Skip to main content
Premium Trial:

Request an Annual Quote

Beyond GINA, States Build Patchwork of Protections

This article has been updated to clarify comments from Anya Prince of the Cancer Legal Resource Center. The article inaccurately cited Prince as stating that some states mandate coverage for BRCA testing. Prince was referring to mammograms, which have mandated coverage by some states, not BRCA tests, which do not.

NEW YORK (GenomeWeb News) – While the Genetic Information Nondiscrimination Act of 2008 was viewed by its supporters as a necessary measure to ensure that people are not treated unethically or unfairly based on their genetic makeup, there remains an uneven and changing legal landscape that shifts from state to state, and GINA itself has not yet been tested in the US courts.

One concern about GINA among its supporters has been that the two statutes that it contains cover only employment and health insurance, but it does not address other types of insurance, such as life, disability, and long-term care.

Many states, however, have enacted other statues that provide varying mixtures of protections from discrimination, creating different levels of legal protections on a state-to-state basis, Anya Prince, a fellow at the Cancer Legal Resource Center (CLRC), which tracks genetic discrimination laws, told GenomeWeb Daily News in an interview.

CLRC is a national joint program of the Disability Rights Legal Center and Loyola Law School of Los Angeles that provides information and resources on cancer and related legal issues to patients and families, and it is expanding its emphasis on genetics.

According to an analysis Prince conducted for the CLRC, 13 states have statutes for regulating the use of genetic information in life insurance, and 14 states regulate the use of genetic information in disability insurance. Eleven states also have adopted laws regulating against the use of genetic information in long-term care insurance.

Several states have laws that regulate all three of the above insurance types including Arizona, California, Maine, Massachusetts, New Mexico, New York, Oregon, and Vermont. A number of states also have one or two areas in which they regulate types of insurance beyond health insurance.

Twenty-seven states, however, have enacted no laws regulating the use of genetic information in any of those additional types of insurance, Prince found.

Having laws that regulate the use of genetic information in insurance is not the same thing as making that use illegal, Prince told GWDN.

"There are very few [states] that just ban the use of genetic information in those insurances overall. Some ban what they call 'unfair discrimination,'" she said.

In those states, Prince explained, the practical application for the law will come down to whether or not the insurance companies can show that they will incur a cost linked to the genetic information, meaning they have an actuarial justification for using the information.

"So you can use genetic information in those three types of insurances (life, disability, and long-term care), but only if you have actuarial justification – only if the insurance company can say 'This [genetic marker] is going to be an increased cost to us, because it is a predisposition for disease.'"

For example, even those states that say they are banning genetic discrimination for disability insurance might only be banning discrimination that is considered unfair or unjustified, Prince explained, while they allow for discrimination that is based on an actuarial justification.

Prince also said that many of these states may have different definitions for what constitutes genetic information, which could change how laws are applied and the protections they may afford.

Few Court Challenges to Test GINA

GINA has yet to be given a full trial run through the US courts, although it is not unexpected that the slow pacing of legal cases would require several years before the law is applied and tested.

Under the law's Title II statute, which covers discrimination in the workplace, people with a claim of genetic discrimination do not sue their employers, but rather file a claim with the US Equal Employment Opportunity Commission, which enforces Title II and other employment discrimination laws.

Title II prohibits the use of genetic information in making employment decisions and restricts employers from requesting, requiring, or purchasing genetic information. It also strictly limits the disclosure of genetic information.

When the EEOC receives a complaint filing, it will conduct an investigation, and, if it finds the plaintiff's complaint has merit, it will try to mediate between employer and the employee. If mediation fails, the EEOC will send the person a letter giving them the right to sue the employer in court.

Last year, the EEOC received 245 charges under GINA, up 35 from 2010, the first full year that the law was in place. The overwhelming majority of those were resolved either because the plaintiff was found to have no reasonable cause for the claim (68 percent of filings), or because settlements were reached (9 percent).

"There have been quite a few meritorious claims, and damages have been paid out through mediation," Prince told GWDN, explaining that much of the information related to those cases is not made public because of the terms of the mediation agreements.

She said that the EEOC is likely to choose to litigate cases that are "on the edge," or which have "a high impact" for laws such as GINA, because it wants to use them to "decide how disability is defined."

Currently, one employment-related genetic discrimination case is working its way through the courts. In that case, EEOC v. Nestle Prepared Foods, a former employee claims that the company fired him for spurious reasons one month after he took a company-ordered fitness exam and provided family history and genetics-related information.

Complaints filed under GINA's Title I, which covers health insurance discrimination, are overseen through individual states' departments of insurance, as each state is required to have a law that mirrors GINA.

Title I was created to dovetail with other nondiscrimination provisions under the Health Insurance Portability and Accountability Act to prohibit health insurers or health plan administrators from requesting or requiring genetic information of an individual or that person's family members, or using it to make decisions about coverage, rates, or preexisting conditions.

This statute does allow insurers and plan administrators to obtain and use genetic test information to make determinations about health insurance payments, however.

Prince said that each state may have different processes for enforcing Title I, with some enabling citizens to pursue a private right of action lawsuit and some requiring that complaints be handled by the state's department of insurance.

But, she noted, there is not "a seminal case in the insurance realm yet" to fully test GINA because of the various ways that the states are enforcing it.

Prince said it will take time for GINA cases to thread their way through the US courts and to begin to create a layer of jurisprudence that will inform future cases.

"One of the main points of GINA was to alleviate some of the fears of discrimination, and while there are still some gaps in GINA, and in the enforcement, I think it has helped to alleviate those fears," she said.

The next step for patients most interested in using genetic testing, she said, is to expand coverage for those tests.

Prince cited BRCA testing as one example of a preventive measure that she believes should receive wider insurance coverage. She noted that some states mandate that health insurance companies cover screenings such as mammograms, but not BRCA testing.

So though there are now protections in place for genetic information, the question remains, "How do we make sure that everybody has access to these preventive services, so that we really do see the public health benefits of genetic testing?" said Prince.

The Scan

Self-Reported Hearing Loss in Older Adults Begins Very Early in Life, Study Says

A JAMA Otolaryngology — Head & Neck Surgery study says polygenic risk scores associated with hearing loss in older adults is also associated with hearing decline in younger groups.

Genome-Wide Analysis Sheds Light on Genetics of ADHD

A genome-wide association study meta-analysis of attention-deficit hyperactivity disorder appearing in Nature Genetics links 76 genes to risk of having the disorder.

MicroRNA Cotargeting Linked to Lupus

A mouse-based study appearing in BMC Biology implicates two microRNAs with overlapping target sites in lupus.

Enzyme Involved in Lipid Metabolism Linked to Mutational Signatures

In Nature Genetics, a Wellcome Sanger Institute-led team found that APOBEC1 may contribute to the development of the SBS2 and SBS13 mutational signatures in the small intestine.