Start-up Genomics Medicine Ireland (GMI) has a 15-year partnership with multinational pharma group Abbvie to map the genomes of 45,000 Irish people in an effort to develop new drugs and to find cures for disease.
The Irish company raised $40 million (€37.9 million) in funding last year.
It uses population-based genomic analysis to help understand the genetic, lifestyle and environmental factors which lead to disease, with a view to developing new therapies and cures. The approach is built on work done in Iceland by DeCODE Genetics, founded in 1996.
Dan Crowley, acting chief executive of GMI, said the company did not reveal participant numbers because this was commercially sensitive.
“We have agreed terms with five research sites and we have a number of studies to be rolled out in the coming months,” he said.
“The desire among those with a chronic complex disease and their families to find a cure is incredibly strong. This is the biggest impetus for people to participate in a research study – that by doing so they can help in some small way to help find better diagnosis, treatment and even cures.
“We expect that as more people are educated to the potential of genomic research and more studies are rolled out, we will see increased interest among the general population to participate.”
All study participation is entirely voluntary and participation cannot take place without the participant’s explicit consent.
Mr Crowley said all the studies were designed so that the company was “completely removed from the study participant”.
Authorised researchers will only be able to access the data through a “secure and monitored environment”. Researchers will also have to undergo “a thorough identity check” before they will be granted access.
The company said privacy protection was of "utmost importance" and it had undertaken a privacy impact assessment using independent consultants Mazars. Its systems had been designed from the outset to be compliant with the General Data Protection Regulation.
While it had taken “an abundance of measures to prevent risk of re-identification”, all participants were made aware in the patient information leaflet that such a risk could never fully be eliminated, but that re-identification “would be an illegal act”.
“In the case of rare disorders, we have specifically stated in the (leaflet) that, if a participant has unusual clinical symptoms, it could result in their identification,” Mr Crowley said.
