“Only a Few Consumers Have Used Direct-to-Consumer Genetic Testing So Far”

Direct-to-consumer (DTC) genetic testing provides consumers access to their genetic information without the need for approval from healthcare providers or health insurance companies. How familiar are consumers with over-the-counter genetic tests? What are the key barriers to using them? Where does growth potential lie? We asked Michael Keller and Clarita Simon about their recent study results.

Michael, could you please explain briefly what your study was about?
Michael Keller: Sure. We carried out an international online survey on consumers’ knowledge and perceptions of direct-to-consumer genetic testing. We focused on overall awareness, willingness to adopt and pay, and perceived barriers.

Before we take a closer look at the results, could you explain which types of DTC genetic testing you took into account?
Clarita Simon: There are four main types of genetic tests: Ancestry and relationship testing provides information about a person’s genetic history by cross-referencing their DNA with an existing DNA bank. Predictive testing identifies genetic mutations before they actually manifest, including breast cancer, diabetes, thyroid disease, and arthritis.

Michael Keller: Carrier testing determines whether a person is a carrier for a specific autosomal recessive disease; over 200 genetic mutations can be detected. Nutrigenomics testing investigates the relationship between patients’ genome, nutrition, and health, helping create personalized fitness or nutritional plans.

Does the broader public know about direct-to-consumer genetic testing?
Michael Keller: Our study actually revealed that DTC genetic testing is well known among consumers; 86 percent of respondents had heard about it before, with ancestry and relationship testing being the best known and nutrigenomic testing the least well known test types.

How do customers generally learn about these tests?
Clarita Simon: Consumers mostly become aware of the tests through friends, online articles, or online advertisements. Only six percent learned about DNA self-tests from their physician. However, a huge majority of 75 percent of respondents says their physician’s recommendation is a crucial factor in their buying decision, so there is obviously room for improvement.

So, patients prefer to take the tests under the supervision of their physician?
Michael Keller: No, surprisingly that isn’t the case. Physicians aren’t usually expected to be involved in the final test engagement. 36 percent of respondents wish to buy the kit online, receive and take the test at their residence, and ship it back to the lab themselves. In other words, users prefer the interaction with DTC genetic tests to be as simple as possible.

Since over-the-counter genetic tests are well known, is this reflected in actual purchasing behavior?
Michael Keller: Only a few respondents have actually purchased a DTC genetic test before, although 50 percent would like to try it – if cost wasn’t an issue. Predictive tests for the early diagnosis of diseases would be the number one choice. However, not purchasing a test isn’t only a question of costs. We also investigated other adoption barriers, namely, data privacy concerns; ethical concerns; psychological and physiological impact; and transparency, validity and/or accuracy. Surprisingly, ethical concerns, such as those regarding newborn screening, are not an obstacle for the majority of respondents. The importance of each of the other barriers depends on the type of test.

You mean the survey results vary between the four tests?
Clarita Simon: Right, in regard to barriers, we actually see some interesting differences. With ancestry and relationship testing, consumers mainly worry about data privacy and sharing. The biggest barrier for predictive testing is the psychological and physiological impact of test results, as well as the transparency, validity and/or accuracy. The latter is also the greatest obstacle for carrier testing, while for nutrigenomic testing, the high price tag is biggest barrier.

Talking about high prices, what price would consumers consider appropriate?
Michael Keller: There are significant differences between what price respondents consider “good value for money”. It strongly depends on test type and region. Overall, the study shows that consumers’ willingness to pay varies around a low three-digit value, if they have to pay for it entirely out of pocket.

One final question, where do you see most growth potential?
Clarita Simon: For many consumers, data privacy is an important topic, so building up trust in this area is key to growing the DTC genetic testing market. And of course, to make DTC genetic testing more attractive, the whole procedure should be as easy as possible, and consumers should be able to complete the process independently.

Michael Keller: As our study results suggest, another important driver for the future growth of direct-to-consumer genetic testing will be to leverage the influence of physicians – a physician’s advice could be important in overcoming key barriers, particularly in regard to concerns about accuracy and validity.

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