In 2013, actress Angelina Jolie announced that she had a preventive double mastectomy after genetic testing revealed she carries the BRCA gene, putting her at an 87% risk of developing breast cancer and a 50% risk of developing ovarian cancer. The announcement, shared as an essay in The New York Times, sparked a national conversation about genetic testing. Since then, there seem to be daily news reports suggesting the findings of new genetic mutations that may be linked to risk for certain diseases or used for diagnosis of a disease.
We were curious how the populace is feeling about genetic testing—do they see value in knowing the future, or do they find peace in not knowing? To find out, we conducted our own study with 1,006 people in the US to understand what they know about genetic testing and what they think of it—what we learned surprised us.
A Brief Background: The Merits of Testing
Patients and families in many of our other research studies have talked about how they have had testing for a specific genetic mutation in order to make better informed treatment decisions. I recall a recent patient, diagnosed with stage 4 metastatic cancer at a young age, wishing a genetic test would have been available for her. Conversations like this are sobering and humbling.
We also hear people debate the merits of testing, ranging from the financial strain and stress to the demands on time. While some tests are respected for their accuracy, others have less consistent evidence of proven positive outcomes. The debates circle around genetic testing to determine if humans are predisposed to a certain type of cancer (BRCA, for example) to whether a tumor expresses specific biomarkers like EGFR or KRAS (lung cancer mutations) that might be treated differently. So, we started our research there.
Very Few People Understand Genetic Biomarkers
Not surprisingly, only 8% of our respondents say they are very familiar with genetic biomarkers. Over one-third have never heard of genetic biomarkers at all, and almost another third have heard the term but do not know what it means. There is an opportunity here for doctors and genetic testing providers to educate patients about the process and implications. (It is not unlike when the MRI was introduced—the burden of explanation was higher, as was fear of the unknown.)
We also tested awareness of genetic biomarkers by age, and it makes a difference. Though a small group overall (n=52), those aged 25-44 are the most aware, with awareness falling significantly for those younger than 24 and older than 45. We then presented this definition of biomarkers for the respondents:
“Over the past several years, genetic biomarkers have been discovered for a variety of diseases including Alzheimer’s disease, many types of cancers and several rare diseases. Some genetic tests are available today and others are currently in development. These tests could screen patients for some of the specific genetic biomarkers associated with different diseases and identify those at high risk to develop a disease.”
With that definition as a foundation, we were curious about how people would feel regarding two of the most common and devastating diseases we research: cancer and Alzheimer’s.
Cancer & Genetic Testing
The most prolific area of genetic linking is in oncology, with at least 85 studies on genetic testing (of the person or the cancer) shared at the 2015 American Society of Clinical Oncologists Conference. Oncologists we’ve met with speak passionately about the new frontiers being forged in screening, diagnosis and treatment of various cancers. Understanding what people think about genetic testing and biomarkers in cancer was an important part of our study—not only is this of huge interest in the news and in research discussions, but it also touches many of our lives personally.
Seventy-seven percent of respondents agree that genetic testing will be specifically important for treatment and care. Interestingly, when we asked about their own future, respondents are very positive in terms of their willingness to engage personally with genetic testing, especially if it comes at no cost to them. When asked how likely they would be to undergo a non-invasive diagnostic test to determine if they were high risk for developing a particular cancer, 83% indicated they were at least somewhat likely to participate—if it were free. However, when the out-of-pocket price increased to $100, respondents’ willingness to receive a diagnostic test decreased 30%. So for some, $100 is more than they are willing to spend to know the future.
Alzheimer’s Disease & Genetic Testing
Alzheimer’s disease gets significant attention in the press as well, and it is a topic we study often for our clients. At this point, this silent disease has no accessible diagnostic test or cure and is a heavy burden to our aging society, impacting the patients, their families, communities and healthcare professionals.
Forty-nine percent of our respondents have a fairly strong belief that genetic testing will improve care, treatment and outcomes for Alzheimer’s. Interestingly, only 13% of people age 55 and older strongly agree with this statement, which is the lowest of all age groups. Anecdotally, we have heard this group be skeptical in prior research because they have seen many promises in healthcare not come to fruition. Is this low number indicative of that skepticism or something else? Based on what we know of the 55+ age group, the skepticism is likely due, in part, to the lack of current Alzheimer’s treatments and belief that significant treatment progress could not be made in their lifetime. This is the age group that is watching or has watched their parents and other close relatives suffer with Alzheimer’s and has not been able to provide meaningful help to stop the disease.
When it comes to the willingness to undergo a genetic test to determine the likelihood of Alzheimer’s disease, around 80% agree a test has value for them personally—if it’s free. We were surprised by this. One of our hypotheses in support of “knowing” was that it enabled patients and caregivers to prepare and to plan. We expected the numbers to be higher for cancer for at least one reason: there is no cure for Alzheimer’s yet, and many cancers can be cured. Yet willingness drops nearly in half when the out-of-pocket cost reaches $100. Respondents are much less willing to know the future at that price threshold—even more so than for cancer.
No matter the disease, patients want full certainty in the test. Fifty-one percent would only want to undergo the testing if it was 100% certain they would develop the disease. This tells us they aren’t as interested in knowing partial possibilities or in ruling out diseases.
The Verdict on Genetic Testing
What, then, is the prevailing opinion on two of the primary benefits of genetic testing?
- Over three-fourths believe that genetic testing for a biomarker would improve their ability to plan for their futures or to better collaborate with their physician when managing their health.
- When faced with the practical implications of how results could impact themselves and their family, a full third don’t want to know at all if it would cause too much stress.
To be fair, there are many dynamics at play in this conversation that a simple study can’t answer. For example, at least one person on our team has experienced this dilemma firsthand. With a family history of a specific cancer, she knows she is at high risk. At the request of her doctor, she asked a family member (a cancer survivor) to have genetic testing done to help make better decisions. The family member never addressed the question, and so it becomes a point of tension between doctor and patient, patient and family, and within the patient who wants an opportunity to be proactive.
This issue extends outside the patient, family and doctor to insurers as well, with 75% of patients fearing they could be denied life insurance or face health coverage restrictions if a genetic biomarker test is positive for a disease. This concern leads to more questions about how consumers view insurance companies and the impact their fear about future coverage has on healthcare decisions. Perhaps we’ll explore this in our next study.
For now, it appears consumers see genetic testing as a good idea, but, once it is no longer free, no longer 100% accurate or specifically for them, the value decreases.
What do you want to know about consumers and biomarkers? Contact me if you are interested in adding your questions to our next quarterly consumer omnibus.
About the Study
Market Strategies International interviewed a national sample of 1,006 consumers aged 18+ between February 10 to February 19, 2015. Respondents were recruited from the Full Circle Research Co. online panel of US adults and were interviewed online. The data were weighted by age and gender to match the demographics of the US population. Due to its opt-in nature, this online panel (like most others) does not yield a random probability sample of the target population. As such, it is not possible to compute a margin of error or to statistically quantify the accuracy of projections. Market Strategies will supply the exact wording of any survey question upon request.