The Hidden Cost of Genetic Discrimination in Healthcare

Whether health insurance is a human right or a human privilege has been an ongoing debated issue. From an ethical perspective, people see healthcare as an essential component of human dignity and equality and believe that regardless of an individual’s socioeconomic status, everyone should have access to healthcare. Investing in healthcare also benefits the whole well-being of the population. 

On the contrary, healthcare is also seen as a resource that is limited and people believe that individuals should be responsible enough to take measures to maintain their health. People argue that healthcare should be “earned” instead of being “granted” by it being labelled a “human right.” The World Health Organisation advocated for every individual to have health coverage and essential health services without worrying about the financial burden. 

In India, according to data from the Niti Aayog Report, the health insurance schemes available can cover 95 crores of individuals, while over 40 crore individuals are devoid of health insurance. 

The public healthcare system has been undergoing insufficient and inadequate financial resources causing the majority of our population to purchase coverage from private insurance providers. Due to rising healthcare costs, having health insurance coverage has become more of a luxury rather than a necessity, when in reality healthcare coverage is a necessity in life. 

For the disorders that aren’t included health insurance providers have the freedom to outright reject the person’s application, charge a higher premium, or prolong the waiting period during which no coverage is provided for treatments. How do these health insurance providers justify taking such actions? They say these individuals impose a higher financial strain as they have regular hospitalisation or treatments. However, one must question, “Shouldn’t health insurance be a human right?”

Individuals with pre-existing disorders such as genetic blood disorders implement a “higher risk” for insurance providers, leading to genetic discrimination within health insurance schemes. Individuals with genetic blood disorders aren't the only ones excluded from health insurance in India, the majority of the disabled population in India still does not receive affordable healthcare services. 

Speaking from personal experience, my parents recently made me get tests done for life insurance. However, my sister wasn’t coming to get the tests done so when I asked why, my parents said she was “ineligible” for life insurance due to her having Major Thalassemia- a genetic blood disorder. I was extremely disappointed and honestly disheartened realising that basic policies and facilities are denied to humans who didn’t choose to have such disorders. It’s perplexing that one member of a family, who is already navigating the challenges of a genetic blood disorder, is once again excluded from what should be a fundamental human right. It’s even more upsetting that this isn’t talked about and is overlooked even though an unimaginable amount of people go through this.

Although the Delhi High Court announced that insurance policies and products should allow disabled people to receive health insurance coverage, discrimination persists.  How can the difficulties faced by those with blood disorders and disabilities be addressed and resolved until a broader sense of the issue is understood?