My contribution to Genomics Law Report’s superb “What ELSI is New” series is up now.
The gist of my argument: as we move into an era of large-scale whole-genome sequencing studies and the utility of genomic information grows, researchers will increasingly frequently be faced with the discovery of highly medically relevant information within their subjects’ genomes. Yet under the consent procedures established for most modern genetic research projects the anonymised subjects would never have a chance to learn about this information.
As such, people will die from breast cancer and other diseases even though someone out there possesses genetic information
they would have needed to avoid this that could have been used to guide additional screening to detect such cancers early.
Throwing medically actionable data away without the subjects ever having a chance to learn about it is unconscionable – we need to start changing the way we think about the rights of research subjects to their own data.
It’s important not to understate the challenges posed by returning research data to research subjects – such as balancing against the need for privacy and data security, or unduly alarming people with inaccurate results – but these are not reasons to avoid data return. They are simply obstacles we need to overcome.