Despite protection from genetic discrimination, some patients face higher premiums

A recent study suggests that even with anti-discrimination legislation, genetic tests could affect insurance applications

Despite protection from genetic discrimination, some patients face higher premiums

A bill that seeks to prohibit discrimination in insurance coverage based on genetic test results is being deliberated on by Canadian legislators. However, a new study suggests that even if the bill is passed into law, insurers may still treat certain patients unfavourably using genetic testing.

Pediatric cardiologist Shubhayan Sanatani and several colleagues studied the effect of genetic testing on insurance premiums and applications, according to The Scientist. In the study published by the journal Circulation: Cardiovascular Genetics, they interviewed 202 North Americans who were either diagnosed with sudden arrhythmia death syndrome (SADS) – 73% of whom were diagnosed via a genetic screen – or were related to someone affected by the disease.

Among all the respondents, 39% reported an increase in their existing insurance premiums. Just over half reported applying for insurance just after getting diagnosed; 60% of such respondents said they were rejected.

The majority of the respondents were from the US, where they should have been protected by the 2008 Genetic Information Non-Discrimination Act (GINA). GINA prohibits employers from discriminating against employees or job applicants based on genetic information; it also bars health insurers from considering genetic information when making decisions on insurance eligibility or premiums.

While GINA didn’t cover instances of manifest disease – it does not protect patients already diagnosed with a certain disease through non-genetic criteria – the Affordable Care Act (ACA), enacted in 2010, filled that gap. Given the twin protections of GINA and the ACA, the US-based respondents should not have been rejected or had their premiums hiked.

Sanatani offered two possible explanations. First, the survey was based on interviews and self-reporting, so it could not definitively determine incidences of genetic discrimination. He also conceded that the alleged instances of insurance discrimination may have preceded GINA and/or the ACA.

Robert Green, a medical geneticist from Harvard, offered another explanation. “This paper... documented the very routine practice of underwriting based upon pre-existing medical conditions,” he told The Scientist. “Most of the respondents had a diagnosis of SADS, meaning they had syncope, fainting, or at least clear-cut EKG abnormalities. That is what insurance does when they underwrite.”

However, Sanatani believes that patients with rare conditions like SADS could be slipping through the cracks; they could be getting unfavourable treatment from insurers but not reporting it. “We often just sort of assume things are working fine because we haven’t heard any noise,” he said.

“I think people overestimate the protection power of GINA,” said New York University bioethicist Arthur Caplan, who suspects there are some incidences of US citizens facing discrimination in spite of GINA and the ACA. “I think you’ll find it’s hard to track this... I’m not sure that makes headlines.”

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