Genetic tests taken under pressure, survey finds
By Julie Robotham,
November 5, 2004

Some people who have been tested for hereditary diseases felt coerced into doing so by family members, insurance companies or mortgage lenders, the first national survey on the issue has found.

One in 15 of those who responded to the survey had had an unwanted gene test - mainly for blood or brain disorders or cancer - under pressure from others, said Kristine Barlow-Stewart, director of the Centre for Genetics Education in the NSW Department of Health.

"The majority [of pressured cases] were from other family members. People felt pressure to assist another family member, or there was pressure to have a test because it might show something about their own health," said Dr Barlow-Stewart, one of the study's co-ordinators.

But some had felt pushed into testing because insurance or loans would otherwise be denied to them or would be more expensive based on their family history of inherited disease. If they took the test and it was clear, then underwriters would consider them on normal terms. But people tested in the hope they could show they did not carry a rogue mutation might gain distressing knowledge they were unprepared for.

Advertisement"If there is a family history, insurance can be loaded so high the majority can't afford it," Dr Barlow-Stewart said. "In some cases [the loading] can be 300 per cent." Such financial pressure could push people towards tests.

Insurers are explicitly forbidden from demanding gene tests from applicants, though people who have had such a test may be bound to reveal its results under disclosure rules.

Around 1800 people in NSW took genetic disease tests in 2000 and numbers taking the tests are thought to be growing rapidly.

Dr Barlow-Stewart said there should be a moratorium on the use of genetic tests in insurance underwriting. Such a ban is in force in Britain.

The Australian Disability Discrimination Act allows insurers to load premiums based on actuarial statistics or other reliable data.

But Dr Barlow-Stewart said the links between genetic mutations and the onset of disease were still poorly understood.

"I don't think we have enough evidence now. I don't believe it gives a good assessment of risk," she said.

She will present the results - from the 760 people who visited genetics clinics around Australia because of a family history of disease - to the World Congress of Bioethics, hosted in Sydney next week by the University of NSW.

Investment and Financial Services Association (IFSA) statistics show there has been a large increase in the number of genetic tests considered by underwriters in applications for life, disability and other types of insurance. The number doubled from 117 in 2002 to 235 in 2004.

The most common test was for the treatable blood disorder hereditary haemochromatosis, but a high proportion of tests were for the serious brain disorder Huntington's disease or familial cancers of the breast, ovary or bowel.

Insurance was granted on standard terms in 24 per cent of those in whom an inherited disease risk was confirmed, while 38 per cent were accepted subject to a loading. But another 38 per cent were deferred or declined.

Graham Whittaker, from the Institute of Actuaries of Australia, said insurance principles with regard to genetic disease were well established and all decisions had to be approved by a company's chief underwriter, according to an industry code of practice. But he said, "there is a potential when there is a very unusual disease for risk assessments to be not as accurate as you would like".

 

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