Health workers urge regulation of genetic discrimination

In Aotearoa New Zealand, life and health insurers can use genetic results legally to discriminate against applicants. Genetic discrimination is the unfair treatment of individuals based on their genetic information, such as their genetic predisposition to an inherited disease or condition.

The Universal Declaration on the Human Genome and Human Rights states “no one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity”.

That has led many countries to ban or restrict the use of genetic test results in insurance. For example, in 2017, Canada introduced a complete ban on the use of genetic test results to discriminate in any area, including insurance and employment. In 2019, the Australian life insurance industry introduced a five-year self-regulated moratorium on the use of genetic tests.

Aotearoa New Zealand has no restrictions in place, and has lagged behind the rest of the world, including those we would normally match ourselves to. New Zealand insurance companies have been silent on the topic, even though they are aware of the issue.

Over the past 30 years, we have seen the ability of increasing numbers of diseases being associated with a genetic component. Genetic testing to detect increased risk for cancer, cardiac, neurological and other conditions can save lives through early preventive interventions and/or improved targeted therapy. One example is for a condition such as inherited breast and ovarian cancer, where a single mutation in a BRCA1 or BRCA2 gene can run within families and predispose individuals to a high likelihood of developing cancer at a young age.

Early screening and detection, and prophylactic surgery, can dramatically reduce cancer risk, and will be lifesaving in most cases. This was popularised by the actor Angelina Jolie, who helped to raise awareness about the importance of genetic counselling and testing for individuals with a family history of cancer.

In Aoteoroa New Zealand, research led by Professor Parry Guilford from the University of Otago identified the genetic cause of gastric cancer that was present in a number of Māori families. He developed a genetic test to identify individuals who carry mutations in the CDH1 gene and have a high risk of developing gastric cancer and may benefit from preventive surgery or increased cancer screening.

This has recently gained significant attention by the story of the New Zealand singer Stan Walker and his whānau. He has been open about his journey to undergo surgery to remove his stomach, and treat the cancer. He has raised awareness of the disease, and now the genetic test of CDH1 is widely used around the world to test for and prevent the development of gastric cancer.

We have only heard anecdotal evidence from clinicians, researchers and consumers in New Zealand that genetic discrimination is an ongoing and significant problem but have never been sure of the extent of the problem. The professional guidelines used by genetic counsellors in New Zealand require that in discussion with individuals considering genetic testing that the implications for being declined insurance are included. We have heard that concerns about the potential for genetic discrimination has often led to withdrawal of individuals and whole families from genomic testing and research.

Insurance providers in New Zealand cannot make individuals undertake a genetic test. However, they can legally ask for and use previous genetic tests to determine whether they will provide insurance or determine premiums. If an applicant doesn’t disclose the result or even the fact that a test was taken, the insurer could void the policy for non-disclosure when a claim is later assessed.

There is considerable evidence internationally that 10-30 percent of individuals will decline medical genetic testing or participation in genomic research studies because of fears of genomic discrimination. If this is true, this is deeply disturbing evidence about the potential harm from the continued legality of genetic discrimination.

Our concern was that people who are at risk of genetic conditions may choose not to have a potentially lifesaving genetic test, and this may have serious long-term health impacts for them and their whānau. At the time of consenting for genetic testing, consumers need to be told about risks for insurance discrimination, and health professionals are given this task.

On that basis, we wished to carry out a study of New Zealand health professionals involved in genetic information to determine the extent of the problem. We administered an online survey to New Zealand health professionals who discuss genetic testing with patients, their experiences regarding the use of genetic test results in insurance and views on regulation.

This is the first dedicated study of the views and experiences of New Zealand health professionals about the use of genetic test results in insurance underwriting.

It found that New Zealanders are experiencing discrimination in insurance, and that fears of this discrimination are deterring people from having potentially life-saving genetic tests. Over half of respondents in our survey reported that patients sometimes or often delayed or refused genetic testing because of insurance concerns, confirming our fears about genetic discrimination. Health professionals are very concerned about the impact this is having on patients, and overwhelmingly believe government legislation is required to regulate this area.