Experts sought to take part in new ‘consent’ committee for health research
Researchers will be able to apply in exceptional circumstances to use personal data without consent
Purpose of the regulations is to ‘support health research and promote enhanced public confidence in such research’.
Members of the public and experts in the areas of health, research, ethics and technology are being invited to express an interest in sitting on a committee that will play a key role in overseeing new health research regulations.
The committee will have the power to grant health researchers an exemption in certain circumstances from obtaining “explicit consent” from individuals to using their personal data in their research.
The purpose of the regulations is to “support health research and promote enhanced public confidence in such research”.
There has been some confusion among researchers about how the regulations will apply to them, in particular in relation to projects that commenced prior to their coming into force.
Under the regulations, researchers will have to have the “explicit” consent of individuals whose personal data, including biological samples, they wish to use in research. This is a legal standard under EU data protection law for processing personal data relating to someone’s health.
But under certain circumstances, where potentially important health research might not be able to proceed because obtaining consent is not possible, the researchers may apply to the committee for a declaration giving them an exemption from this consent requirement.
They will have to demonstrate to the committee that they have exhausted all other possibilities to obtain consent from individuals before seeking such a declaration.
In a notice on its website, the committee is seeking expressions of interest from people “with knowledge, experience or qualifications in data protection, research ethics, statistics, information security, e-health, technology, law generally or other relevant areas”.
It is also looking for people with knowledge, experience or qualifications in healthcare, health services management or planning or health research, and for people who are representative of patients and the general public.
The Health Research Board says the regulations “protect the rights of participants while at the same time they promote and facilitate the conduct of high quality research in the public interest”.
Further information about the committee and how to submit an expression of interest is available at hrcdc.ie