The Genetic Discrimination Crisis

Posted By Jennyfer Pelletier

What is genetic discrimination?

Canadians are at risk of facing genetic discrimination. This type of discrimination occurs when an individual is treated unfairly due to differences in their genetic information. Genetic sequencing tests can be used to identify genetic mutations in an individual’s DNA that are associated with diseases including “prostate cancer, certain breast and ovarian cancers, kidney diseases, Huntington’s ALS and cystic fibrosis“. The genetic information obtained from these tests is beneficial as it can open up the possibility for treatment and even prevent the emergence of diseases in the first place. It is important to note that a mutation does not mean someone will necessarily develop a certain disease; it often only indicates a higher risk of developing that disease.

Genetic discrimination tends to arise in insurance and employment contexts where a person may unjustly be refused employment or insurance based on the faulty assumption that they will actually develop the disease. Genetic sequencing tests are becoming increasingly accessible and are often recommended by doctors when family members have been diagnosed with a disease linked to genetic mutations. However, Many Canadians opt not to have genetic tests “for fear that the results will impact their insurability or their present or future employability“. Consequently, they do not have the information necessary to take any available preventative steps. Some conditions, such as Hemochromatosis, can be easily treated. Unfortunately, 80 percent of those affected are unaware and many who are tested and diagnosed are denied insurance.

Fears of genetic discrimination are not unfounded. Indeed, instances of genetic discrimination have been documented in Canada and are continuing to grow. Teresa Quick’s story is just one example. At 27 years old, Teresa opted for genetic testing for the BRCA 1 gene mutation because both her mother and grandmother died from cancer. A mutation in this gene would indicate a higher chance of developing breast or ovarian cancer. Teresa tested positive for the mutation and opted for a preventive double mastectomy to greatly reduce her chances of developing the disease (Angelina Jolie also famously underwent this procedure after testing positive for the BRCA 1 gene, and reduced her chances of developing breast cancer from 87 to under 5 percent). When Teresa applied for critical illness insurance to cover her mortgage in case she fell ill, the insurance provider denied coverage due to her family history with cancer. A genetic counsellor commenting on Teresa’s situation explained that it is not uncommon for applicants with a history of certain cancers linked to mutations, like the BRCA gene, to be denied insurance.

In the employment context, genetic discrimination may interfere with someone’s employment or promotion prospects, or result in the termination of their job. For example, a 24-year old man was fired from his job after his boss found out he had tested positive for the Huntington’s gene even though the disease usually manifests itself during middle age or even later.

Genetic discrimination is also causing controversy in other circumstances. For example, in 2012, a boy in California had to leave school, a few weeks into sixth grade, because of his DNA test results. Colman had genetic markers for cystic fibrosis. Children with this disease cannot be in proximity of each other, as they are more vulnerable to infections. Since two siblings with cystic fibrosis already attended the school, Colman was forced to leave even though he did not actually suffer from the disease. His parents filed a claim against the school district alleging genetic discrimination.

In Canada, there have also been examples of genetic discrimination with regards to adoption and child custody.

Is your genetic information protected?

In 2008, the United States adopted the Genetic Information Non-discrimination Act (GINA), a federal law meant to prevent genetic discrimination by health insurers and employers. However, the Act does not include life insurance, disability insurance, or long-term care insurance. Furthermore, the law does not protect people from genetic discrimination where an employer has fewer than 15 employees. GINA also does not alter the provision of the Americans with Disabilities Act, “under which an employer, after a conditional offer of employment, lawfully requires an individual to sign an authorization to disclose all of his or her health records“. Since there is no practical way to separate genetic and non-genetic information in health records, it is likely that many employers will receive genetic information. Due to its shortcomings, it is unclear whether GINA will assuage fears of discrimination.

In Canada, on the other hand, there are no existing legislative provisions specifically prohibiting genetic discrimination. Hence, any third party who obtains access to someone’s genetic test results may use it against them. When the Global Genome Project began, Canada took a “wait and see” approach to the potential need to safeguard genetic information. Twenty-five years later, Canada is the only G7 nation that has yet to protect genetic information. However, Bill S-201, An Act to prohibit and prevent genetic discrimination, has recently reached a second reading in the Senate.

This bill intends to create a new Genetic Non-Discrimination Act that would “prohibit anyone from requiring someone to take a genetic test or to disclose the results of a genetic test”. Furthermore, it would prohibit the use of genetic test results as a condition to provide services or enter into a contract with someone. Although there were concerns that the legislation would be unconstitutional by infringing on provincial powers, Legislature relies on the federal criminal power and aims to prohibit misconduct. Insurers have argued that Bill S-201 would make their business model unviable. However, research commissioned by the Office of the Privacy Commissioner of Canada concluded that prohibiting the use of genetic information “would not lead to a significant economic impact on the industry“. The Bill would also amend the Canada Labour Code, the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act. A contravention of this Act would constitute a criminal offence with severe penalties, including a $1-million dollar fine and up to five years of imprisonment. Overall, this Bill seems to implement broader protection that fills many of the gaps in the United State’s legislation.

Conclusion

Genetic discrimination is a real obstacle to increasing the well-being of Canadians. According to Dr. Ronald Cohn, a senior scientist at the Hospital for Sick Children, “33 per cent of families refused to participate in a study that could have life changing diagnostic implications for their seriously ill children, citing genetic discrimination“. Hence, it is important for Canada to enact legislation that will properly protect its population from genetic discrimination in all contexts so that it may benefit from advancements in genetic testing and medicine.

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