Joondalup Community Supports Family Health Study

December 16th, 2005 - Media Statement

A survey of more than 1,200 residents in the City of Joondalup has indicated overwhelming community support for a proposed Family Health Study in the area.

The initiative, being considered by leading Western Australian medical researchers, would be a long-term health study of people living in the Joondalup area.

The proposed 'Joondalup Family Health Study' would be a modern version of the highly successful Busselton Health Study which has been ongoing since 1966, and would aim to aid research into the causes, treatment and prevention of many common diseases such as cancer, heart disease, asthma, obesity and diabetes.

If the study went ahead, it would be led by University of Western Australia (UWA) Professor Lyle Palmer from the Western Australian Institute for Medical Research (WAIMR).

Professor Palmer said as part of a process of community engagement, a random selection of 7,500 Joondalup residents were recently surveyed about the proposed study. More than 16 per cent of those (1,210 people) responded to the survey.

"Analysis reveals there is overwhelming community support for this initiative - with 96 per cent of those surveyed believing it was very or quite important to conduct large-scale family health studies and 85 per cent of residents stating they were very or quite interested in participating in a Joondalup Family Health Study," said Professor Palmer.

"On top of this, 85 per cent of parents were very or quite likely to allow their children to participate, and most people expected the benefits of the study to be realized more by later generations, but also quite strongly by themselves."

The survey showed the main motivating factors for people to take part included regular free health testing offered by the Study, and the potential to contribute to the formation of new cures, treatments and screening techniques for diseases and medical conditions, as well as aid the long-term efficiency of the health system.

"The creation of a strong and trusting partnership with the City of Joondalup community is crucial, so we'll continue to spend considerable time talking with locals, however the results of our initial survey are very encouraging, and it looks like we are on track," Professor Palmer said.

"We understand this to be the most extensive program of community outreach ever conducted for any medical research study in the world."

All adults and children over six years of age who volunteered for the Study would be asked to supply information about their lifestyle and diet, basic measurements like height and weight, undergo health checks including eye, heart and lung function and provide a blood sample. Further surveys would likely take place every three years.

Professor Palmer pointed out that while Joondalup study volunteers would be able to choose whether or not they want to be told about any health results, such as blood pressure and lung function, they would not be given any genetic data.

Despite this, he believed new reforms just adopted by the Federal Government to address genetic privacy concerns were likely to further increase public support for the Joondalup Family Health Study.

"There are no unique privacy issues with this Study - as always, all information will be protected by strict Commonwealth laws and stringent ethics guidelines - however, newly adopted recommendations making it illegal for employers to discriminate against people on the basis of their genetic makeup now add a further level of protection," he said.

Other recommendations adopted will make non-consensual genetic testing an offence. The Government has also supported recommendations for increasing the regulation of the use of genetic test information for life insurance. In addition, the Government has agreed to the establishment of a Human Genetics Advisory Committee to have oversight of this area. The recommendations were part of a review into genetic privacy issues carried out by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) of the National Health and Medical Research Council (NHMRC) regarding genetic privacy issues contained in their major (1,200 page) Report, Essentially Yours.

Margaret Otlowski, Professor of Law at the University of Tasmania and Deputy Director of the Centre for Law and Genetics, was one of the expert panellists at the Joondalup Family Health Study Community Forum held last Saturday, December 10th. She was also one of the consultants to the ALRC/AHEC review that the Federal Government has just responded to.

"Under existing legal and ethical regulation there was already a high level of protection for medical research data - including genetic data - precluding unauthorised disclosure to any third party. Further, pursuant to the principle of 'community rating' under national health legislation, genetic data was already excluded from consideration for health insurance. With these new measures, Australia will become a world leader with regard to legal protections for genetic privacy," said Professor Otlowski.

Dr Fiona Wood, current Australian of the Year, gave the keynote address at last weekend's Forum.

"WA excels at medical research, and the planned Joondalup Family Health Study is an important new initiative likely to provide better health outcomes for chronic diseases conditions such as asthma and heart disease. This study will also help translate research findings to the bedside," Dr Wood said.

The proposed Joondalup Family Health Study is an initiative of WAIMR, UWA, Edith Cowan University, the Lions Eye Institute (LEI), the Women's and Infant's Research Foundation, and other academic, government and hospital partners.

It has also been endorsed by many WA health groups, including the Health Department of WA, the Australian Medical Association (WA Branch), Diabetes Australia (WA Branch), the Busselton Population Medical Research Foundation, the Cancer Council of WA, the Blind Association of WA, the Lion's Ear and Hearing Institute, and Sleep Disorders Australia (WA Branch).

Local endorsements have come from the Joondalup Health Campus, the City of Joondalup Council, Moore Federal MP, Dr Mal Washer, and Joondalup MLA, Mr Tony O'Gorman.

For more information please contact:
Natalie Papadopoulos
Media Consultant for the WA Institute for Medical Research
Mobile: 0407 984 435