The Minister for Health, Simon Harris TD, has appointed 15 persons to the Health Research Consent Declaration Committee.
The Consent Declaration Committee was provided for in Health Research Regulations made by the Minister under the Data Protection Act 2018.
The Regulations provide for GDPR related safeguards for data subjects when their personal data are processed for health research purposes.
Speaking today, Minister Harris said “Health research is of indisputable importance to our health system. The purpose of the Health Research Regulations is, therefore, to support health research by promoting the necessary public confidence in such research.
“Consistent with our legal system, international best practice in health research and patient empowerment, the Regulations make explicit consent of the data subject the default position for processing personal data for health research.
The Minister added “It is recognised, as it is in other countries, that in limited situations, obtaining consent for certain very worthwhile health research projects may not be possible. For that reason, the Regulations provide for an open, independent and diverse Committee which can make consent declarations that would allow researchers to collect and use personal data without the explicit consent of the data subject in very specific circumstances.
“To protect the individual, consent declarations may only be given by the Committee where obtaining consent is not possible and the public interest in carrying out the research concerned significantly outweighs the need for consent. That process will not only be of benefit to researchers but also make sure that the public can understand the reasons why consent declarations are given.”
The Committee has its own website at www.hrcdc.ie
The website of the Committee invited expressions of interest from anyone wishing to be on the Committee and many of the persons appointed are from those expressions. Others have been directly approached on the basis that they have relevant formal qualifications or professional experience that can help the Committee understand particular aspects of applications. As a result, the Committee contains a valuable diverse mix of persons from different backgrounds, including members of the public, patients and carers. The Chairperson is Brigid McManus, former Secretary General of the Department of Education and Skills.
Speaking about the membership of the Committee, the Minister said “I want to thank the Committee members for their willingness to serve on the Committee and I wish them well in their work. I would also like to take this opportunity to say thank you to everyone who expressed an interest in being on the Committee.”
The Health Research Regulations allow for up to 21 members to be appointed so the Minister can make further appointments in the months ahead based on the nature and scope of the applications received by the Committee.
The appointment of the Committee is an important step in improving governance in health research in Ireland in terms of transparency and openness which are essential to public confidence and the long-term success of health research.