Recently, we have been posting about the changes in user perceptions on the way genetic data is owned, handled, and shared. For example, we posted about the ethical considerations of creating a national genomic data base, and who owns the genetic data obtained from a direct to consumer genetic test. In these posts, we have touched upon the public’s concern over data privacy and how they are starting to realise the financial value of their data to large technology companies.
So, this begs the question: how much is your genetic data worth?
Technology companies are currently profiting from selling all different types of data. For example, data on your internet and social media use is currently values anywhere between $1 and $100, coupled by the many billions of users of the internet, this a goldmine for people to sell the use of their data.
When it comes to health data, as Professor Ernst Hafen said in a recent interview: “We are all billionaires in terms of our genome data”. Genomic data is extremely useful, and everyone holds a wealth of data within every cell in their body. Imagine what this could unleash for health companies wanting to create personalised medicine?
Genome sequencing costs continue to fall with the advent of new technologies, and direct to consumer tests are offering paid-for services to have all or part of your genome sequenced in return for feedback on your health and heritage. However, this data is becoming “property”, a commodity you can choose to share or keep to yourself, and in the future, it is likely that companies will be paying the consumer for their data.
A study published in PLOS ONE recently reported that around 50% of participants would be willing to “sell” their genetic data for an average cost of $95. The Genomic Data Governance Survey (GDGS) was based on 2,020 participants from various locations in the US, and were shown an informative video about current market costs for phenotyping and privacy risks. They were then asked what they would expect to receive from a large company in exchange for their data.
Strikingly, 11.7% of participants were happy to share their genetic information for free, 37.8% were not willing to give up their data at all, 50.5% for share their data for a fee.
From those willing to share their data for a fee, the average amount they wanted to be compensated came to just $130. However, they were also asked how much they would be willing to pay for personalised reported findings, which came to an average of $35, meaning the net pay-out they would expect from the company was $95 on average.
The study also found that it was what the data was going to be used for, and how it was regulated, that made the biggest difference to the participants’ willingness to sell, not who they sold to. The five categories of who they were asked about selling their data to included technology companies, government, hospital, pharma and universities.
The study found that the ability to have their data deleted on request was the most important factor, with 72.2% of people saying this would increase their willingness to get involved. This was followed by 69.8% of participants saying they would want assurance that the data would not be sold or shared with other organisations, and that the company would ask permission for each specific use of data (67.9%).
Direct to consumer companies such as 23andMe are selling use of the data to companies such as GlaxoSmithKline and Amirall to aid in precision medicine research, in multi million-dollar deals. As the profit from genetic data grows, the public are going to increasingly want compensation for providing their samples.
There are companies that are responding to the change in perceptions, offering to pay for their genetic information, but it remains clear that genetic testing firms share your data more than you think.