Why it’s now time for companies like 23andMe and uBiome to go mainstream.
Direct-to-consumer genetic testing (or DTC GC) has unofficially been dubbed the Wild West of Genomics. This is largely due to genetic services offered outside of the traditional healthcare system and without the involvement of a health professional. Tests are ordered online and delivered to your home. You, the consumer, collect a sample, return it to the lab and wait patiently for your results.
Although stripped down to its bare bones, at-home genetic sampling appears harmless. This consumer-driven test, however, has some serious opponents — including the FDA. Scientists, policy makers, bioethicists and health professionals are concerned over the validity and utility of the data. The interpretation of results are also anticipated to be a burden on the medical system.
Despite these Negative Nancy’s, the rise of DTC companies such as 23andMe and uBiome have proven that society is perhaps ready for something entirely different; in January of this year, 23andMe boasted over half a million customers, while uBiome continues to attract regular investment on the micro-investing platform, angel.co.
It’s been around for years and has slowly crept into the mainstream public. Here’s why the consumerization of DNA is ready to take off now, more than ever.
The price is right
The cost to sequence an entire genome has plummeted, dropping from almost a quarter of a million dollars to around $10,000 in 2012. It gets even cheaper. According to a January 2014 press release, the biotech company Illumina unveiled a new sequencing machine that will sequence a complete human genome for $1,000.
This affordability is further translated to the consumer. Through either 23andMe or uBiome, DNA analysis of either human or gut microbial DNA is roughly $100. Although not a complete genome sequence, the results provided are extensive. Not only do you discover genetically, who you are, but you also have the ability to compare your DNA with the DNA of others.
Science fiction no more
Genetic information no longer means science fiction. We may not be completely comfortable with the idea of designer babies, but the otherworldliness of DNA technology no longer exists for many. One study published in July of 2013 concluded that prior to taking a DTC genetic test, participants were motivated by curiosity, gaining actionable knowledge and altruism. An earlier publication reported similarly that health, curiosity, contributing to research and recreation were other motivators for taking the test.
The world wide web
The Internet has paved the way for the evolution of science itself — first in the form of big data. DNA is not visible to the human eye, but fundamentally, it’s made up of a linear string of base pairs known as As Ts Cs and Gs — roughly three billion of them. The data points collected from a complete genome sequence was big data before big data was big data.
Companies have learned to analyze large sets of information for capitalistic endeavours — look at Google, Facebook or Yahoo!. Through the Internet and capitalism, new job categories have surfaced, dedicated to analyzing incoming information that’s collected every second. Just as we gather information about web searches, location data or purchasing habits, the same data mining principles can be applied genetic information.
The Internet has opened the lines of science communication. We are less private now than at any other time in history. We freely share the nuances of our daily lives over a smattering of social channels. Although privacy is still an issue for some, many have succumbed to the fact that the things we do and say online are not behind closed doors.
With this open attitude and a willingness to share personalized data, stems a new type of science — a movement called citizen science. Typically, research is conducted by a team of scientists. With citizen science, non-specialists voluntarily participate or organize in research projects, which are often crowdsourced. As is the case with these direct-to-consumer genetic tests. People have shared their genetic information with the goal of contributing to research not associated with traditional, government-regulated institutions.
Jessica Richman, co-founder of uBiome says that this sharing and exchange of information empowers everyday people and allows us to self-experiment as individuals and as society that will, in turn, “democratize the process of scientific discovery.”
Through crowd-sourced science, the pace of discovery has rapidly changed. With the data collected through DTC genetic tests, 23andMe has done more studies in a few months or years compared to the several decades it would have taken with traditional methods.
Power in numbers
Citizen science is not a new concept and goes back to the age of Darwin. Although direct-to-consumer genetic tests are not that historic, their popularity (despite recent regulatory setbacks) has grown. People are innately curious and crave to contribute to something larger than themselves. We are also less afraid of the potential of science. It’s not just about Gattaca and test tube babies anymore. It’s about knowledge — and knowledge is power and there’s power in numbers.