Genetic details safe in biobanks
New guidelines released today call for stricter controls on how human genetic samples and information is used for medical research in Western Australia.
Western Australian Department of Health Guidelines for Human Biobanks, Genetic Research Databases and Associated Data offers, for the first time, a comprehensive ethical and practical framework for local researchers in the genetic field.
Director of the Office of Population Health Genomics, Dr Peter O'Leary said the guidelines would strengthen WA’s position as an innovative leader in genetic research and data linkage, and would provide confidence that individual rights are being protected.
A biobank is an organised collection of human biological material, and any related information, stored for research purposes.
"Research involving human genetic information, analysed along with other health information, has become increasingly important to understand the risk factors which contribute to complex diseases," Dr O'Leary said.
"It has led to improvements in detection, prevention, diagnosis, and treatment of illnesses, such as asthma, heart disease and cancer, which affect the lives of many Western Australians each year."
"It is clear however that access to this important information must be balanced by the interests of the people who participate."
Dr O'Leary said WA currently had about 100 biobanks, which were valuable resources for health and medical research.
Despite their success, researchers and members of the community agreed that there needs to be a greater openness about the research being undertaken.
"These new guidelines have been developed after wide consultation with professional experts and community groups to consider potential issues arising from the storage of human tissue samples in biobanks such as, privacy, governance, commercial use and communication with participants," Dr O'Leary said.
Dr O'Leary said it is important that the community and biobank participants were informed about how information was being used for research.
"The community consultation was an important part of the development process," he said.
"A range of protective measures are already in place in WA but these guidelines will go even further to assure individuals that their personal details are protected and that biospecimens held in biobanks are independently monitored."
Dr O'Leary said the guidelines would be used by organisations and researchers to assist in the management and use of all human biobanks within WA Health and would be useful to universities and research institutions across the State.
"WA has an excellent record in medical research and this is an important step which will benefit those who work in research and to the whole community," he said.
Personal health information is securely stored; access is limited to authorised, qualified staff and its use is subject to a range of approvals and privacy controls.
Researchers must follow strict conditions to keep personal information confidential and all data published in reports are de-identified and cannot be matched to individuals or small groups.
For more information about the Biobanks Guidelines please go to www.genomics.health.wa.gov.au or telephone the Office of Population Health Genomics on (08) 9222 6888.
The guidelines will officially be launched at a human genetic symposium, attended by some of WA's leading researchers and clinicians, today.
Media contact: (08) 9222 4333
