GENEWATCH
 
TOPIC: GENETIC DISCRIMINATION
By Jeremy Gruber
 
First Public Case of Discrimination under GINA

In what appears to be the first publicly identified case of its kind, a Connecticut woman has accused her employer of violating the recently enacted federal Genetic Information Nondiscrimination Act (GINA). 

With a family history of breast cancer, 39-year-old Pamela Fink and her two sisters took genetic tests at the Yale Cancer Center.  The tests showed that all three carried the BRCA2 gene, predisposing them to breast cancer.

Both sisters developed breast cancer, but survived with treatment. After several biopsies and frightening false alarms, Fink opted for a preventative double mastectomy last year. 

Feeling comfortable in what she described as a supportive work environment, she told her bosses at MXenergy about her genetic tests and the surgery, she said.

Fink alleges that, despite giving her "glowing evaluations for years," her employer, MXenergy, soon thereafter "targeted, demoted and eventually dismissed her when she told them of the genetic test results." MXenergy denies any wrongdoing.

GINA, which was passed by Congress in 2008 and took full effect late last year, represents the most comprehensive effort to date to regulate the use of genetic information by employers (Title II) and health care insurers (Title I) in the United States. Under Section 201(a)(i) of GINA, employers with more than 15 employees may not "discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment...because of genetic information."

As with other civil rights laws, Title II requires that a complaint first be filed with the Equal Employment Opportunity Commission. Peggy R. Mastroianni, the commission's associate legal counsel, said most of the 80 complaints filed since the genetic law took effect seemed to involve cases in which employers had improperly acquired or disclosed genetic information. But Ms. Fink's case alleges a more serious offense: an improper firing because of it.

How and if this case proceeds may shed light on how the EEOC and possibly the judiciary will begin to apply GINA.  Regardless, it is an important reminder to employers and health insurers that GINA is now the law of the land.

DNA

Canada Considers Genetic Discrimination Law

Canadians need better protection from genetic discrimination by insurers and employers, according to Winnipeg North MP Judy Wasylycia-Leis. Mrs Wasylycia-Leis recently introduced Bill C-508, "An Act to amend the Canadian Human Rights Act," in the Canadian House of Commons to prohibit discrimination on the grounds of a person's "genetic characteristics."

As other nations have begun to enact such protections, supporters of the new bill claim Canada has fallen behind.  Currently, Canada does have several laws protecting individuals from discrimination on the basis of disability.   However, none of this legislation addresses the concepts of future disability, perceived disability or imputed disability. Nor does it prevent discrimination from taking place; rather, it offers remedies after discrimination has occurred. This puts the onus on the victim of discrimination to make the complaint and then seek appropriate legal action - a lengthy and expensive process.

Over the past two decades, various commissions and task forces have called for reform in Canada but none of their recommendations have been implemented. Meanwhile, the Canadian insurance industry's position continues to be that if an individual has undergone genetic testing, insurers can request access to the results.   Because Canada has a universal health care system, access to life, disability and critical care insurance - rather than health insurance - are the biggest issues at stake.

"This bill will stop Canadians' personal genetic information from being used against them," said Wasylycia-Leis in a press release preceding introduction. "Employers, insurance companies and others have already begun to discriminate against people based on their genetic make-up. People are being punished in fundamental ways-like being prevented from earning a living or buying a house-for something they have no control over. That's unfair and this bill will update the Canadian Human Rights Act to deal with this 21st century problem."

The Canadian Coalition for Genetic Fairness (CCGF) which was modeled after the Coalition for Genetic Fairness in the United States which led the successful effort to enact GINA, helped Mrs Wasylycia-Leis draft the bill. The CCGF wants regulatory reform for the insurance industry in light of genetic advances with particular attention on life, critical care, disability, and mortgage insurance.

Mr. Don Lamont, CEO of the Huntington Society of Canada and chair of the CCGF, says predictive testing is "a good thing," but warned it also carries "a growing fear that the information can lead to stigma and discrimination."

For more information on the Canadian Coalition for Genetic Fairness (CCGF) and how to support their efforts, you can visit their website at:  www.ccgf-cceg.ca/en.

 

Jeremy Gruber, J.D., is President and Executive Director of the Council for Responsible Genetics.

 
 
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