WELLINGTON Privacy Commissioner Bruce Slane has warned that health registers could be at risk if patient confidentiality is breached.
He was responding to comments by Professor David Skegg, an Otago University epidemiologist, at the Gisborne cervical cancer inquiry.
Professor Skegg had proposed an audit of all Tairawhiti Healthcare cases of cervical cancer in the past decade.
He criticised the Tairawhiti Regional Ethics Committee, which agreed to the study in April but ruled that consent must first be obtained from the women concerned, or their next of kin.
Professor Skegg told the inquiry on Wednesday that it was not practicable or desirable to approach the women.
"Since their diagnosis was made up to 10 years ago, some would have died and others would be untraceable."
But Mr Slane said yesterday that care should be taken not to break promises of confidentiality made to people being encouraged to join a register where there were strict research controls. People would otherwise lose confidence in the system.
"Enthusiastic as epidemiologists may be, the register may not have existed if people had thought the research objects would be loose or wide."
Professor Skegg said the cervical cancer and breast screening programmes were devalued when privacy was favoured over the common good.
He said ethics committees nationwide took a "highly restrictive view" of the use of health information for research.
Unless the balance was redressed, the kind of problem that had led to the inquiry could recur.
But Mr Slane said no regulations had been passed to define what research might be carried out, and that was nothing to do with privacy.
The Health Information Privacy Code said information could be used for the purposes for which it was collected and could be disclosed to others if that was one of the purposes, or if it was a directly related purpose.
That also applied to other situations where people were told some information might be used in certain, very strictly controlled circumstances for research, Mr Slane said.
Professor Skegg appeared to be objecting to the fact that ethics committees made legal interpretations of the privacy code rather than just balancing the ethical considerations.
Mr Slane also confirmed that no one had applied to him under Section 54 of the Health Act for permission to collect, use or disclose information.
Permission could be granted where there was clear benefit to the individual concerned that outweighed the need for his or her privacy or where there was a wider public interest.
- NZPA
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