State lawmakers are looking at a proposal that could prohibit insurers from rejecting life insurance applicants who know they have inherited genes that could lead to them developing serious health problems.
The proposal could encourage more people to participate in medical research studies and risk-screening programs and help high-risk clients get life insurance.
The proposal could also increase the odds that insurers will end up covering a much higher percentage of people who know they have a short life expectancy.
The Amyotrophic Lateral Sclerosis Association — the patient advocacy group that organized the famous ALS Ice Bucket Challenge awareness program — wants the National Council of Insurance Legislators to change its current Life Insurers' Use of Genetic Information model act.
Members of NCOIL, a group for state lawmakers with an interest in insurance, are talking about the genetic testing proposal this week in Chicago, at NCOIL's summer meeting.
The proposal: The original NCOIL draft would forbid a life insurer from rejecting an applicant "based solely" on an individual's or a family member's genetic information, and it would let an insurer request or obtain an applicant's existing genetic information.
The ALS Association wants to forbid a life insurer from requesting, obtaining or considering genetic information held outside the applicant's existing medical record.
The provision would exclude life insurer consideration of genetic information if an individual learned about having a gene for ALS or another dangerous condition through a research study or a direct-to-consumer screening test.
The ALS Association view: "Using genetic information against those who would otherwise be proactive about their health disincentivizes them from pursuing genetic testing, negating potential benefits to their own health, the health of family members, and to scientific discovery," according to a slide deck for a presentation that Alex Meixner, an ALS Association vice president, prepared for a presentation at NCOIL's Chicago meeting.
"If an individual had genetic testing privately, through a clinical trial, or a direct-to-consumer product, the insurer could ask if they have ever had genetic testing, and that information would have to be disclosed. This undermines patient privacy, preventative care, and scientific research."
Life insurers' view: Jill Rickard, a regional vice president with the American Council of Life Insurers, said at an NCOIL meeting in Charleston, South Carolina, in April that the issue is complicated and that a poorly designed genetic information underwriting law could increase the cost of life insurance and hurt life insurers' financial stability.
"Life insurers are in the business of issuing policies," Rickard said, according to NCOIL's draft meeting minutes. "We want to provide life insurance to as many people as possible, but we also want and need to price products accurately and make them affordable for all consumers."
A policy could stay in force for several decades, and an issuer cannot increase the premiums based on changes in an individual's health, Rickard said.
"If we don't have access to the same important medical information known by applicants, then insurers wouldn't be able to assume that the population that applies for coverage has the same risk as those who elect not to apply," Rickard said.
Over time, the gap between what the applicants know and what the insurers know could hurt both life insurers and the people who want life insurance, she said.
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