Health Research Board welcomes update to personal data guidelines

The Health Research Board (HRB) has welcomed an update to regulations governing the collection of personal information for health research purposes.

The Health Research Regulations (HRR) were introduced in 2018 in response to the European-wide General Data Protection Regulations (GDPR) to protect the rights and freedoms of research participants.

The recent amendments covered pre-screening to establish suitability or eligibility for inclusion in health research; carrying out low risk retrospective chart reviews; deferred consent in exceptional medical situations; and new rules on consent generally.

Dr Mairead O’Driscoll, Chief Executive at the Health Research Board, said that the amendments were “important and pragmatic changes to the Health Research Regulations in response to matters raised by the research community”.

“They will enable researchers to carry out research in a way that ensures they safeguard participants’ personal health data while further strengthening the regulatory environment for health research in Ireland,” Dr O’Driscoll added.

The Health Research Consent Declaration Committee (HRDC) has also responded to the amendments and has published specific guidance on its website,

Under HRR, explicit consent is the default position for processing personal data for health research.

But when obtaining consent is not possible the Health Research Consent Declaration Committee (HRCDC), which was established under the same legislation which introduced the HRR, the Data Protection Act (2018), can make a ruling.

“Ultimately, the success of health research in Ireland as in any country is dependent upon public support for research,” the Minister for Health, Stephen Donnelly, said as he announced the amendments last week (January 22).

“Any person using our health services rightly feels that his or her medical information is respected and safeguarded. That is why the purpose of the amendments is to facilitate health research and at the same time enhance public confidence in such research by protecting the rights of individuals in relation to the use of their personal health information.”

Minister Donnelly has also announced the appointment of four new members to the HRCDC: Dr Mary Tumelty, Lecturer in the School of Law, University College Cork; Dr Barry Lyons, Consultant in the Department of Anaesthesia and Critical Care Medicine at Children’s Health Ireland, Crumlin; Dr Cornelius (Con) Cooney, who has more than 30 years’ experience in anaesthesiology and intensive care medicine; and John Woods, Data Protection Officer, St Patrick’s Mental Health Services.

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