A call for changes to the Genetic Information Nondiscrimination Act

As we approach Rare Disease Day on Feb. 28, I find myself reflecting on the journey of my wife, Jill, with Huntington’s disease (HD) and the struggles that families affected by genetic conditions face. One issue I’m focused on is a critical gap in healthcare policy that continues to affect many at risk for genetic disorders, including HD.

The Genetic Information Nondiscrimination Act (GINA) of 2008 was a big step forward in protecting people from genetic discrimination. Title I of GINA prohibits group health plans from using genetic information to make decisions about premiums, requiring people to undergo genetic testing, and collecting genetic information for underwriting purposes. Title I expands on the genetic information nondiscrimination protections included in the Health Insurance Portability and Accountability Act of 1996.

Title II of GINA prohibits employers from using genetic information to make hiring, firing, job placement, or promotion decisions. This law has been crucial in encouraging at-risk individuals to undergo genetic testing and safeguarding the privacy of their genetic data.

However, GINA falls short in crucial areas. The law doesn’t cover life, disability, or long-term care insurance, leaving many HD families vulnerable and hesitant to pursue genetic testing. This gap in protection has far-reaching consequences. Many people, including some in our HD community, refuse genetic testing because they fear repercussions, such as insurance discrimination.

Unfortunately, this fear is not unfounded.

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An article published in 2010 in the American Journal of Medical Genetics Part B: Neuropsychiatric Genetics shares data collected from 433 people at risk for HD. Of those, 83 respondents “reported their genetic information was either accessed by insurance companies without their consent or was requested by an insurance company.”

I’ve known some people to resort to paying out of pocket for predictive genetic testing or even supplying false data to avoid potential discrimination. While a fear of discrimination is understandable, these kinds of measures not only affect an individual’s health, but they also can hinder HD research efforts and drug development.

Why genetic testing matters

Jill and I believe that if HD families could access genetic testing without fear of exclusion from life, disability, or long-term care insurance, it could revolutionize our approach to the disease. Being able to learn one’s genetic status without fear of repercussions would alleviate the daily worry that plagues many at-risk individuals.

At the moment, HD is classified as a rare disease — meaning fewer than 200,000 people in the U.S. live with it. However, if more people underwent genetic testing, it would likely result in more diagnoses. It’s possible that, if more people were officially classified as gene-positive, HD would no longer be considered a rare disease.

In turn, this shift could potentially attract more attention from pharmaceutical companies and policymakers. It’s the classic supply-and-demand mindset: Limited resources and market incentives often result in less focus on developing treatments for conditions affecting smaller populations.

It’s important to note that some progress has been made in addressing these concerns. For instance, in Australia, a moratorium has been enacted to provide some protection against genetic discrimination in life insurance. However, some Australians feel that the moratorium provides inadequate protection and that government legislation regulating life insurers’ use of genetic results is necessary.

In celebrating Rare Disease Day, let’s advocate for comprehensive genetic testing protections that extend to all types of insurance. This change could empower people to make informed health decisions, advance research, and ultimately improve outcomes for those affected by HD and other genetic conditions.

For insurers that do consider genetic results when making assessments, we ask that they also consider risk mitigation efforts, as many people with rare diseases take proactive steps to manage their health.

By addressing these insurance gaps, we can take a huge step toward building a more equitable and supportive healthcare system for all rare disease communities. Let’s work together to dispel the stigma associated with such genetic conditions as HD and create a future where genetic information is used to improve health outcomes — and not as a basis for discrimination.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.