Genetic testing: The next employee benefit?
December 17, 2014
Organizations often look to their benefits for innovative ways to differentiate themselves from others as they compete for talent. A look to recent developments in the very competitive U.S. technology sector had Apple and Facebook covering the cost of the elective cryogenic freezing and storage of eggs for female employees. In response (or retaliation), Google announced that its plan would also include a new benefit for all employees: genetic testing.
Beginning in January, Google’s benefits plan will include coverage for two DNA tests from Foundation Medicine that look specifically for solid tumours, pediatric cancers and blood malignancies, and help oncologists make decisions on chemotherapy regimens based on a patient’s genetic profile. While this addition is specifically focused on cancer and cancer markers, there are certainly murmurings of interest in providing broader spectrum genetic testing as part of a benefits plan.
One of the questions in this year’s Sanofi Canada Healthcare Survey asked “If your plan was to be enhanced by adding services or benefits, which of the following would be your top three choices?” One of the eight options provided (in addition to an “other” option and a “none of the above” option) was “coverage for genetic testing that helps detect risk for inheritable diseases.” This option was chosen by a whopping 35% of survey respondents. Regionally, Atlantic Canadians were most likely to select genetic testing as one of their options, at 42%, followed by respondents from Quebec and Ontario, at 36% each. Manitoba and Saskatchewan respondents were least likely to choose this option, at 24%.
While Canadians have access to genetic testing when it is medically warranted, when there is a family history of a disease with a marked genetic component, like Huntington’s disease or Tay-Sachs, for example, or in the context of prenatal screening, the ability to opt for genetic tests seems to be gaining momentum.
Companies like 23andme recently announced plans to directly target the Canadian market for direct-to-consumer home genetic tests. These tests provide consumers with DNA analysis regarding inherited diseases and traits, drug response and even ancestry information through saliva testing.
The decision to have a genetic test is a complex and highly personal issue. Are workplaces equipped to deal with the potential ramifications of this genre of medical testing?
It’s important to note that a positive genetic test result does not mean with any degree of certainty that a person will absolutely get a specific disease. Rather, a positive test result indicates what might happen. That result could compel a person to change their behaviour to reduce the likelihood that they will get a specific disease, or reduce their risk factors in order to reduce the chances of a disease appearing. Similarly, a negative test result does not mean that a person will never develop a specific condition (with the exception of chromosomal conditions). The majority of diseases and conditions have a complex interplay between genetics, lifestyle and behaviour, and environment that determine whether the disease occurs in a specific individual or not.
Let’s suppose an employee receives a negative result from a genetic test and discovers that he or she has the genetic marker for Parkinson’s disease. Is it the employer’s responsibility to ensure that that employee has sufficient help interpreting the result and understanding what the result means for them? Is that person’s workplace prepared to provide emotional support while they work through what the result means for them? What about the employee’s family? And although most employers have some form of employee and family assistance programs (EFAPs) in place, are EFAPs equipped to deal with this issue?
Beyond the emotional side of genetic testing, there is also the right to privacy and access to information side. Will employees be concerned about their employer having access to their genetic test results?
In Canada, the use of genetic information is protected by the federal Personal Information Protection and Electronic Documents Act and provincial privacy laws, as well as the Canadian Human Rights Act and provincial human rights codes, which prohibit discrimination on the basis of disability, age, sex, race and other grounds. So, under these pieces of legislation, Canadian employers don’t have any rights to access genetic information, or the ability to make employment-related decisions based on a person’s DNA.
Read: Private Matters
Could employee genetic information be used by an insurer as a determining factor in pricing risk? Today, there would be no mechanism for genetic information to be aggregated and provided to insurers for use in pricing group benefits such as drug, extended health, life, critical illness or disability benefits. However, if an employee needed to provide proof of their good health for life or disability coverage beyond the non-evidence maximum, optional or voluntary benefits or as a late applicant, and they have undergone genetic testing, they would be required to disclose that history.
Formally, the Canadian Life and Health Insurance Association has created a position statement indicating that while an insurer is not to require genetic testing as part of an application for insurance, if genetic testing has been undertaken and the information has been made available to a person applying for insurance, an insurer could request access to that information just as they would any other medical information that would speak to the risk posed by an individual.
While Canada has not been so deliberate, some countries are beginning to bring in legislation specific to the collect and use of genetic information. In the United States, the Genetic Information Nondiscrimination Act was enacted federally in 2008. This act specifically prohibits employers from using genetic information as a factor in hiring or other HR actions such as opportunities for promotion, decisions about terminations or layoffs, compensation or work assignments, and also from insurers in using this information to make underwriting decisions.
While most states have also enacted similar legislation, California’s law goes further and prohibits “genetic discrimination” in mortgage lending, housing, public accommodation and education, among others. Several European countries have introduced moratoria on the use of genetic information by insurance companies. In the U.K., for example, the only acceptable use of genetic testing for insurance purposes pertains to Huntington’s disease and the underwriting of individual life insurance policies.
In the near future, genetic testing is likely to be more prevalent as a diagnostic or therapeutic tool, and benefits plans will need to evolve to provide coverage for genetic testing when it’s not covered by public health. However, workplaces will also need to give thoughtful planning to the bigger picture issues genetic testing brings with it.