Genomics England promises participant data access
Genomics England is the company that will be sequencing the United Kingdom 100K Genomes Project. In response to a question raised during a recent “Town Hall” event, they stated that participants will have access to their data:
Q: Can I have access to my data? And how soon?
A: A patient can have access to their data if they wish and this can be provided to them in the appropriate format. The patient will receive the feedback from the sequencing and analysis of their genome via the clinician who is providing them with on-going care for their disease or condition.
We hope this means that participants will have access to the same “raw data” about their genomes that researchers will. If so, this represents an excellent step forward for both participants and researchers.
In this survey of GWAS studies by Ramoni et al., 4% of studies surveyed had returned individual results to participants. An NIH policy mandating data access for participants, as we recommended last week, would greatly improve this statistic. We hope providing participants access to their personal and identifiable study data becomes the norm rather than the exception.