THE DATA PROTECTION Commission confirmed it has “reached out” to the Health Research Board about the new Irish Covid-19 biobank that will store collected Covid-19 samples. 

Health Minister Stephen Donnelly updated Cabinet yesterday on a €2 million investment in the biobank, which will be set up in August.

Established by the Health Research Board at the request of the Department of Health, the National Irish Covid-19 Biobank (NICB) will store samples of the disease that are collected.

It will also allow researchers to have access to the samples.

The Research Sub-group of the Expert Advisory Group to NPHET is understood to have advised that such a biobank be set up in Ireland.

The new biobank is a collaboration across six academic institutions and 13 hospitals.

Donnelly said that the Government’s Resilience and Recovery 2020-2021 Plan for Living with COVID-19 specifically highlights the need for ‘infrastructure to support biorepository studies’, “as this is key for research that translates into better patient care and outcomes, as well as population health strategies”.

Data protection issues 

A government spokesperson confirmed this week that the data protection concerns had been looked at, saying that the memo that went to Cabinet this week said that data protection principles will underpin regulation and governance of the new biobank. 

However, when contacted by The Journal about whether they had been consulted about the data protection issues or whether they had concerns surrounding the new storage facility, a spokesperson for the Data Protection Commission said:

“The DPC has reached out to the Health Research Board on this matter and awaits their response.”

The Department of Health states that the biobank will ensure all Covid-19 samples are collected “in a coordinated and harmonised manner”.

It will create an opportunity for research and innovation “to increase our understanding of Covid-19, inform new treatment and management strategies, improve outcomes for patients, and better prepare us for future emergencies,” said the department.

Biobanks 

Biobanks collect, store and distribute biological samples and associated clinical data. The department said with no biobanked samples from patients with Covid-19, vaccines could not have been developed in record time.

The NICB will be overseen by a governance board, which will make decisions about access to the samples and data.

Data will also be made available through a public-facing website to ensure transparency, said the health department.

“Crucially, the NICB aims to strike the balance between research with the potential to improve the health of many, while protecting the rights, dignity and agency of individual research participants, as well as building and maintaining public trust,” it added.

Informed consent for participation in the national biobank will be “fundamental”, said the department. 

It highlighted that the new storage unit will enable participants “autonomy, self-determination and the right to bodily integrity”.

“To this end, all samples and data within the NICB will be consented for research purposes,” it added.

Confidentiality 

“Confidentiality and data protection principles will underpin regulation and governance of the NICB. This will ensure that research participants have trust and confidence that their donated biological samples and personal data will be adequately safeguarded,” said the department.

In a statement, the Department of Health said that the NICB will be firmly established and robustly governed” in line with international best practices and standards in the following areas:

• Ethics: Informed consent for participation in a national biobank is fundamental, enabling participants autonomy, self-determination and the right to bodily integrity. To this end, all samples and data within the NICB will be consented for research purposes
• Law: Confidentiality and data protection principles will underpin regulation and governance of the NICB. This will ensure that research participants have trust and confidence that their donated biological samples and personal data will be adequately safeguarded
• Society: With a mission is to enable high quality research that advances health and healthcare, the NICB is founded in the public interest, for the public good.

Professor Paddy Mallon, Consultant Physician in Infectious Diseases at St Vincent’s University Hospital, said having a “rich bio-repository of accessible biological samples and clinical data that is collected and maintained in line with the highest scientific standards and maintenance of privacy protection” will allow for a better understanding and management of Covid-19 and its complications.

“It will also help guide future biobanking initiatives into other diseases affecting people in Ireland,” he added.