How Much Is Your Genetic Data Worth?
50% of US citizens say $95 is all it would take for them to hand over their genomic secrets
Tech giants like Facebook and Google are currently generating astronomical profits from our data. An individual’s online information is valued anywhere between $1 and $100, and as of last month, Facebook has 2.4 billion users.
This is just based on what you’re browsing and interacting with online. Imagine what a company could do with with your whole genome, or even just part of it. From sharing with healthcare insurance companies to creating personalized medicine, the possibilities are literally endless.
As the cost of genome sequencing continues to plummet with improved technology, how we think of our genome will change. Currently, it costs $1999 to have your whole genome sequenced by Veritas, however as a publicity stunt to show how much the costs would decrease in coming years, they offered the service for $199 for a limited time in 2018.
As the ease of obtaining genetic data increases, instead of being an indicator of health or disease, your genome will be seen as your property — a commodity that you have the option to share or keep to yourself.
Today, companies such as 23andMe operate by charging customers to discover more about their genome. In the future, this will likely be reversed as the public begin to realize the true value of their genetic data.
So, how much is your genome worth? A study published last week in PLOS ONE reported results from a recent survey that found 50% of participants would be willing to sell their genetic data for an average of $95.
The Genomic Data Governance Survey (GDGS) was based on 2,020 participants across various different locations in the US. They were first shown an informative video that provided factual information about genomic databases, such as current market costs for genotyping and privacy risks. After watching the video, participants were asked what they would expect to receive from a large company in exchange for their genetic data.
- 11.7% were happy to share their genome for free
- 37.8% were not willing to give up their data, for any amount
- 50.5% would share their data for a cost
Participants that wanted to sell their data then provided the fee they would be happy to receive, and the average came out at around $130.
Given that this is approximately the current market price for consumer genotyping, this isn’t surprising. However, they were then asked how much they would be willing to pay for a personalized report of the findings. The average of $35 brought the net payout down to $95.
Of the ‘sellers’, the survey also found that the type of company buying their data didn’t matter much. Of the five categories considered (tech, government, hospital, pharma, university), there was no significant difference in willingness to sell.
The deal-breaker was how the data was going to be used and regulated.
Of the various governance policies put to the participants, 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 for involvement.
This was closely followed by an assurance that data would not be sold or shared with other organizations (69.8%), and assurance that the company would ask permission for each specific use of the data (67.9%).
The GDGS is the first to investigate public opinion of genetic data usage by large companies and is a huge contrast to previous studies based on academic institutes using such data.
These past studies all found that upwards of 50% of people were willing to share their data for free, with one survey from 2015 even finding that an institution’s policies surrounding usage and sharing of data did not influence willingness to participate.
The new findings suggest that public opinion is moving in favor of more regimented governance policies when it comes to our own genetic data. This is likely because the average person is becoming more informed on the subject as it grows in popularity and is more widely reported by media and news outlets.
23andMe are attempting to remain on the side of the public, by being very transparent about how they use data, and offering an option to ‘opt-out’ of their research ventures when you sign up.
However, they are also leading the way for personalized medicine research by joining forces with companies such as GlaxoSmithKline and Amirall in multi-million dollar deals. As the potential to profit from our genetic data grows even further, tech giants wanting in on the action will become inevitable and it won’t be too long before anyone can get paid for providing a tell-all saliva sample.
Big tech companies were exploiting our data for years without our knowledge, and only recently have been forced into more transparent models of data sharing. This study demonstrates that, thankfully, the same situation is unlikely to occur with genetic data as people are progressively becoming more aware of their rights concerning their own genome.