This week a BBC article revealed that millions of us are voluntarily giving samples of our DNA to genetic services companies to find out more about our ancestry, our health and our genetic profile.
While many of us do this out of simple curiosity, the detailed information provided to the companies can be used in ways that people are not necessarily aware of.
The BBC reports that in 2016 genetic services company 23andme began selling access to anonymised data to more than 13 drug firms, who have paid millions of dollars for the privilege. Customers do have the option to opt out of their information being used in this way, and can also opt out any time after giving consent. However, in reality once the information has been anonymised and aggregated, it may not be easy to get it back.
Clearly there are advantages in pharmaceutical companies having access to a vast database of genetic information. It could lead to better understanding of, and treatments for, a range of medical conditions which would benefit society as a whole.
Indeed this is probably why most customers apparently choose to opt in to their information being used in this way. However, users are generally required to complete questionnaires asking detailed questions not just about the individual, but about their relatives, who have not necessarily given their consent for this information to be submitted and analysed.
This raises wider questions about who owns what information about whom, and whether it is possible, or permissible, to give consent to use information that does not just belong to the individual.
“If you need to submit information about your relatives, it is worth discussing it with them and making sure they are happy for you to share their data first.”
The BBC article is available in full here.