|Brynne Stainsby was at a high risk for Huntington's Disease but later learned
that she doesn't have the disease.|
An article that appeared earlier this week in Canada’s The Globe and Mail offered a firsthand account of what genetic discrimination looks like:
Brynne Stainsby grew up knowing she had a good chance of being diagnosed with Huntington’s disease one day….she didn’t realize that simply coming from a family with a history of Hungtinton’s disease could disqualify her for life or disability insurance…. “It was just flat-out discrimination and completely out of my control."Luckily for Stainsby, the results of genetic testing showed that she does not possess the trait for Huntington’s. But for many others, genetic tests can trigger a lifetime struggle because in Canada, there is no federal regulation to defend against genetic discrimination, the only G8 country without legal protections.
An expert in Huntington’s disease, Dr. Michael Hayden, has quantified just how common genetic discrimination is. According to The Globe and Mail, Hayden’s study “found 30 per cent of those at risk for the diseases reported discrimination in the form of rejection for insurance, premium increases or demands to undergo genetic testing.”
Not surprisingly, the Canadian Life and Health Insurance Association told The Globe and Mail that they urge against legislation on the grounds that the issue only affects a small portion of people.
In the United States, we are lucky to have the Genetic Information Nondiscrimination Act of 2008 (GINA) to protect against genetic discrimination by employers or health insurers. Yet even GINA is limited, leading some to push for state-specific versions of GINA to extend protection.
Now that we are officially in the midst of the 2012 primaries, The Globe and Mail’s story of what Canadians are facing has timely significance to Americans; the sole dissenting vote against GINA by the House of Representatives was presidential candidate Ron Paul.
At first, this doesn’t seem to make sense – wouldn’t someone obsessed with the government staying out of the people’s business also support the conclusion that one should be able to keep one’s genes to oneself? Paul himself acknowledges the contradiction in his dissent, but then goes on to explain:
Uniform Federal mandates are a clumsy and ineffective way to deal with problems such as employers making hiring decisions on the basis of a potential employee’s genetic profile. Imposing Federal mandates on private businesses merely raises the costs of doing business and thus reduces the employment opportunities for all citizens.
That was essentially Paul's rationale for opposing the Civil Rights Act, which he blames for "destroy[ing] the principle of private property and private choices."
Incomplete as it may be, I feel lucky to have GINA, and I feel for Canadians who do not have similar legislation to protect them. And if Ron Paul does gain the Republican nomination, the protection of GINA will be something for all of us concerned with genetic privacy rights to keep in mind.
Previously on Biopolitical Times:
Posted in Biopolitics, Parties & Pundits, Biotech & Pharma, Disability, Emily Beitiks' Blog Posts , Human Rights, Sequencing & Genomics, US Federal
CommentsAdd a Comment