There was a time when at-home DNA testing was practically unheard of. Swabs of the cheek, fingerprints, and DNA sequencing were saved for criminal investigators or scientists in the lab. Now, all it takes is a box in the mail, a saliva sample, and just a few weeks later, people can access their entire ancestral history or (possible) medical future. Despite intriguing findings, though, DNA kits may risk people’s privacy.
When you send in a saliva sample, you’re not only giving away the “most valuable thing you own,” but you’re also putting yourself at risk of receiving false positives. With over 26 million people sharing their information with DNA databases, and sales increasing exponentially, what is driving people to purchase these kits, and how did they feel about the results? We surveyed over 1,000 people about their experiences with at-home DNA genetic health and ancestry tests. Keep reading to see what we found.
Better Than Expected
A quick saliva sample can reveal vital information about your health, including your chances of developing a hereditary disease and mutations that may affect future children. But of all the reasons behind genetic testing, curiosity was the biggest driver. While only 9% of people took an at-home DNA genetic health test to see whether they should have children, 60% did so because they were curious. Half of respondents also reported taking one to gauge their genetic risk for diseases, and just under a third did so because of family history with a disease.
Even with 31% of people testing their chances of developing a hereditary disease, the majority of people were relieved when reviewing their test results, with 30% feeling concerned. Additionally, 38% of respondents said their results were better than expected, and 55% said they were similar to what they expected. And even when people were faced with unexpected news, 92% said they were glad to know about their health at this point in their life.
Sharing the News
Sharing the results of a DNA test is a cause for celebration when the results are negative (meaning a genetic marker known to cause disease wasn’t found), but a positive test can be a bit trickier. Chronic illnesses change relationships, and the knowledge that one may develop is bound to as well. Nevertheless, the majority of both men and women shared their findings with their significant other, with women slightly more likely to do so. Compared to 28% of men keeping their results to themselves, 16% of women reported doing so as well.
Shockingly, 1 in 10 people said their significant other broke up with them after they shared their results. But a relationship ending may be less about the disease (or marker) and more about what it means. Every relationship comes with some fear of loss, but in new relationships specifically, knowledge about future health can magnify that fear.
And if the results reveal that someone is a carrier, and their unborn child is at a higher risk to develop a disease, relationship goals can change. Nearly 1 in 10 people without children said their test results affected their desire to conceive – and a change of heart could also play a role in relationships ending. But for those testing after having children, 23% also had their children tested, while 27% said they planned to do so.
Time to Make a Change
It’s important to remember, though, that a positive test result doesn’t mean a 100% chance that a condition will develop. Both lifestyle and genetics play a role in disease development, so knowing your risks can help you make changes. According to our study, 46% of people who took a DNA genetic health test made lifestyle changes after reviewing their results, with exercising more the most common change.
Cutting down on processed foods and sugar and limiting red meat were also common changes, with 43% and 30% of people doing each, respectively. Over 20% of people also reported getting more sleep and seeing a doctor regularly. Some people were even motivated to make more radical changes. Considering stress can significantly impact health, nearly 1 in 10 people went so far as to leave a high-stress job after reviewing their health results.
learning About Lineage
Unlike DNA genetic health tests, tests looking for ancestral connections are significantly less likely to come with bad news. While some people may have an unfortunate finding – like their spouse is actually their relative – the majority of people simply find out new information about their ancestry. Before DNA tests were accessible to the masses, learning about our ancestors came from stories passed down by family members. But now that people can learn about their lineage through their genes, 40% of people realized their results contradicted what their family had told them about their ancestral history.
However, people are still wary of learning about ancestry through testing. While the majority of people who hadn’t taken a DNA test said it was because they were too expensive, nearly 40% said it was because they distrusted companies having their information.
But this fear can’t be chalked up to paranoia – companies do use collected DNA. The thing is that people who use these kits consent to it. The saliva samples are stripped of identifying information and sent to labs where it’s used for genetic drug research, but this couldn’t be done without informed consent. When purchasing DNA kits, consumers can allow their sample to be used for research, or they can opt out.
Trusting the Source
Shared information isn’t the only risk associated with at-home DNA kits, though. False positives are relatively common – after all, at-home genetic testing may not use the same technology of medical grade tests – but so are false negatives. And false positives can lead to people making drastic, unnecessary changes. Horror stories of women undergoing preventative mastectomies after testing falsely positive for the BRCA gene mutation have left both consumers and health care professionals wary of DNA testing.
Nevertheless, the majority of people who had used DNA tests were confident in the accuracy of their results – 75% of people said they were confident their health results were accurate, while 79% said the same of their ancestry results. Regardless of confidence, though, considering the risks and taking necessary precautions is vital. Luckily, 61% of people who tested positive for a condition or disease talked to a health care professional afterward.
Making Genetic Testing Crystal Clear
As humans, it’s in our nature to be curious – about where we came from and where we’re going. When genetic testing made its way into homes across the world, a vial of saliva became a crystal ball, revealing people’s pasts and possible futures.
But at-home DNA tests should not be trusted completely. False positives and negatives are possible, and while most people have had positive experiences with at-home kits, you can never be too careful when it comes to health screenings. Picking a reputable, CLIA-certified test, staying informed of the risks, and getting a second opinion in the event of a positive result is the best way to make the most of DNA testing.
Whether you’re looking for a DNA test to try or don’t know what the next step is after getting your results, YourDNA is here to help. Our guides can help you narrow down the best at-home kits to use depending on your desires, interpret your results, or link you to a professional who can make sense of it all. Wherever you are in your genetic journey, visit us online to learn more about the next step.
Methodology and Limitations
We used Prolific and Amazon Mechanical Turk to survey a total of 1,068 respondents about their experiences with and sentiment toward taking DNA genetic health and ancestry tests. We created two surveys to collect respondents for our study: one for people who had taken either a DNA genetic health test, an ancestry test, or both. We collected responses from Mechanical Turk (439 respondents) and Prolific (380 respondents) for that survey. The second survey was conducted for those who had not taken any DNA test, and we collected responses on Mechanical Turk for that survey (250 respondents). To be included in our data, respondents were required to complete their respective survey and pass an attention-check question in the middle of each survey. Participants who failed to do either of these were excluded from the study.
Of all respondents, 48% were men, 51% were women, and less than 1% reported a nonbinary gender. 59% of respondents were millennials (born 1981 to 1997); 24% were from Generation X (born 1965 to 1980); 11% were baby boomers (born 1946 to 1964); 6% were Generation Z (born 1998 to 2017); less than 1% were from the silent generation (born 1928 to 1945); and less than 1% were the greatest generation (born 1927 or earlier). The average age of respondents was 36 with a standard deviation of 12 years.
The data had a 9% margin of error for baby boomers and a 5% margin of error for both Gen Xers and millennials.
Fair Use Statement
There’s still much to learn about DNA testing, but there’s no better place to start than hearing from those who have already done it. The graphics and content found here are available for noncommercial reuse, so you can share our findings with your friends, family, or followers. Just don’t forget to link back to this page so that readers get all the information and the contributors receive proper credit.
A Genetic Counselor’s Perspective:
The idea of unlocking the future of your health based on genetic testing results may be an exciting idea to some. The results of this survey highlight a few important points that are important to understand. While consumers are free to make their own choices regarding pursuing at-home DNA testing, it is important that consumers are making an informed choice.
Based on this survey, 50% of people surveyed took the at-home DNA test to determine their risks for genetic diseases, and 31% of people surveyed took the test due to a family history of disease. 9% took the test to determine if they should have children.
It is important to understand that at-home DNA tests may not be able to answer these questions. It is possible, and actually highly likely, that an individual with a family history of a genetic disease would be offered a different, more comprehensive and accurate medical grade genetic test if they were pursuing testing through a genetics clinic. Yet, 42% of individuals felt relieved by their results. A negative result may not be truly negative and a positive result requires follow-up and a second opinion through a CLIA certified lab testing the appropriate genetic changes concerning for each individual.
The survey highlights some of the psychosocial impacts of genetic testing. Most at-home genetic testing companies may not provide the opportunity to speak with a genetic counselor to discuss potential impacts. Relationships were severed, jobs were changed, and lifestyle factors were affected. This is all based on results that may not be relevant to an individual. For instance, if an individual is determined to be a carrier for a genetic condition, it is important for that individual to understand that their child may not be at risk unless their partner happens to also pass on a mutation in the same gene.
When facing the questions of how to take control of your healthcare, it’s best to discuss these decisions with a healthcare provider. While an at-home DNA test is easily accessible and may seem less costly, the follow-up testing may be necessary either way.
Genetics can be a complicated topic, but it applies to all of us in some way. As a genetic counselor, my goal is to help simplify this complicated information and apply it to each individual. Having access to an informed healthcare provider when pursuing genetic testing can make a difference when all genetic tests are not created equal.