Protection against genetic discrimination: a necessary concern?

With developments in genetic screening, and the increase in employers asking for increasingly invasive access into applicants’ private lives in the US, it should come as no surprise that there is growing concern over allowing companies access to your genetic information.

Genetic testing can be a powerful tool for doctors to look for high-risk genes for diseases like cancer or Huntington’s disease. However, genetic testing is far from 100 per cent accurate at present. It can give results for risk genes that might never present, and there are many diseases which have genetic components that are not well enough understood to make precise predictions about a person’s health.

Genetic discrimination (allowing or refusing services or employment on the basis of genetic test results) is of high concern to many people in North America. A doctor at Toronto’s Hospital for Sick Children, in Canada, has said that when he worked in the US he witnessed parents refuse genetic testing for their children over privacy concerns. These genetic tests, he said, could have offered a better diagnosis and treatment for the children. A doctor at British Columbia’s Children’s Hospital, Canada, reports that many children have been refused health insurance after testing positive in a genetic screen for Sudden Arrhythmia Death Syndrome (SADS). The only current recourse is for doctors to write letters to insurance companies explaining that a positive screening result does not necessarily mean an increased risk of heart problems.

In an anecdotal study of 202 respondents, 39 per cent of people with SADS diagnosis, or family members with the same diagnosis, reported an increase in the cost of their insurance. 60 per cent of people who applied for insurance after the diagnosis reported that they were rejected from coverage.

The US currently has laws against genetic discrimination: The Genetic Information Nondiscrimination Act (GINA). At present, employees are allowed to voluntarily provide this information, but employers are not allowed to coerce or incentivise employees into doing so.

However, this protection is  being threatened by bill HR 1313, which seeks to allow employers to offer employees incentives for disclosing their genetic test results or other medical information. Allowing incentivisation could lead to the ‘something to hide’ mentality, where people are financially punished for keeping their privacy because it is assumed that not disclosing means they have something to hide.

Canada has recently passed a bill through their House of Commons that will offer protection from genetic discrimination for Canadians. Bill S-201 prevents any employer, insurer or business from requiring a person to disclose results or undergo genetic testing as a condition for sale or contract. It prevents the sharing of genetic results without express written consent, with the exception of medical doctors and researchers. Breaking the law carries a harsh penalty of up to one million Canadian Dollars or five years imprisonment.

Bill S-201 adds genetic characteristics to the list of prohibited features for discrimination, alongside race, sexual orientation, and religion.

In the UK, the results of genetic tests are protected by the Equality Act of 2010, restricting employers to only ask about conditions directly relevant to the work. Article 21 of the EU’s Lisbon treaty also prohibits discrimination based on genetic features for employers. However, there is currently only a voluntary moratorium on the insurance industry’s access to such test results which ends in 2019. It is unclear what will happen after this.

Image: John Nakamura Remy via Flikr

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