In the wake of a new era of genomics and genetic testing, we are all experiencing the benefits of what was once a distant dream: ancestral mapping, genetic engineering and personalized medicine.
However, genetic testing also brings novel ethical and legal concerns, among the most notorious, genetic discrimination. Being discriminated against based on genetic characteristics is a new and growing issue. Consumers who have undergone genetic testing or have a genetic predisposition to certain illnesses may be discriminated against by insurers, employers and even the government, unbeknownst to them.
States and international organizations have begun instituting laws and regulations to prevent such discrimination in recent decades, such as UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997), The Genetic Information Nondiscrimination Act of 2008 (GINA) in the U.S. and Canada’s Genetic Non-Discrimination Act (2017).
Canada’s genetic discrimination expert, McGill University’s Yann Joly, Ph.D. (DCL), FCAHS, Ad.E. sat down with Top Class Actions to discuss this pervasive issue, including, what Canadian’s can do to protect their genetic information and whether genetic testing is risky business.
Genetic Discrimination Definition
If there is anyone who can explain genetic discrimination to Canadians, it’s Yann Joly. He is the Research Director of the Centre of Genomics and Policy, and is an Associate Professor at the Faculty of Medicine, Department of Human Genetics at McGill University.
Among his numerous accomplishments and titles, Yann Joly is a member of the Canadian Commission for UNESCO (CCU) Sectoral Commission for Natural, Social and Human Sciences, and is the current Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC), and Co-Lead to the regulatory and ethics work stream of the Global Alliance for Genomics and Health (GA4GH).
Yann Joly is the lead investigator of the first international Genetic Discrimination Observatory (GDO), and published numerous academic and research articles on genetic discrimination.
According to the genomics expert, defining genetic discrimination is not an easy task. “Discrimination is such a loaded term,” he explain. “[It] can have many meanings, depending on where you stand. If you’re a person who is being discriminated against- then it has a negative connotation.”
In the above situation, Yann Joly points out that genetic discrimination will refer to differential treatment based on illicit grounds, in this case, genetics.
“But if you’re a scientist or an insurer, you classify people in different categories,” he counters, and this is not necessarily a bad thing.
For example insurers categorize potential insureds based on actuarial factors, “which refer to information known about someone’s health that tells you if they are at a high risk of dying earlier.”
Likewise, scientists need to categorize people based on genetics to help determine how certain medications will work on patients, in the case of personalized medicine.
Genetic Testing Breast Cancer and BRCA1
McGill University’s Yann Joly illustrates a common example of genetic discrimination that may have occurred to you or someone you know.
“A woman who tested positive for the BRCA1 gene, and is therefore more likely to develop breast or ovarian cancer earlier than the average population, could be denied life insurance due to her higher risk of illness and death,” he explains.
Although Canadians and Americans are now protected against such discriminatory practices, notes Joly, before such protections were instituted and in countries that have not yet enacted genetic discrimination prohibitions, insurance companies would either ask for genetic test results or would require someone to undergo a genetic test before purchasing insurance.
According to the McGill University professor and research director, this approach is wrong in two ways. Firstly, there is a moral dilemma at issue: “You’ve already had bad news, so you don’t need, on top of that, to be rejected from insurance,” he explains. Next, this approach is also scientifically flawed. “Having a BRCA1 gene is not a death sentence at 45. There are many things to do to reduce your risk of illness, such as exams, more checkups and surgery.”
Genetic Testing and Genetic Discrimination in Canada
Although genetic discrimination is a hot topic in Canada and around the world, McGill University’s Yann Joly notes that there is little concrete evidence that genetic discrimination is a widespread issue in the country.
“There is some evidence of discrimination in the context of Huntington’s disease,” he says referencing a 2009 study conducted by Yvonne Bombard. “Everything else is a big question mark.”
Joly points out that Canada’s Genetic Non-Discrimination Act was chiefly developed to protect individuals who tested positive for certain genetic conditions, and these are “monogenic rare genetic disorders, like Huntington’s, hereditary breast and ovarian cancer (BRACA1) and hemochromatosis. These conditions are protected because they are easy to discriminate against.”
Additionally, the Act applies specifically in the context of private contracts, such as insurance or employment contracts. Therefore, Joly claims that Canada’s genetic discrimination law would be “ineffective” to prevent discrimination in other contexts and for other disorders.
A big loophole, he highlights, is state intervention, such as immigration. “There is incidental evidence that immigrants have been requested to provide genetic information in the immigration context. They are not protected.”
Privacy Risks: Genetic Tests, Ancestry DNA Testing, 23andMe
Home DNA tests and ancestry tests, such as Ancestry.com and 23andMe have gained a lot of popularity in recent years. Joly warns that private genetic tests carry a higher risk of privacy breaches or genetic discrimination than those conducted in a medical setting.
“When you decide to take a private genetic test, like those that are sold online, it’s all about risk. If you decide to take a genetic test in the public system the risk [that] the information will be used for discriminatory purposes is very low.”
For example, U.S. investigators were able to use the online genetic testing platform GEDmatch, to trace the DNA of the Golden State Killer, due to the open availability of genetic information online.
Nevertheless, the genomics and policy expert remains confident that regardless of the type of genetic test undergone, the overall risk remains fairly low. His advice, “be very careful to read the contract, so you know what you’re getting into.”
Therapeutic genetic tests, such as genetic testing for breast cancer, is a different ball game, he notes. “First of all, this is for your own health. If you’re given the advice by your doctor […] it’s for therapeutic purposes. You should take the test.”
Yann Joly employs a risk- benefit analysis for genetic testing. Often, the benefit outweighs potential harms.
Additionally, according to the genomics and policy expert, there is a link between privacy protection more generally and the protection of genetic information: “Where our privacy would be protected at an ideal level, we would not have to worry about genetic discrimination. But as we know, today, perfect privacy does not exist.”
Discrimination, Law Enforcement and Intersectionality
According to Joly, genetic discrimination is intimately related to intersectionality, which is defined as the interconnected nature of social categorizations such as race, class and gender.
“It’s always the same people that are discriminated against in a variety of circumstances. Genetics can be used to exacerbate other kinds of discrimination,” explains the McGill University professor.
“For example, today we are using genetic information more and more for crime scene investigations. It’s great when it works, and it works a lot of times. DNA is a unique identifier, so it can tell you if someone was at the scene of a crime […] But here is the problem,” warns Joly, “in countries and states that have large DNA databases […], hundreds of thousands of individuals’ DNA are stored for forensic purposes, and certain populations are overrepresented in those databases.”
We can think of visible minorities or young males, he points out, underscoring that both populations are overrepresented in forensic DNA databases. “So it creates bias because it means that the DNA that you have to look at and to match only represents a small minority of the population.”
Family History of Disease Still Unprotected
Although Canada’s Genetic Non-Discrimination Act protects certain forms of genetic information, it leaves a gaping regulatory hole in terms of family history of disease.
“If you know there is a history of breast cancer in your family, you still have to reveal this information to your insurer because it is not a test result, but it is genetic information.” This issues arises where individuals have not undergone genetic testing, but know about a family history of disease, which is a form of genetic information that is not protected in Canada’s genetic discrimination law.
Although family history of disease is not protected, the genomics and policy expert agrees that Canada’s Genetic Non-Discrimination Act is a first step in the right direction.
“The future is heading toward a place where genetic tests are more and more accurate. As other medical predictive tests become better and better, we need to be on the lookout that these tests will be used for the benefit of the population and not to exclude certain populations from social life and other spheres [due to genetic discrimination].”
Joly offers this advice to Canadians who have undergone or will undergo genetic testing: “Treat your genetic information like other health information. Be proactive. Be on the lookout for people, such as an employer, asking for such information and ask why. Know if it’s legal. Read the terms of your contract and don’t share more than you need to.”
Are you considering undergoing a genetic test? Are you worried about genetic discrimination? Share your thoughts with us in the comments below!
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