skip to main content

Senate, House Committees Examine Genetic Discrimination

Senate Committee Approves Bill Prohibiting Genetic Discrimination

On January 31, the Senate Health, Education, Labor and Pensions Committee approved, 19-2, the Genetic Information Nondiscrimination Act (S. 358) after adopting a substitute amendment by Chair Edward Kennedy (D-MA) that made technical corrections. The Senate approved similar legislation in 2005, but the House did not act on the bill before the end of the 109th Congress (see The Source, 2/18/05).

Sponsored by Sen. Olympia Snowe (R-ME), the measure would prohibit insurance companies and employers from using the results of genetic tests to deny coverage, raise insurance premiums, or to make hiring decisions. The measure also would bar insurance companies and employers from requesting genetic tests and would apply the same procedures and civil remedies as other forms of discrimination, including race and sex (both under the 1964 Civil Rights Act, P.L. 88-352), disability (under the Americans with Disabilities Act of 1990, P.L. 101-336), or age (under the Age Discrimination in Employment Act of 1967, P.L. 90-202).

In a press release, Sen. Snowe said, “Genetic testing offers millions of Americans the opportunity to utilize cutting-edge scientific technology to prevent disease. This legislation ensures that individuals who take advantage of that opportunity do not risk discrimination by health insurers based on their genetic information. I am proud to once again join my colleague, Senator Kennedy, to offer this fair, carefully-crafted, bipartisan bill, and commend him for his leadership and tenacity on this vital issue. I urge the Senate to take quick action on this bill and the House of Representatives to give it careful consideration.”

Sen. Kennedy stated, “In this century of the life sciences, much of what we learn through biomedical research is being translated into new treatments and cures, and nowhere is the explosion of scientific progress more apparent than in the field of genetics…In the absence of federal protections, however, patients fear that undergoing genetic tests may lead to disqualification from future insurance coverage, or that an employer will fire them or deny a promotion based on the results of a genetic test…If Congress enacts clear protections against genetic discrimination in employment and health insurance, all Americans will be able to enjoy the benefits of genetic research, free from the fear that their personal genetic information will be misused. If Congress fails to make sure that genetic information is used only for legitimate purposes, we may well squander the vast potential of genetic research to improve the nation’s health.”

Ranking Member Mike Enzi (R-WY) said, “The ‘Genetic Information Nondiscrimination Act’ will help fulfill the promise of genetic research to save lives and reduce health care costs, by establishing basic protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies, without the fear that this information will be misused or abused… As a former small businessman, I am sensitive to the concerns raised by some in the business community that this legislation might impose new liabilities on employers. However, I am confident that when critics become familiar with the provisions of this bill, they will see that, in fact, it protects both employees and employers by setting a standard of conduct that is easy to understand and easy to follow. We are far better off setting uniform, consistent rules of the road clearly and up front, rather than allowing them to be set piecemeal through litigation.”

House Subcommittee Holds Hearing on Genetics and Employment Discrimination

On January 30, the House Education and Labor Subcommittee on Health, Employment, Labor and Pensions held a hearing on protecting workers from employment discrimination based on their genetic predisposition to a disease. The subcommittee also focused its attention on a bill (H.R. 493) sponsored by Reps. Louise M. Slaughter (D-NY) and Judy Biggert (R-IL) that would prohibit such discrimination. The bill would prohibit insurers from denying coverage or charging higher premiums based solely on an individual’s genetic information. It also would prohibit employers from considering an individual’s genetic information when hiring, firing, or promoting an employee.

Rep. Slaughter said, “In the 12 years since I first introduced genetic nondiscrimination legislation, the need for it has grown exponentially. Scientific research has advanced so quickly that we cannot afford to wait any longer. What we need is a way to preserve Americans’ health and protect our nation’s scientific edge, all while defending the privacy of our citizens.” She told the committee that “there are over 15,500 recognized genetic disorders affecting 13 million Americans” and that “there are genetic tests for over 1,000 diseases, and several hundred more under development.” Rep. Slaughter described some cases of genetic discrimination, including the denial of jobs to African Americans believed to have sickle cell disease and the termination of a social worker because her employer feared she would develop Huntington’s Disease, a progressive and untreatable neurological disorder. These cases, she said, are why many Americans will not submit to a genetic test they are fearful of losing their job or their health insurance. She urged the House to pass the measure, saying, “Congressional action on genetic discrimination is necessary and long overdue.”

Rep. Biggert focused her testimony on the cost savings that genetic testing may afford businesses and families: “For example, the breast cancer drug Iressa costs $25,000 a year, but there is a simple genetic test that will predict whether or not this drug will be successful, thereby sparing false hope and saving precious time and money.” She acknowledged the concern of the business community that the bill would result in “frivolous and costly lawsuits.” To that concern, Rep. Biggert said, “Genetic discrimination isn’t like race, age, or sex discrimination; it’s not apparent…In order for an employer to be liable under this act, he or she would have to intentionally and deliberately go looking for genetic information and then use it against an employee.” Rep. Biggert also said that the current version of the bill “caps damages under existing Title VII [of the Civil Rights Act of 1964] standards” between $50,000 and $300,000, depending on the size of the employer. She concluded her remarks, saying, “We will never unlock the great promise of the Human Genome Project if Americans are too paranoid to undergo genetic testing. Without the protections offered by H.R. 493, these fears will persist, research at NIH [National Institutes of Health] will slow, and Americans and American businesses will never realize the benefits and savings of gene-based medicines.”

Underscoring the need for legislation to prohibit genetic discrimination, Karen Rothenberg, director of the Law & Health Care program at University of Maryland School of Law, shared recent polling data. She told the subcommittee that “fear of genetic discrimination is widespread…A 2006 survey by Cogent Research showed that 72 percent of respondents agreed the government should establish laws and regulations to protect the privacy of genetic information.” A 2003 NIH study of families at risk for colorectal cancer found that the foremost concern of participants was “losing their health insurance should the knowledge of their genetic test result be divulged or fall into the ‘wrong hands’.” Ms. Rothenberg told the subcommittee that “some might argue that there is no need for legislation,” because there is currently little evidence of widespread discrimination. She explained that the low level of discrimination was due to low levels of genetic testing and individuals being unaware of the reason for negative employment decisions. She further stated that individuals genetically predisposed to a medical condition “may be averse to risking loss of privacy for themselves and their families by going public with a discrimination claim,” and many cases are settled or resolved at trial court and never reported. Finally, Ms. Rothenberg stressed that while federal anti-discrimination laws provide some protection, there are “loopholes and gaps in coverage.”

David Escher, a former employee of the Burlington-Northern Santa Fe Railroad, was diagnosed with carpal tunnel syndrome. A visit to a medical specialist revealed that he would need surgery to correct the condition; when a company medical case manager demanded he undergo more testing, he complied out fear that doing otherwise would result in disciplinary action. Only later did Mr. Escher learn that the additional tests were genetic. “I had just been used as a laboratory rat in a carefully devised scheme where my employer would benefit greatly by trying to prove that carpal tunnel syndrome was a genetic disorder rather than a work environment related condition,” he said. “We have laws to protect us from people wire tapping our phone, stealing our mail, and defrauding our bank account. How can we allow employers to steal the blood of their employees and use it to discriminate?” he asked the subcommittee.

Burton Fishman, counsel to the Genetic Information Nondiscrimination in Employment Coalition (GINE), said that while his organization supports genetic nondiscrimination and confidentiality, it has concerns about H.R. 493. He acknowledged the fears of employees, but said that a case such as Mr. Escher’s is an “unusual and unrepeated event, one that should not serve as the basis for sweeping legislation.” The bill “would not create a single federal standard, but unfortunately would allow a patchwork of state standards to impose inconsistent requirements…If Congress enacts legislation barring employment discrimination based on genetic information, then it should include a safe harbor providing that employers in compliance with the federal standards cannot be held liable under state or local laws banning such discrimination,” he said. Mr. Fishman said that the GINE Coalition “believes that any federal legislation prohibiting genetic discrimination in employment should focus on controlling discriminatory conduct, not the flow of information…such legislation should not be so broadly constructed as to encourage frivolous litigation.”

Harriet Pearson, vice president and chief privacy officer at IBM, also testified.

The Spring 2023 internship applications are now open!Apply Now!