By Dr.Fouzia Sadiq
My spouse and I had an appointment with a UK Highstreet bank earlier this year, for our mortgage application. The representative of the bank gave us an attractive offer and we agreed to the contract. The representative also suggested that we get a life insurance and critical cover. My spouse was not keen, but I agreed to another meeting to discuss my insurance options.
During that meeting, the bank representative asked me several questions including my family medical history. I disclosed my family history of cancer. This led to more questions. What type of cancer? Who had it? How old were they when they were diagnosed? What stage of cancer? I told the representative that my younger sister had colon cancer before she was 40 and that she passed away 5 years ago. This implied that I might have colon cancer running in my family and that I might be at higher risk. The representative then said that the critical illness cover was not available for me because of the insurance company’s policy and offered to send me a quote for life insurance only. After careful consideration, I decided not to purchase the life insurance policy that was offered to me.
That night, as I lay in bed, I couldn’t stop thinking about my conversation with the bank representative about my insurance policy. I was declined critical illness cover because my sister had died of colon cancer. The insurance company was rather intrusive. They asked me many questions, not because they cared about my health or well-being, but because they wanted to assess their business risk.
Health conditions in one’s close family members (parents, siblings) that may affect one’s eligibility for insurance policy include, but are not limited to, heart diseases, diabetes, certain cancers (such as colon, breast or ovarian), epilepsy, polycystic kidney diseases, multiple sclerosis, Huntington’s diseases, Parkinson’s disease, Alzheimer’s disease, motor neurone disease and so on.
Anyone with a family history of one of the conditions mentioned above may face higher premium or exclusions for critical illness cover. I felt angry and frustrated, as a scientist and a researcher who works with patients who suffer from Familial Hypercholesterolemia (FH), a genetic disorder that runs in the family. FH patients have very high levels of cholesterol and can die young due to heart disease if they are not diagnosed early or managed timely.
Personalised or precision or predictive medicine is a novel and promising approach in the medical field. Diagnostic tests and genetic tests results of individuals are used to provide them the most effective intervention. Personalised medicine therefore considerably improves the quality and outcomes of health care. Given the benefits of personalised medicine, researchers are dedicating their lives to genetically screen populations of different ethnic backgrounds so that everyone has access to this cutting-edge healthcare. This raises several ethical questions including the security of genomic data, discrimination based on genetic information and so on.
The international consortium of precision medicine believes in provision of more efficient and equitable healthcare along with economic development in healthcare sector.
Is genetic discrimination even legal? The legal status of genetic discrimination varies by country. In Australia, there is no law that prohibits insurers from requesting or using genetic information to determine premiums or coverage. In Canada, however, the genetic non-discrimination act (GNA) of 2017 protects individuals from being forced to disclose their genetic test results to insurers. The GNA also allows individuals to voluntarily share their prior genetic tests with insurers if the insurance policy is for more than 250 thousand dollars.
Interestingly, genetic discrimination by insurance providers is also banned in the UK. The members of the Association of British Insurers and the UK government have agreed on a code on genetic testing that binds insurance providers to treat applicants fairly and not insist them to take or provide genetic test results unless the policy is for more than 500 thousand pounds.
I should mention that the bank representative who suggested us to buy life insurance policy and later refused critical illness care, did not request me genetic tests results. Their questionnaire was enough to infer my genetics could be high risk for their business. How can one trust insurance companies and feel comfortable sharing one’s personal health data with the insurance provider after such an experience?
The issue of genetic discrimination affects various stakeholders in the healthcare sector, such as clinicians, researchers, patients, and policy makers. It is not only a matter of ethical concern, but also a barrier to the advancement of precision or predictive medicine which relies on clinical and genetic tests to tailor treatment to each patient.
How can we balance the benefits of personalised medicine with the risks of privacy breaches and discrimination? Several ethical, legal and social challenges pertaining to personalised medicine exist. Sensitive personal and genetic information can be compromised and used for discrimination and stigmatisation by insurers, or employers or other third parties. It is therefore imperative for every country to establish robust regulations to secure the genomic databases and ensure legal frameworks and policies to protect the healthcare rights of every citizen.
Public awareness about advantages and limitations linked to personalised medicine is also required. It is in their best interest to learn as early as possible if they have a faulty gene. The genetics test results can help them take pre-emptive measures and get treated timely.
Roll out of personalised medicine can also reduce the overall cost of healthcare in the long run. Studies related to genomes of patients with different diseases has paved the way to discovery of novel drugs and much better therapies thus reducing their risks from high to moderate or even low.
Would this convince insurance provider to revamp their risk assessment policies and make a shift in their financial incentives? The answer is perhaps yes. The robustness of the diagnostic test and assessments, and clear clinical guidelines may result in insurance providers adopting revised formulation of policies for providing medical coverage.
A coordinated effort, however, from all stakeholders to achieve full potential of precision medicine is required to see a positive impact on the policies of insurance providers. It may take a while, until then all stakeholders should actively promote the non-disclosure of genetic and life-threatening diseases to the insurance providers.
The writer is currently working as Director Research at Shifa Tameer-e-Millat University, Islamabad, Pakistan. Dr Sadiq worked at Imperial College London, UK for 15 years. Her brief biography is available through the link below:
https://orcid.org/0000-0001-9399-6078
