers and health care insurers, Jindal replied, “We’re willing to work with you.”
Potential Redress Of Genetic Discrimination
An irony of current medical discrimination law is that people with manifestations of disease are often afforded more protection compared to those who have merely the potential to develop disease, according to medical privacy advocates. For instance, the ADA has been interpreted by courts to provide some protection against genetic discrimination but offer little protection to people with genetic markers that have not yet developed into a disability, according to a written statement by Sen. Edward Kennedy (D., Mass.), health, education, laborand pensions committee chairman, who was absent because of concurrent senate hearings.
Furthermore, loopholes in HIPAA, advised Joanne Hustead, senior counsel at the Institute for Health Care Research and Policy at Georgetown University, allow employers to obtain genetic information through a blanket information release and provide no redress for victims of such information collecting.
“There are many similarities between the two [genetic discrimination] bills,” said Hustead. “Both build upon HIPAA, but only one bill-the Daschle bill-directly regulates employers” by prohibiting them from collecting genetic information, she said.
“Provisions in the [Daschle] bill close some of the gaps in HIPAA and cover medical privacy gaps in ADA,” Hustead added.
Deborah Ness, executive vice president of the National Partnership for Women and Families, told the committee that she supports uncapped damages for genetic discrimination, arguing that damages capped at, for example, $100 per day allow potential scofflaws to actually calculate the risk-benefit of breaking the law, providing an incentive sometimes to breach medical privacy. Ness pointed to the example of Burlington Northern Santa Fe Railway of Fort Worth, Texas, which last year stopped its practice of testing employees who filed claims for carpal tunnel syndrome. The company only stopped genetic testing after the Equal Employment Opportunity Commission (EEOC) filed a federal lawsuit last February to challenge the practice, according to newspaper and database accounts.
While Burlington Northern Santa Fe Railway’s recent case may be the exception among most employers, Ness said that uncapped damages under medical privacy torts would be the only way to dissuade large employers from calculating the risk of breaking the law.
Though supportive of including genetic data with other protected medical information, employers should not be placed between a “rock and a hard place,” said Ronald Adler, president of Laurden Associates, Inc., a human resources consultant firm.
Adler said he was concerned that companies would be unfairly vulnerable to lawsuits under Daschle’s bill because employers cannot help but passively collect some health information, as happens when employers approve such benefits as medical leave.
Once employers receive that medical information, “if an employer makes a termination decision, it could be alleged that the employer made the decision based on” medical information, Adler said. Ness countered, however, that employers could comply with the law by acquiring only general information rather than learning, for example, that an employee has terminal cancer. Yet, Hustead said the Daschle bill would in fact safeguard employers from litigation based upon the passive collection of medical information.
Presently, 20 per cent of American employers collect information on medical history, Sen. Clinton noted.
Another area of conflict between proponents of the competing congressional bills lies with the redress of violators of genetic privacy. EEOC chair Cari Dominguez noted that the commission has in recent years greatly reduced its case backlog and now takes cases based on priority rather than chronology.
Therefore, victims of genetic discrimination should go through an administrative process before launching lawsuits, she said.
Dominguez added that many people cannot afford to go to court and that the EEOC’s administrative process helps claimants to organize their cases when they have options to sue under multiple torts.