Gene test results to be passed on without consent

by jeeg 31. May 2012 20:55

PEOPLE tested for predisposition to a genetic disease will no longer have a say in whether their results are given to their close relatives, under proposed changes to NSW laws.

The NSW Health Minister, Jillian Skinner, has introduced legislation to allow doctors to inform a patient's blood relatives they are at risk of having or developing a serious illness. Such tests can be used to identify whether people are at increased risk of cancer or heart disease.

Professor Ron Trent, a genetics expert from the University of Sydney, said in most cases people were willing to share information with relatives, but some refused to disclose private information.

''That puts a doctor in an incredible dilemma of not being able to give a family member potentially life-saving information,'' he said.

Professor Trent said some cancers of the colon or the breast could be prevented with the benefit of genetic testing. He said doctors would only inform relatives in serious cases.

The newly elected president of the Australian Medical Association of NSW, Brian Owler, said the legislation was ''a reasonable approach to a difficult ethical problem''.

''There should be no requirement or coercion for a person to get genetic testing in the first place,'' Professor Owler said.

The Greens are calling for amendments to the bill to ensure the privacy of patients and their relatives who may not want to know they are at risk.

''Sharing of the results of genetic testing is a powerful public health tool that can help individuals take preventative actions to avoid life threatening and debilitating diseases,'' NSW Greens MP John Kaye said.

''However, it must be accompanied by gold-standard privacy protections. People seeking insurance should not be disadvantaged because their relative carries a genetic disorder.

''Without significant amendments to this legislation … there is a real risk that the benefits of genetic testing will be compromised by the impacts on privacy and access to insurance.''

Mrs Skinner said the changes were designed to bring NSW in line with the Commonwealth and other states.

''The bill recognises the sometimes competing interests between a patient's desire for privacy and confidentiality and a relative's possible need to be provided with important and possibly life-saving genetic information, by establishing an appropriate framework in respect of the use and disclosure of genetic information without consent,'' she said of the changes.

ANna Patty, Sydney Morning Herald

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