Irish public invited to weigh in on the use of genomics research

15 Mar 2022

Image: © Siarhei/Stock.adobe.com

The role of genomics will be the subject of a citizens’ jury, which will deliver a verdict to help shape future policy and regulation in the sector.

A new citizens’ jury is being formed to debate and discuss to examine the benefits and challenges of genomics research in Ireland.

Organised by the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI) and the RCSI Public Patient Involvement Office, the jury will be guided by an independent oversight panel made up of representatives from Rare Diseases Ireland, Health Research Charities Ireland and the RCSI University of Medical and Health Sciences.

Future Human

IPPOSI board member and professor of neurology at Trinity College Dublin, Orla Hardiman, spoke to SiliconRepublic.com about the citizens’ jury and why it’s so important.

“We are and always have been a little bit behind the curve when it comes to genetics and then more recently, genomics in Ireland,” she said.

“The role of genetics pervades throughout the healthcare system now, but we haven’t really kept up to date with that so we don’t really have a good integrated Irish approach towards both the benefits of genomics and also the potential concerns and risks that might arise.”

The field of genomics focuses on the structure, function, evolution, mapping and editing of genomes, which is a complete set of DNA.

Using high-performance computing and bioinformatics techniques, genomics researchers analyse large amounts of DNA-sequence data to find variations that affect health, disease or drug response.

It is a fast-evolving field and its benefits within the healthcare sector include precision and personalised medicine, and a better understanding of potential disease markers and characteristics.

However, many have voiced their concerns around the use and regulation of genomic data, especially in relation to the privacy of the patient.

Speaking to SiliconRepublic.com last year, clinical geneticist and medical genomics researcher John Greally said there are “inherent structural problems” when it comes to performing data-intensive research while protecting the patients’ privacy.

“The study participants may be attracted by the goal of the study, but may not realise the privacy risks involved, especially as the data and questions involved become more complex, something highlighted by genomics research at present,” he said.

Hardiman added that there are also concerns around allowing genomic data to be mined largely by private companies. She said that this private approach towards analysing genomic signatures could result in that data being “locked away from the Irish population”.

Other concerns revolve around how genomic information could be used by employers, banks, insurance companies and businesses to discriminate against one person over another in the provision of services.

“The other big question is the resourcing around the services or the integration of genomics within the healthcare sector,” she said.

“There’s clearly an advancement in science that embeds genomics right in the centre of how we practice, but there’s been a lag in the resourcing that we require in order to make that something that is part of everyday practice.”

Being part of the genomics conversation

Hardiman said the citizens’ jury aims to generate a set of discussions and statements that would inform a policy around the development of the genomics strategy.

Anyone who is over the age of 18 and a resident in Ireland can apply to be part of the citizens’ jury on the topic of genomics.

Once selected, the 25 jury members will meet for a number of sittings chaired by an independent facilitator during the month of June 2022.

They will have the opportunity to hear testimony and to cross-examine witnesses who are expert not only in the field of genomics, but also in the related areas of medical care, ethics and law.

‘Everybody has genetic code. Everybody’s voice is important’
– ORLA HARDIMAN

“This is a sort of on-the-ground educated perspective from people who might not necessarily know very much about science or know very much about healthcare, but who may have views on the role of genetics and genomics, the concerns that they might have around the utilisation of this very powerful set of new technologies, and how these might be curated and placed within the Irish public domain,” said Hardiman.

The jury will examine how genomic information can improve healthcare as well as look into the extent to which the use of genomics in Ireland should be increased, and the risk and concerns that may bring.

“The objective is to get as broad a base of representation as possible,” said Hardiman. “Everybody has a view on this. Everybody has genetic code. Everybody’s voice is important”

Once the jury has deliberated on what they hear, they will reach a verdict which will then be discussed in depth via a series of follow-on workshops with diverse population-based groups in September 2022.

Members of the Irish public can find out more information or apply to be part of a jury on the IPPOSI website. The closing date for applications is Wednesday, 23 March 2022.

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Jenny Darmody is the deputy editor of Silicon Republic

editorial@siliconrepublic.com