The State Of Genetic Testing 2020
Genetic testing has boomed in recent years. Anyone can go online and order an at-home test kit, resulting in millions of people adding their genetic information to ancestral databases. Costs for testing have made testing more accessible, and companies like Ancestry.com and 23andMe have made it into a cultural conversation.
Beyond the hype, the substantial promise of genetic testing is that it provides insights into an individual’s unique genetic code, so that they can make changes to their life for the better. But this promise has largely fallen short, and the benefits that genetic testing offers have not been taken advantage of.
But is that based on faulty science or distrustful results? Or has genetic testing not realized its full potential because consumers and practitioners themselves are unaware of its full range of benefits? Despite more accurate results and evolving, reliable science, genetic testing is still seen as somewhat of a novelty by the majority of the population.
STATE OF GENETIC TESTING
We wanted to better understand the state of consumer genetic testing in the US, and to gain more insights into why people take genetic tests, what they hope to get out of them, and if they thought their results were useful and actionable. On October 12, 2020, we surveyed 600 US consumers who had previously taken a genetic test to learn more about their experiences.
What we found was a mix of responses, but a few things became clear:
- Our respondents were split down the middle on their intentions for the test: Finding out more about their ancestry or discovering something about their personal health.
- 43% took the test out of curiosity.
- A majority of respondents felt the test helped them achieve their goal, the results were easy to understand, and the results were useful.
- The majority of respondents (58%) didn’t make any day-to-day changes based on their results.
- Respondents wanted to see more actionable insights, more education, and more personalized recommendations to give them guidance on what to do with the results.
- Some called the test’s accuracy into question.
Overall, the survey showed us that while some people are finding useful insights from their test and taking action to improve their health and lifestyle choices, many are just finding it data for data’s sake — and the majority of people taking genetic tests are taking them for curiosity, and missing the opportunity to use it as a means towards making major life changes.
Genetic testing was of interest to all ages, as we learned through our survey, where respondents ranged in age from 18-54+. But there was one age range that accounted for 68% of our respondents: 25-44, right in the prime of life. Only 23% who took a genetic test were older, and only 9% were young. Of our respondents, 58% were female.
HOW DID YOU TAKE IT?
Given the number of at-home test kits available today, it’s no surprise that three-quarters of our respondents took the test at home, independent of any health professional oversight. 23% took the test with some kind of health professional oversight, whether it be a doctor, dietician, naturopath, or nurse practitioner.
WHAT TYPE OF TEST?
Next, we asked what kind of test they took. The majority (46%) took a cheek swab test, while 32% took a saliva collection test and 19% took a blood test. None of these methods is better or worse than the other in collecting samples.
WHY TAKE IT?
Our next two questions asked about motivation: Why take a DNA test? It turns out there are a number of reasons why people might do so. In terms of what made them actually commit to the test, 43% of respondents stated that curiosity was the main driver. For others, someone suggested they take it, whether it was a friend or family member (23%) or a health professional (18%). For a small segment, they decided to take the test after seeing it advertised or talked about in the media, or they were given a test as a gift.
WHAT WAS THE GOAL?
In the last question, we saw that curiosity was the biggest reason our respondents took the test, and here, the primary goal of taking it was to learn more about their ancestry (55%). For 15% of respondents, their goal was to learn more about their health risks by understanding their genetic make-up. The remaining 30% also had a goal of learning something about their body or their health, whether it be the risk of passing along a disease, understanding weight loss or fitness potential, or screening during a pregnancy.
Finally, did the test help the respondent complete the goal they were after, whatever it was? The vast majority said that yes it did (82%). This means that a genetic test was key in helping our respondents get something achieved in their life, from answering a question about their health or background to arming them with information for the future. 12% responded that it was “hard to say,” which could mean either the results were unclear, or they weren’t sure what to do with the results once they got them.
Even in the simple act of asking our respondents why they decided to take a genetic test, we’ve uncovered a big take-away, as there seems to be two wholly different audiences for genetic testing. Half of our respondents used their test to find out more about their ancestry, and trace their roots and heritage into the past. The other half is using genetic testing to discover more about themselves and how their bodies work, what their health risks are, and how they can go about becoming a better version of themselves.
FEELINGS TOWARDS THE TESTS
Now that we understand who is taking the test and their reasons for it, we wanted to find out how our respondents felt about the test. In other words, was it useful? Did it help them? Or was it a waste of time and money?
FEELINGS ABOUT THE RESULTS
86% of respondents found their test results useful, with 50% replying that it was “very useful,” and 36% replying it was “somewhat useful.” This means that the overwhelming majority found something of value in their test results, whether it be an answer to their question about their health, or a clue to their history. 11% were neutral, the remaining 3% did not find their test useful.
RATING THE RESULT
In terms of understanding their results, 64% found them to be clear, or “not confusing at all.” This could be due to some explanatory legwork on the part of the testing company, or the healthcare practitioner having the training to understand how to interpret results. 29% of respondents did find their results somewhat confusing, which could be due in part to unclear communication from the testing company, or a lack of understanding on the part of the healthcare practitioner, or no practitioner being involved at all. 7% found their results “very confusing.”
An assumption might be that those who took an ancestry test found their results clear, while those who took the test for deeper health and disease data found their results confusing. But respondents were actually split: Of those who took a test to understand more health-related insights, some found their results clear while others did not, and it was the same for those who took the test for ancestry information. This simply shows a lack of consistent translation and explanation on the part of the company or practitioner.
MORE IMPACT FROM THE RESULTS
When asked what would have made their test results more impactful, our respondents were split on how the testing experience could have gone further to meet their needs. The majority of our respondents (25%) wanted more personalized insights — which makes sense, considering DNA testing is based on an individual’s unique genetic make-up. But respondents also wanted more actionable insights (20%), more education (19%), more involvement from a doctor or healthcare practitioner (17%), more explanations about the science of the test (13%), and more recommendations (6%). It seems like test-takers got their results, and then weren’t sure what to do with them.
ACCURACY OF THE TEST
Finally, we asked their thoughts on the accuracy of the test — which is an interesting question given that, unless they had gotten a previous test or were a tester themselves, their thoughts on the accuracy are based on their expected results. 38% believed their test to be “very accurate,” with the same percentage believing it to be “somewhat accurate.” Of those who believed it
to be “somewhat accurate,” does that mean that the test told them something different from what they believed it would, either in terms of ancestral data, or something about their health make-up? Is there an air of doubt and skepticism around DNA testing in general? Some of the qualitative responses showed that some respondents did question the validity of the test in general.
The majority of our respondents found their test results useful and easy to understand. But many were left wanting more after they received their results, in terms of more actionable next steps, more insights, and more guidance — in other words, generally more instruction on “What do I do now?”
THE IMPACT OF TESTING
In terms of “What do I do now?” we wanted to know how receiving the test results altered the respondents’ lives. Did they make different decisions about their lifestyle choices? Did they change behaviors? Or was there no impact all?
IMPACT ON DAY-TO-DAY DECISIONS
We wanted to see how test results impacted the day-to-day lifestyle decisions for our respondents. 41% made some kind of change in their daily activities based on the information they received in their genetic test, with 17% of those making “major changes” in their lives. This is exciting, in that a simple DNA test prompted real change in a person’s life.
But 58% said that they didn’t make any changes in their day-to-day lives based on the results of the test. This begs the question: Wouldn’t someone take a genetic test in order to find out information they can use to make changes in their lives? Maybe not.
In drilling down into the responses, the assumption might be that those who took the test to find out their ancestry perhaps didn’t make any immediate changes, while those who took the test for health insights did. But that wasn’t the case: While some who took the test to learn about their ancestry didn’t make any changes, some made both major and minor changes.
And for those who took the test to learn more about their personal health and wellness, some made changes, but many others took no action. This again raises the concern that while some consumers understand the next steps and how to make personal changes based on their results, others don’t.
However, we did find a factor that significantly affected whether or not respondents made changes in their life based on their results: Had they had taken their test with a healthcare professional? Of those who took an at-home/mail-in kit, only 36% responded making some
kind of major or minor change, with 39% making no change at all. Yet of those who took a
test in partnership with a healthcare professional (like a doctor, dietitian, naturopath, or nurse practitioner), 61% reported making major or minor changes to their lives — nearly double the at- home test takers. Only 19% said they didn’t make any changes at all in this scenario. This means that those working with a professional who could provide context, guidance, and next steps were more likely to make changes in their lives after getting their test results.
Of those who replied that they did make changes in their lives, three-quarter of them kept the changes going for more than 12 months — which is a long time when thinking about changing habits or lifestyle choices. People don’t tend to make changes to their day-to-day lives for fun, which means that the genetic test prompted them to alter their status quo for the better.
Of those who made sustainable changes, the top three reasons why they took the test were to find out about their ancestry, to learn about their health risks, and to find out how genetics could help them manage weight.
SHORT TERM CHANGE
We asked everyone what kind of change they saw in the short term, based on the results they received. The largest segment that reflected short term change was mental health and state of mind (20%) around ancestry results, understanding health and disease risks, embryo screening, and medication risks. But respondents noted changes in other areas, too, including diet (14%), fitness and exercise (13%), sleep (13%), relationships (12%), social activities (10%), work (7%), and leisure activities (6%). “Other” reflected mostly no short term change.
LONG TERM CHANGE
Long term changes nearly matched the short term changes in terms of breakdown, with mental health and state of mind again leading at 19%. This just shows that insight into one’s genetic makeup can have lasting benefits on every aspect of one’s life.
What we learned from this section is that genetic testing prompts change, though not as much as expected. With over half of our respondents replying that they didn’t make any change based on their results, we’re seeing a missed opportunity for education and awareness around next steps, and how test takers can apply their results in meaningful and actionable ways. We did find, however, that those who took their test under the supervision of a healthcare professional were more likely to make changes to their everyday lives. When the results did impact change, they were around mental health and state of mind, diet, fitness, and relationships.
As we’ve seen from this survey, there is already a segment of people who are using genetic testing to uncover ways to alter their lives around health and wellness areas like diet, fitness, sleep, relationships, and mental health. The best use case for genetic testing is for individuals to understand how their genes and lifestyle choices work together, and to foster better everyday choices for increased quality of life.
But as we found in the survey, there are still things that are lacking: While genetics testing offers the greatest value in the area of personal health and wellness, half of our respondents took it to learn more about their ancestry — not themselves. And while most people found their test useful and helped them achieve their goal, there was also a lack of applied change after the results, and a desire for more information around the science, more personalized recommendations, and more actionable insights. We also saw some questions around test accuracy as well.
This means that there’s a lack of awareness around the importance, validity, and benefits for long term health that genetic testing can provide. When asked if they would recommend a test to a friend, 85% of respondents said they would, but when asked the reason why, a number of respondents said because it was “fun.” Genetic tests should be a blueprint for someone to build a healthy life upon, not a novelty.
Genetics testing still has a long way to go — not in terms of scientific discovery, but in terms
of consumer knowledge and awareness on what testing can offer them, and how they can use insights about themselves to impact their daily lifestyle choices. But this simply identifies a great opportunity for increasing education, awareness, and transparency.