Who Has the Right to See Your Genetic Code?

via Victor

Wednesday 8th March was a big day for workplace genetic testing laws in both Canada and the USA, for completely opposite reasons. North of the border, we saw the Canadian Parliament’s House of Commons pass the Genetic Non-Discrimination Act (officially known as S-201) to prohibit employer-enforced genetic testing, whereas a House committee in Washington DC approved a bill to enable companies to inflict financial penalties on employees who did not submit to the tests.

In Canada, S-201 was passed by a 222-60 vote, although minor technical changes to the law mean that it still has to be passed by the Senate before it becomes binding legislation. If it is passed, it will protect individuals from being forced to undergo testing or to disclose their results against their will. It would also prevent employers from being able to discriminate against employees who refuse to take the tests and amends Canada’s Human Rights Act to place a blanket ban on genetics-based discrimination.

Multiple organisations have spoken up about the news. The American Society of Human Genetics (ASHG) have been very vocal in their support of S-201. The President of ASHG, Nancy J. Cox, Ph.D., said, “At a time when genetic testing is increasingly being incorporated into clinical care and researchers are performing analyses of human genomes on an unprecedented scale, it is critical that the genetic information of patients and research participants alike is not misused. If approved by the Parliament of Canada, S-201 will help ensure that all Canadians can benefit from genetics-based clinical advances without fear of genetic discrimination.”

Derek Scholes, Ph.D., Director of Science Policy for ASHG, also spoke up in support of the law. “Passage of S-201 will help ensure not only that an individual’s genetic information remains private, but also that this information cannot be used in a way that harms them,” he said. “Such protections will reassure the public that they can participate in genetic research or undergo a genetic test without worrying that the findings will be used to discriminate against them.”

This isn’t the first time ASHG have involved themselves in discussions about the protection of an individual’s genomic information. In the USA, the Society spent 13 years advocating for similar legislation that was eventually passed as the Genetic Non-Discrimination Act (GINA) in 2008, but this victory may be under threat.

In a vote that had all 22 Republicans in approval and all 17 Democrats in opposition, a House committee passed a bill on Wednesday that could undermine GINA’s ability to protect the genetic data of employees. The bill would allow companies to force their employees to undergo genomic testing or subject themselves to reduced pay, fines, or inflated insurance premiums. Such behaviour is currently prohibited by GINA, but the new bill has been able to get around the previous law by arguing that GINA doesn’t apply to ‘workplace wellness’ programmes.

These programmes are typically used to encourage staff to participate in workout regimes, healthy eating schemes, or regular cholesterol check-ups, among other things. They are theoretically voluntary schemes, but companies are not prohibited from charging employees high health insurance premiums or docking their pay if they refuse to take part. GINA has previously prevented genetic testing from becoming part of these programmes but the new bill could change that.

Main advocates for the bill, such as the American Benefits Council, have argued that the legislation surrounding workplace wellness programmes is too unclear through a combination of GINA and the Americans with Disability Act, passed in 1990.

However, there has also been substantial opposition to the bill with ASHG at the forefront. Dr. Cox wrote a letter to the US House Committee on Education and the Workforce, saying, “If enacted, this legislation would undermine fundamentally the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). It would allow employers to ask employees invasive questions about their and their families’ health, as well as genetic tests they and their families have undergone. It would further allow employers to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees into providing their health and genetic information.”

Privacy has been a big concern for the new bill. Workplace wellness programmes are commonly managed by external companies who would have access to both the names of employees and their genomic data, in a system that is largely unregulated at the present time. Even within the companies themselves, while an employer would only receive de-identified data, in smaller organisations it could be relatively easy to match an employee to their data.

Another concern is the motivation behind the bill. Multiple studies carried out by external researchers have shown that wellness programmes commonly don’t promote good health within the workforce, but they remain popular with employers nonetheless. Some people have argued that this may be because the programmes offer companies an avenue with which to financially penalise employees.

Neither bill has yet been brought into law, but the current, information-rich climate has meant that a lot of interest about genomic data has arisen. With large conferences like ACMG coming up in the near future, it’s likely that protection and distribution of genomic data will be a well-worn topic of conversation for both sides of the argument.

ASHG, for one, have made their position clear. “As an international society that represents genetics professionals in many countries, we recognize the need for protections against genetic discrimination worldwide, and we welcome the establishment of such protections in Canada,” said Dr. Cox.

More on these topics