Bill never thought that a random telephone conversation with his brother would turn his life upside down. Four years ago, during the usual conversation, his brother announced his diagnosis of lateral amyotrophic sclerosis (BAS). The family had always considered it a simple coincidence that Bill’s father and grandfather had suffered from this disease. It turned out that the reason lay in a hereditary genetic mutation.
The BAS specialist sent Bill for a DNA test. While awaiting the results, Bill decided to take out long-term insurance. He reasoned that if he were to someday fall ill with BAS, he would not want the costs of necessary medical care to burden the family budget significantly.
After the mutation was discovered, Bill truthfully informed the insurance agent about it. The response he received was disappointing: “I do not think you will be approved for insurance.” Meanwhile, the healthy 60-year-old man spends his weekends constructing his dream home with his own hands.
A recent study revealed that such a genetic mutation increases the likelihood of developing BAS by an average of 25%. While most cases of the disease are not hereditary, Bill reacted as if he were already sick.
Similar situations in the United States are legal. Gaps in legislation regarding non-discrimination based on genetic characteristics allow life, long-term care, and disability insurance companies to require the disclosure of genetic risk factors from customers. Based on this information, companies may deny coverage or raise policy costs.
Information on genetic characteristics can come from a test or popular services like 23andMe prescribed by a doctor. Dozens of cases have already been documented by patient advocacy groups and social networks.
Lisa Schlager, Vice President of Public Policy at the FORCE Support Group, which addresses hereditary forms of cancer, is compiling reports of discrimination in insurance. Currently, the database contains about 40 cases.
Among the victims is a man with Lynch syndrome, which increases the risk of several types of cancer. Not only was his insurance premium raised and coverage reduced, but other insurers also refused policies. In 2013, 42-year-old Kelly Kashmer was denied life insurance after a malicious version of the BRCA2 gene was detected.
For some genetically determined diseases like Huntington’s disease, knowledge of the presence of a harmful mutation does not prevent potential disease development. However