According to my interpretation of a recent study, there's a gap between providers and the public when it comes to genetic testing. This gap concerns me for providers and the public alike. Let me explain what I mean.
The study looked at about 1,000 individuals who underwent direct to consumer (DTC) genetic testing, which is testing you can obtain without a physician's prescription. According to the study, more than 50% of participants report that the ability to learn their genetic makeup without going through a physician was somewhat or very important. While I am a provider, I'm also a patient. A pretty terrible one at that, so I get it. I don't like going to see my doctor or other healthcare providers any more than the next person. It takes time and in the era of high deductible health plans, it can cost a lot of money.
But here's the kicker: 62% of participants said they intended to share their results with a primary care physician or other healthcare provider, and more than 50% agreed that genetic information should be a part of a standard medical record. If people intend to share their results and believe they should be part of their medical record, why is it so important that testing is accessible without a physician? While several explanations are possible, I think one of them could be that it's simply inconvenient to meet with a healthcare provider. Like I said earlier, it takes time and can cost a lot of money. Additionally, many participants who in the end chose not to share their results with a healthcare provider stated that they didn't feel the results were important enough.
Here's the next issue I see: more than 50% of participants report not understanding at least some of their results. How can you decide whether to share your results or decide that the results aren't important enough to share if you don't fully understand them? What's more, of those who did share their results with a healthcare provider, 18% weren't at all satisfied with the interaction.
So back to the gap I mentioned earlier, which I believe is this: people want to share their genetic test results with their healthcare providers, but we've made it difficult for them to do so. Worse, nearly one in five individuals who does share, doesn't have a very good experience. I believe that the solution is for consumers and providers to meet in the middle. Here's how:
For consumers:
If you intend to learn something about your health and share the results with your provider, you should involve your provider before a test is ordered. The authors of the study state, "Participant responses suggest that the discrepancy between pretest intentions and posttest behaviors may in large part be explained by an initial overestimation of the expected importance or actionability of results." Discussing a test with your provider before it's ordered would help with setting the right expectations for what the results will or won't tell you or how they will or won't help manage your medical care.
For healthcare providers:
If healthcare providers, including genetic counselors, expect to be involved, we need to make it easier for people to meet with us. Maybe it's unrealistic to meet with every person interested in DTC genetic testing when we can't even seem to meet the need for regular primary care, but as the authors of an accompanying editorial suggest, maybe "professional [healthcare] organizations could consider providing educational resources. Such an initiative could offer explanatory materials about DTC genetic testing, as well as other health products that are heavily marketed to consumers."
I also think there's a lot that can be done to improve access to genetic counselors after a test is performed. I don't work for a company that offers direct to consumer testing, but I do work for a company that strives to have what I would consider some of the best access to genetic counselors there is. Individuals who take one of our tests can speak with a genetic counselor over the phone in a matter of minutes. Certainly that might not be possible everywhere, but traditional models of healthcare where an individual makes an appointment, takes a day off of work, drives to the clinic and meets with a provider in person needs to be challenged (and yes, reimbursed) if we expect to meet the increasing needs of society.
Just like the old country song lyrics suggest, there's a lot to gain if we meet in the middle on this issue. So, I'll start walking your way and you start walking mine...