Even when given the option of free or low-cost genetic testing, there are some who have consciously decided against it out of fear that the results could lead to discrimination from insurance companies or employers.
Are such fears warranted?
According to Noah Kauff, a geneticist at the Memorial Sloan-Kettering Cancer Center, they are not.
Of the more than 100,000 individuals who have been tested for the BRAC 1 and BRAC 2 breast cancer mutations nationwide, he said that “there is not a single well-documented case of discrimination occurring in health insurance or employment.”
Elsa Reich, professor of pediatrics for the clinical care of patients in the human genetics program at the New York University School of Medicine, argued that testing is ultimately in the insurance industry’s interests.
“Surveillance,” she said, “is usually less costly than paying for the surgery, chemo, etc., for an affected patient.”
Others in the medical community, however, aren’t so sure that discrimination isn’t taking place. Sharon Moalem studies genetic risk factors in Alzheimer’s disease at the Mount Sinai School of Medicine. In a book published earlier this year, Moalem discusses the link between hemochromatosis — a buildup of iron in the body — and Alzheimer’s. Moalem said that after his book’s publication, many with the gene for hemochromatosis wrote to him saying that they had been victims of discrimination.
“They received a letter from the insurance company, saying, ‘You’re at greater risk and we’re increasing your premium,’” Moalem said.
Moalem illustrated his point further by using smoking as an example, saying that if one were to apply for insurance and check off the box indicating that one smokes, “it wouldn’t be a big surprise [if] the insurance company would include that as part of their calculation of how much to charge you.”
According to Moalem, some who are being discriminated against may be afraid of coming forward.
“Most people don’t want to talk about this, because they don’t want to out themselves as having these risk factors,” he said.
The Genetic Information Nondiscrimination Act, a bill that was passed by the House but has yet to wind its way though the Senate, would help put the issue to rest, making it illegal for health insurers to deny coverage or to charge a higher rate or premium to those who are found to have a potential genetic condition or predisposition toward a disease. It would also make it illegal for employers to use a worker’s genetic information when making hiring or firing decisions.
The act should ease the minds of those considering testing, including Ashkenazic Jews who are at an increased risk for breast and ovarian cancer, and for other diseases such as Tay-Sachs.
Adi Bar-Lev, a certified genetic counselor, points out that the knowledge of the predispositions should be viewed as a positive thing — that it can even be liberating for those people who are walking around with the suspicion that they are carriers.
“We know so much more about these risks, and we have more confidence in managing and dealing with them,” Bar-Lev said.
“I have all these Jewish friends who say: ‘Ashkenazi Jews. Why do we have all these diseases? It really sucks.’ It actually doesn’t suck,” Bar-Lev said. “We have a lot of Ashkenazi Jewish scientists who are looking into a lot of Ashkenazi Jewish genes, and we have a heck of a lot more information at our disposal.”
This story "Can Testing Ever Be a Mistake?" was written by Karen Iris Tucker.