The two sides of genetic testing

The prospect of disclosing genetic test results to insurers is putting Australians off having the tests. Is it time to change the system? Kirrilly Burton reports.

“AUSTRALIANS refused insurance because of poor genes” and “Insurance fears lead many to shun DNA tests” are two of the headlines inciting fear among Australians of genetic discrimination from health insurers.1 

The fear of being denied life insurance or being subjected to higher premiums based on disease risks identified by genetic tests is also driving some patients to forgo important genetic tests, potentially jeopardising their health, some experts say.  

But is this phenomenon real and, if so, are calls for non-disclosure of genetic test results by some experts the answer? 

Mark McCalister,* a 28-year-old Brisbane engineer, knows only too well that genetic testing can be a double-edged sword.  

“I’m not one to stick my head in the sand if there is a problem,” he says, but with a wife and three kids to support, and a family history of colorectal cancer, Mark did something out of character – he ignored his health to ensure financial security for his family.  

After successfully applying for life and increased income protection insurance in 2008, he declined genetic testing for colo­rectal cancer, believing a positive result would have compromise his insurance. 

In Australia, applicants for life, trauma, disability or sickness and accident insurance must disclose known and relevant information, including genetic test results and family history of disease.2

Based on that information, insurers can refuse an applicant’s cover or charge higher premiums.2

Eventually, Mark told his insurers that he was considering having genetic testing for colo­rectal cancer.   

While his life insurance remained valid, his income protection insurance was a different story. 

A letter from his insurer said he had failed to disclose on his application that he was considering seeking medical advice, treatment, tests or surgery in the future, and that his income protection cover would be cancelled unless he agreed to an exclusion of benefits payable for primary or metastatic cancer. 

“They tried to make out it was because I incorrectly filled out the form, but, really, the way I read it, they saw I might have this gene defect so they decided not to cover me,” Mark says. 

He isn’t alone. An Australian survey of 951 asymptomatic people who underwent genetic testing for a range of conditions from 1998 to 2003 verified 14 cases of genetic discrimination, mostly pertaining to life insurance.3  

In one case, a woman who tested positive to the BRCA1 breast and ovarian cancer mutation was denied both income protection and increased trauma cover.3

However, Margaret Otlowski, professor of law at the University of Tasmania and deputy director of the Centre for Law and Genetics in Tasmania, puts the issue into perspective.   

“It’s often said that fear about these issues is often greater than the issue itself, because in practice we are not finding that many cases of actual discrimination that is not warranted,” she says.

Shane Burdack, chairman of the Financial Services Council’s (FSC) Genetics Working Group, says soon-to-be-released FSC figures confirm that the majority of insurance applications involving positive genetic tests were successful.  

“The cases that make the press are the very few ones that either haven’t been handled well, or they are the conditions that are quite damning,” he says. 

He believes these cases are due to a lack of understanding by the public regarding the types of life insurance to which they are entitled, including death, total and permanent disability and disability income protection cover. 

“Insurers are legally able to discriminate, but the FSC position is that members are only able to discriminate based on disclosure and known evidence to ensure that insurers are able to keep the product being offered as available to as many members of the public as possible at an affordable rate,” he says.   

However, researcher Dr Louise Keogh of the Centre for Women’s Health, Gender and Society at the University of Melbourne, believes insurance implications are deterring some patients from undertaking valuable genetic screening tests. 

Her analysis of 106 participants from the Victorian Colorectal Cancer Family study found twice as many declined testing after being informed of possible insurance implications compared with people who weren’t informed.2

“There needs to be some change to the regulation to... stop this discrimination putting people off genetic testing,” she says.  

She believes Australia should adopt a UK-style system in which customers do not have to disclose adverse results of genetic tests for life, critical illness and income protection insurance.

The UK industry has also declared a moratorium on asking customers to disclose any predictive or diagnostic genetic test results acquired as part of clinical research, she says. 

In its current position statement in relation to life insurance, the Human Genetics Society of Australasia (HGSA) says that an individual has the “right ‘not to know’ their predictive genetic test result, if undertaken for the benefit of family members, for example”.4  

The HGSA is urging the insurance industry “to implement a moratorium on the use of predictive genetic information pending improved actuarial estimates of the impact of such information on adverse selection”.  

The FSC acknowledges the call for a moratorium, but says it is unnecessary as all working Australians are able to access life insurance cover without the need for underwriting through their compulsory superannuation fund. 

Associate Professor Kristine Barlow-Stewart, director of the Centre for Genetics Education at NSW Health, believes that, due to the difficulty in interpreting genetic test results, guidelines are needed before any new legislation is introduced. 

“I believe it’s too early to use some of the genetic tests… what I would like to see is a formal assessment of the genetic tests that meet that bar that could be used for underwriting risk assessments,” she says. 

For example, a “definitive” genetic test such as Huntington’s disease should be valid for underwriting purposes, but she believes genetic tests for hereditary nonpolyposis colorectal cancer and breast and ovarian cancer should not be used in risk assessments because evidence is still not certain regarding the meaning of a positive test result. 

For breast and ovarian cancer tests, the risk of developing the disease after a positive test result varies substantially from 40% to 80%, she explains. 

A spokesman for the Commonwealth Assistant Treasurer says genetic testing and insurance “is a matter which NHMRC is expected to discuss with the Financial Services Council at a meeting later this year”.

“NHMRC will work with the life insurance industry to resolve issues that arise from these deliberations.”

*Mark McCalister is a pseudonym. 

Genetic testing: Implications for GPs

GPs have a duty of care to inform patients about the insurance implications.

Failure to disclose these implications to patients could result in claims of negligence if insurance is later denied based on test results, according to Margaret Otolowski, professor of law at the University of Tasmania, who  is also deputy director of the Centre for Law and Genetics in Tasmania.


Useful resources: Genetics in Family Medicine: The Australian Handbook for General Practitioners is available at 

www.nhmrc.gov.au/_files_nhmrc/file/your_health/egenetics/GeneticsInFamilyMedicine_WEB.pdf

References: 

1. The Sydney Morning Herald; 10 March 2009. The New York Times; 24 February 2008. 

2. MJA 2009; 191:255-258.   www.mja.com.au/public/issues/191_05_070909/keo11470_fm.html

3. Genet Med 2009; 11:193-201. http://journals.lww.com/geneticsinmedicine/Abstract/2009/03000/Verification_of_consumers__experiences_and.8.aspx

4. https://www.hgsa.org.au/website/wp-content/