The Northeast Business Group on Health recently released a new guide, the first of its kind. “Genomic Medicine and Employers: Separating the Hope and the Hype” seeks to educate employers on what’s occurring in this field, and it’s the result of a roundtable of many stakeholders including employers, clinical experts, benefits consultants and genomic vendors.
It was a pretty fascinating read on a topic that will only become more relevant over time. As this report pointed out, a May 2018 Health Affairs report stated that there are some 75,000 genetic tests on the market — such as Illumina, 23andMe, Abbott Molecular Inc. and Blueprint Genetics — with about 10 new tests entering the market daily. Meanwhile, there’s been a large spike in direct-to-consumer advertising. So, even if employers aren’t communicating with their employees about these tests, odds are that these employees are hearing about them somewhere else.
It’s great that a group of people, experts in different sides of this issue, could get together and talk about genomic medicine/genetic testing. [For reference: the term genomic medicine refers to “an emerging medical discipline that uses genomic information about an individual for diagnostic or therapeutic decision making,” according to the National Human Genome Research Institute. Genetic testing refers to a test that “identifies changes or mutations in chromosomes or genes. It can confirm or rule out a suspected genetic condition.” So, in a nutshell, genetic testing informs genomic medicine.]
“All of the genomic medicine topics we covered were fascinating. The innovations taking place in oncology diagnosis and treatment — gene therapy that actually can modify someone’s genes in order to treat or cure cancer, for example — are groundbreaking,” said Candice Sherman, CEO of Northeast Business Group on Health.
One area that she and NEBGH’s members are interested in is mental health. An issue for many employers and employees is when people need to cycle though different depression or anxiety medication before they finally find one that will work, she said. Although there’s still work to be done in this area, the prospect of being able to use genomic testing to identify what a person’s response would be to particular medication is exciting.
The major takeaways of the roundtable are mentioned in the report, but one important topic that the roundtable highlighted was the need for employers to approach health plans and benefit consultants and be “armed with questions about policies, outcomes data and cost when it comes to genomic medicine,” Sherman said.
Digging deeper into the report, it did bring up many solid ideas and questions for employers. Genetic testing benefits and where genetic tests belong in a health plan are not easy concepts to grasp for employers.
A cost-benefit analysis of genomic medicine brought forth some important questions, including:
- “Do tests provide enough meaningful data to make them clinically actionable? Are they specific and sensitive enough? Some vendors lack scientific data to prove their genomic tests have clinical value.”
- “Interpreting the results of gene sequencing is art as well as science. Interpretations can vary, which in turn can generate different treatment paths.”
- “Predictive genomics can help evaluate the risk of a disease developing in an individual. But whether such testing is worthwhile depends on several factors, such as whether the disease has a high genetic correlation and to what extent environmental factors play a role. Environmental and lifestyle factors in conditions like cancer and many chronic diseases can be more significant than a slightly increased predisposition to those conditions.”
There are some very real ethical challenges for employers in the genomic medicine arena, Sherman said. Employers may need to make difficult decisions on what they will and won’t cover. She gave an example of a dependent who has terminal cancer and who discovers a new type of gene therapy that costs hundreds of thousands of dollars. What if an employee were to ask an employer to cover this?
A situation like this would bring up many overwhelming, ethical questions that are in no way easy to answer, said Sherman, such as: Who decides what value to place on extending life by several months? Does it make a difference whether the dependent is young or elderly? What if the initial data is promising, but no long-term data is available?
One last element I found interesting about this roundtable is that I found one important stakeholder to be missing: employees (the patients) or patient advocacy groups. Having any discussion about health care, which is specifically meant to treat patients, should include somebody fully representing the voice of the patient.
Sherman pointed out that privacy concerns would be a hindrance to including patients in a discussion like this. That made sense to me, considering how sensitive individual health data is for patients.
I’d hope employers would have the interests of their employees in mind for any discussion about a topic like this, especially when it comes to genetic privacy and discrimination. As I like to point out any time I write about genetic testing, it is not illegal to discriminate against a person based on results of a genetic test in areas like life insurance. Any employee considering genetic testing for any reason should be aware of that.
I’ve written about this before, and of course seeking genomic tests for cancer treatments is different than doing it just to check for general risk factors, but I think it’s important to stress. I have a good friend this past year who was so enthusiastic about getting a genetic test done, but once I mentioned the life insurance discrimination fact, she did more research to decide if the test was worth it.
Genomic medicine is a truly fascinating topic for anyone looking toward the future of health care delivery, and of course it’s possible to go much deeper on this topic. For the time being, this guide was an interesting source of information for employers beginning to think about where genomic testing belongs in their workplace. I hope you find it valuable as well!
For the time being, here are a couple more articles related to the topic I found in my research, if you’d like to read about this area further:
- “Precision medicine fails for up to 93% of patients. Are its proponents selling ‘false hope’?” (Advisory Board): Related to the hope versus hype aspect of the NEBGH’s report, this article explores the reality of how successful precision medicine based on genetics is, as well as exciting innovations looking forward. I found this to be a very informative, unbiased account that deflects the hype while also acknowledging where there is hope.
- “Seeking Greater Inclusivity In Genomics Research” (Forbes): Most research subjects in genomics are of European descent. This could potentially exclude non-European communities from benefiting from research breakthroughs in this area.