Research is a Two-Way Street
July 15, 2016
By Joyce Tung, PhD
Vice President of Research
Genetics is about to get personal.
Don’t panic, we’re here to help.
It was with those words that 23andMe introduced itself to the world back in early 2007. From the beginning, we have been about the “personal” when it comes to genetic information -- and we have never wavered from that fundamental philosophy.
Our mission statement today (to help people access, understand and benefit from the human genome) expresses this same fundamental belief -- all individuals have the right to their own genetic information.
23andMe was the first to make genetic information educational, simple and accessible to consumers. And what we learned in 2008 when we launched our research program is that engaging people in the science of themselves also engaged them in our research. In fact, more than 80% of 23andMe customers accept our IRB-approved consent to take part in our research program.
This tidal wave of participation is what helps us accelerate the pace of research. Some studies that might have otherwise have taken years to conduct now only take weeks.
To support research, participants often give not only of their time, but also literally of themselves -- their spit, blood and other tissues. Yet in the traditional model of research, people who took part in studies were usually referred to as “research subjects” and often received little in return other than the assurance that they were contributing to society. So we had to ask: can researchers do more for the people without whom there would be no research?
Returning Data: Part of the New Paradigm in Research
I’ll save you the suspense, and tell you now that the answer is “yes”.
But how can a researcher give back? Any honest scientist will tell you that very little in research is guaranteed. We don’t know what the outcome of an experiment will be. After all, that is the point of doing the experiment. But while we can’t promise a particular outcome to our participants, we can promise the one thing we know we will get: information.
And this is where the tide is turning more in favor of the participants. More researchers are starting to support the idea of trying to give results from the study back to the people who took part. One of the key principles of President Obama’s Precision Medicine Initiative (PMI) is to “engage participants as partners in research, including returning results to them in dynamic, user-centered ways.”1
Now this is something we at 23andMe can relate to. We have an unmatched history in the genetics field when it comes to sharing data with participants, from making our scientific publications open access, to explaining our study results in blog posts, to creating new reports for our customers based on our research. From day one, we have worked tirelessly to develop the most effective methods for presenting information in an engaging, understandable way. For example, we invested hundreds of hours into designing our Bloom Syndrome carrier status genetic report. A sample of that report was tested in a demographically diverse group of people unfamiliar with 23andMe, who showed greater than 90% comprehension rates of key concepts, like the meaning of the results and appropriate follow-up. That type of work is part of our commitment to our participants, and we are proud to be a pioneer in this field.
Returning Data as Part of Genotyping Studies
Over the years, we have made our share of mistakes and learned a lot as we developed these tools to present complex scientific information in an accessible way. Now we want to share these tools with the broader research community.
23andMe’s Genotyping Services for Research is the only genotyping platform that both enables researchers to get genetic data from their study participants and gives participants a chance to learn about themselves through their DNA. They get to do that by way of the 23andMe experience and its personalized genetic reports in the areas of health, ancestry and traits. Researchers are already discovering, as we did, that integrating 23andMe into their genetic studies is a powerful incentive for recruiting and long-term engagement.
We know that many researchers want to give more back to their study participants, but they don’t know how. Maybe you are one of these researchers. We say to you, as we said to our first customers back in 2007: don’t panic, we’re here to help.