2017 was the year of the consumer DNA test, with the number of people who have had genetic genealogy tests doubling to exceed 12 million. While ancestry is the largest category, people are adding tests for health, nutrition, fitness, sleep, and even wine preference to their online shopping carts. Hundreds of product offerings promise that insights from your DNA will enable you to optimize various aspects of your life.
As a genetic counselor who believes that everyone should have access to insights from their own DNA code, I am enthusiastic about the growing consumer DNA industry. But there are some significant concerns that the industry needs to address.
Privacy and security are paramount, and companies offering consumer DNA testing should be transparent about how they protect, store and utilize their customers’ personal information. Consumers are the ultimate owners of their DNA information, and companies should have policies by which customers can choose how their DNA will be used and give them the right to retract their DNA information from the company’s database at any time.
While there was initial concern that consumers learning their genetic predisposition for certain health conditions could lead to adverse psychological consequences (cue Jack Nicholson — “You can’t handle the truth!”), studies have not thus far indicated this to be true. Only a small minority of consumers receiving DNA results for diseases such as diabetes, heart disease, and Alzheimer’s disease report any psychological distress, and most view the information to be of high personal utility.
But an issue that remains a point of contention for many scientists and genetic experts is whether associations between DNA and multifaceted aspects of human health and behavior like skincare, nutrition and fitness are truly ready for primetime. (For example, one DNA variant may influence whether you are primed to be a sprinter or an endurance runner.) In other words, is there enough scientific evidence behind them, or enough personal utility in understanding them, to include them in product offerings?
In considering that question, it’s important to understand that genetics is probabilistic, not deterministic. In other words, it tells you whether something might happen, but not whether or not it will happen. Even carrying a DNA variant in the well-documented breast cancer risk genes BRCA1 or BRCA2 does not guarantee someone will get breast cancer.
A constellation of factors affect risk for disease, including genetics, lifestyle and environment. Generally, DNA variants that affect complex traits like athletic performance and sleep habits have moderate influences on these traits, and they are most meaningful when considered in conjunction with key lifestyle and environmental factors. DNA results — along with your steps, the calories you consume, your vitamin supplements — are another data point to ‘track’, another piece of the ever-complex puzzle that is you.
This nuanced understanding of how to put findings into context has been lost in some of the hype around consumer DNA products. The industry must take on the responsibility of educating consumers if it is to build trust and grow. Tech and life science investors see big potential in the space; the Silicon Valley startup Helix recently announced the close of its $200M Series B to grow its online marketplace of DNA-powered products, for example. But the potential will only be realized if the industry doesn’t race ahead of consumer understanding — the value of DNA information is a function of how it is conveyed and comprehended.
In today’s world of self-quantifiers, there can be immense value in learning how our DNA, along with all the many choices we make in our daily lives, can impact our health and well-being.
And as our understanding of the science continues to evolve, the consumer has the unique opportunity to participate in crowdsourced research, to contribute to our body of knowledge. The companies and products that will emerge as winners in the growing consumer DNA space will be those that offer sound science, rich education, and lasting utility.
Sara Riordan is a co-founder of two consumer DNA companies, Exploragen and Vinome, and a consultant for companies in the precision oncology space.