Following on from our post on Direct to consumer genetics – Whose data is it?, we are exploring user views on the DTC market and how this is changing.
A recent survey evaluated the evolving public views on the value of their genetic data, and how they expect genomic databases to be governed.
Previous research into the public opinion on genomic biobanks has mainly focused on research biobanks owned by academic institutions, where the individuals providing their data did so altruistically to help aid science and precision medicine. The findings of this previous research has generally suggested that when it comes to non-profit research biobanks, the public are generally willing to donate their data, however this view is changing with the growing awareness of the commercial value of their data and the privacy risks.
This survey set out to assess the willingness of contributing genomic data to both non-profit and for-profit organisations, as well as governance policies by providing them with a three minute video overview of how things stand and the results showed:
- Only 11.7% of respondents were willing to provide an altruistic donation
- 6% of respondents would want to be compensated for their data
- Nearly 38% of people were unwilling to provide their data even if they were paid.
This contrasts with previous surveys on donating genomic data to research biobanks where willingness was above 50%.
The research also aimed to analyse how much money individuals would like to be compensated for their genetic data, and the average was $130, the same amount that companies get paid per genome showed in the video before the survey. This indicated that the pre-survey video influenced the user’s perceptions.
There are already are some DTC companies offering to pay for genomic data, and companies are updating their governance, so it begs the question of what else is holding the uptake of DTC tests back? Why is the market falling at the rate that it is?
Do the public see genetic data as something could come back as falsely incriminating? Or is it more about who is running the tests?
Last year, UK Health Secretary Matt Hancock commented on plans for the NHS to offer paid-for genomic sequencing to healthy people who will agree to share the data. The proposal was part of the Life Sciences Sector Deal 2 announced in late 2018, and that Genomics England would run this endeavour and that it would contribute to the next ambitious target of sequencing 5 Million Genomes and unlocking the future for precision health in the UK.
Would healthy participants still be happy pay for their genome to be sequenced, and have their data shared, if it were conducted by a more credible source and not a vendor company?
If so, it may be a case of who is behind the testing for the drop in the DTC market.