People Are Now Selling Their DNA For Money – Forbes

General

One biotech startup is taking DNA data to the next level and is using a new approach on how they collect their data by purchasing it right from people directly.

Genomelink is a free web platform that enables consumers to upload their raw DNA report and discover more about their DNA traits that go beyond ancestry. Users can obtain their DNA data from DNA test companies like AncestryDNA and 23andMe, and upload that to the platform to access over 150+ traits spanning nutrition, fitness, personality and cognitive ability. 

More than 26 million people have already done a direct-to-consumer test and now they can use that information to actively contribute to research that accelerates the progress of personalized medicine. It can revolutionize the way that consumers control their personal DNA data and transform the medical industry with drug discovery, treatments and even cures for various diseases.

Tomo Takano, founder of Genomelink, has partnered with DNA giants, LunaDNA and Sano Genetics, and is compensating consumers for their genetic information. He believes that the negative news that has come from DNA kits such as people finding out their risk for disease or families finding out negative information about their biological parents has caused for many to not want to take these tests. However, he says by focusing on traits like nutrition, fitness and personality they hope to create more exciting ,yet still educational, “DNA discovery experiences” for consumers. 

“We believe partnerships like ours with Sano Genetics are the first step in researching rare diseases and disorders with no cures. We want to use DNA data to research and study common disorders such as eczema, psoriasis, diabetes, and mental health conditions, as well as rare disease places like muscular dystrophy,” says Takano.

While the data collected will mostly be used by physicians, patients can still benefit greatly from being informed about their nutrition and physical assessments. For nutrition and fitness, there is a growing field called “nutrigenomics,” which tries to understand how genetics influences our food and nutrition intake. There are already some professional athlete teams that are using genetic information to personalize training and this data collection could help this grow even further.

However, privacy concerns have also been a major issue with DNA platforms and many are afraid of where that data is being stored and how it is being utilized.

“We deeply care about users’ privacy and data security. That’s why users can delete their data from our servers by themselves at any point. We will never sell users’ data. We have at times recruited users to participate in research projects funded by academic institutes – however, we always reach out to users for explicit consent and provide a monetary reward for participating,” says Takano.

As for the compensation for those who participate in the studies, it can range from $10 for a simple survey to hundreds of dollars for more complex studies. In addition, participants receive compensation for any travel expenses and health benefits, including access to new treatments via clinical trials. In addition, participants receive regular updates on the research they support, and free personalized health and wellness reports based on their genetic profiles.

Sharon Zeqiri is one of those who contributed her DNA for compensation. She was selected for a study on how quickly a body with her genome-type metabolizes orange juice. The test required her to drink a pint of orange juice, then breathe into a mask. This will contribute to research into how quickly different sorts of people metabolize drugs.

“In the back of mind there was a concern; it’s such a new field, and who knows what will happen in the future. The fact that I thought my contribution could be helpful balanced my rather nebulous worries. I was assured that my data was encrypted. Both Genomelink and Sano Genetics are upfront about their work. I signed a consent form and I could have opted out if I wanted to at any point,” said Zeqiri.

“I would definitely do it again and I would encourage other people to look into it for themselves and consider taking part. [It helps] people know more about themselves with just a few clicks of a button, and [also] helps them do more with their DNA data. This allows ordinary, unskilled people like me to contribute to medical research, while getting paid,” said Zeqiri.

With this volunteered information, DNA science can reach new heights and potentially save lives. Genomelink may be the first in the race, but there will be many more to follow suit.