Media release from University of Otago

An informed public does not place personal privacy above societal benefits when it comes to using and linking health information for research, according to the outcome of deliberations by a citizens' jury.

This conclusion related to research into the safety of medicines and in the situation where strict safeguards for confidentiality exist, says University of Otago researcher Dr Lianne Parkin.

"The citizens' jury unanimously concluded that researchers should be permitted to use medical information without consent so long as the researchers follow the ethical guidelines and relevant laws which already exist in New Zealand to protect patient privacy" says Dr Parkin.

The jury also recommended that the public should be kept informed about the research that is being undertaken on medicines' safety.  Also, there should be a commitment to ensuring that the results of such work are fed back to clinicians and the public.

Jurors reported becoming more comfortable about the use of medical information without consent as the jury hearing progressed.  They attributed this to being more informed and being able to deliberate with others.  

The paper: Public good, personal privacy: a citizens' deliberation about using medical information for pharmacological research, by Dr Lianne Parkin and Professor Charlotte Paul, both of the Department of Preventive and Social Medicine Otago University Medical School, has been published in the UK in the Journal of Epidemiology and Community Health.

The work was undertaken as part of a joint initiative funded by the Health Research Council and Medsafe, Ministry of Health.