Orlando Sentinel: Legislators Must Balance Consumer and Market Needs on Genetic Testing Bill

They’ve become popular gifts on birthdays or holidays – the personal DNA testing kits that can tell you where your ancestors came from or even if you are predisposed to certain medical conditions.

But as testing companies such as 23andMe and Ancestory.com have become more prevalent, providing insights to millions of Americans on the secrets their DNA holds, there have growing concerns about the privacy of that data.

The issue is playing out again this year in the Florida Legislature, where lawmakers are considering bills on whether life, long-term and disability insurers should be allowed to use a person’s genetic testing results when writing a policy, and under what circumstances.

What’s clear is that state legislators should proceed cautiously, because in their effort to protect consumer privacy they could inadvertently cause marketplace imbalances that impact the availability and affordability of insurance policies for Florida consumers.

This is a complex subject. In the medical world, there are different types of genetic tests. Some are used to diagnose specific conditions. Others are used to detect gene mutations that could lead to disorders later in life. In the consumer world, there are kits to test your ancestry and even your risk of contracting certain diseases. But these consumer tests aren’t protected under federal health data privacy laws.

Health insurers are generally banned from using your genetic information when writing a policy. But in Florida, that ban does not apply to life, long-term and disability insurers.

During this year’s legislative session, a bill has quickly moved through the House that would prohibit life insurers from using a person’s genetic test results when writing a policy – period. Florida would be the first state with such a blanket ban. The idea might sound good but may carry unintended consequences.

For example, a person who’s had a genetic test and learned of a medical diagnosis might share it with their medical providers but not the life insurer writing them a policy. That creates an unlevel playing field in the exchange of information that could make the writing of life insurance policies far riskier and lead out-of-state residents with diagnoses to flock to Florida for coverage. If insurers become skittish and pull back on writing policies in the state, all Florida consumers will suffer through less access to good coverage and much higher prices for insurance.

A more balanced approach would be where life insurers could only use genetic test results in underwriting if they are part of a person’s medical record. The bill would also require the direct-to-consumer DNA testing companies to obtain written permission from the consumer before sharing any of their test results with an insurer. This is an important consumer protection.

Consumers shouldn’t have to worry that if they give a DNA sample to a testing company to explore their ancestry, it could someday be used against them. But if they have a health condition or are predisposed to one that is part of their medical record, life insurers should be able to evaluate that as part of the whole medical record. As legislators work through this brave new world of widely available genetic testing, let’s hope their solution strikes a balance on what’s best for all Florida consumers.

You can read this in the Orlando Sentinel.

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