Are Genetic Discrimination Laws Up to the Task?

Lorelei E. Walker, BS; Mark A. Rothstein, JD


August 08, 2012

Editor's Note:
The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits discrimination in health coverage and employment on the basis of genetic information.[1] However, this law is limited in scope and may not provide the kind of protection that will ultimately be needed as genetic testing moves more into the mainstream of medical practice.

On behalf of Medscape, Lorelei E. Walker, BS, a graduate student at the University of Washington Center for Genomics and Healthcare Equality, interviewed Mark A. Rothstein, JD, Herbert F. Boehl Chair of Law and Medicine and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine, about the strengths and weaknesses of GINA and other genetic discrimination laws. Walker and Rothstein also discuss what changes might be needed to keep pace with the increased use of genetic testing in clinical practice.

Ms. Walker: Let's start with some background. What is the goal of GINA, and why should physicians be concerned about issues of genetic discrimination?

Mr. Rothstein: The purpose behind the enactment of GINA was not to combat a wave of genetic discrimination -- there never was a wave of genetic discrimination. The problem that GINA and other laws at the state level were enacted to address is that individuals who might benefit from genetic testing might be reluctant to do so because they are afraid of the consequences. The goal is to allay the fears of individuals about their ability to safely undergo genetic testing without any social consequences.

Physicians are the resource for patients on health-related issues, and that may include such topics as genetic discrimination. For example, if we can imagine a scenario that is going to become increasingly common -- say, a test before a prescribing medication to learn about pharmacogenomic factors -- individuals might ask, "I don't know whether I should be tested. Can I lose my job because of this? Can I lose my health insurance because of this?" Physicians need to have answers that patients can use in making up their minds about whether they want to undergo testing.

Ms. Walker: How effective do you think GINA is at protecting people from genetic discrimination?

Mr. Rothstein: I don't think it's very effective at all. First, GINA is very limited in scope. It only applies to health insurance and employment, but there are many other categories in which individuals might be subject to discrimination, including life insurance, disability insurance, and mortgage insurance. If the purpose is to allay people's fears, it isn't effective, because there are all these other ways in which people may be subject to discrimination.

The second problem with GINA is how genetic discrimination is defined. In lay terms, genetic discrimination often refers to differences in treatment on the basis of expressed genetic conditions, or phenotype. Such treatment might constitute unlawful disability discrimination or health status discrimination, but it is not genetic discrimination under GINA. Genetic discrimination under GINA means adverse treatment on the basis of genotype.

GINA protects against discrimination on the basis of genetic test results of a family member, the family history of the individual, and the genetic test results of the individual. But it doesn't include the health history of the individual, so it only protects individuals who are asymptomatic. Once you show symptoms, GINA offers you no protection.

Let's say I apply for an individual health insurance policy. If I have a genetic predisposition to prostate cancer, a family history of prostate cancer, or a brother who tested positive for a gene that increases the risk for prostate cancer, I couldn't be denied coverage under GINA. But if 2 years from now, I develop prostate cancer, does GINA protect me? No, because GINA applies only to people who are asymptomatic.

Another problem with GINA is in the employment setting. The law attempts to prevent discrimination by limiting the information that's available to employers. But there is no practical way to do this.

For example, under the Americans With Disabilities Act, after an individual is made a conditional offer of employment, the employer can say, "Your references check out, and you have just the background we want. I'm prepared to make you an offer to start August 1, but it's conditional on your getting approval on your medical examination." That's lawful. As a condition of employment, the employer could make an individual sign an authorization to turn over his or her health records to the medical examiner of the company.

However, there is no way to segregate genetic information from nongenetic information, because the broad definition of genetic information includes such things as family health history. This means that the custodians of the information -- physician offices, hospitals, and so on -- are just going to send everything. So if the employers are going to get genetic information anyway, that undermines the part of GINA dealing with the genetic information being used to discriminate in the employment setting.

To sum up, then, there are 2 main problems with GINA: It doesn't cover enough situations, and even when it does cover a situation -- for example, health insurance and employment -- it is not adequate.

Although GINA applies only to people who are asymptomatic, according to the Affordable Care Act, as of 2014 it will be unlawful for health insurers to discriminate on the basis of preexisting conditions, and they cannot cancel policies on the basis of manifesting a condition.[2] So it is healthcare reform, not genetic nondiscrimination statutes such as GINA, that is going to protect people in the health insurance context and ensure that they have access to healthcare even after they manifest symptoms of genetic-related conditions.

Ms. Walker: GINA does not apply to certain subgroups, such as employers with fewer than 15 employees, veterans obtaining healthcare through the Veterans Administration, federal employees enrolled in the Federal Employees Health Benefits Program, members of the military, and individuals using the Indian Health Service. What are the implications of these groups not being covered under GINA?

Mr. Rothstein: GINA is tied, in terms of jurisdiction, in the employment setting to Title VII of the Civil Rights Act of 1964. That's where the 15 or more employees and all those other limitations come in. But there may be protection for individuals under state law where GINA doesn't protect them.

In many states, for example, employment discrimination laws apply to individuals working for companies that employ fewer than 15 people -- in some states, it is 2 or more, in some it is 5 or more, in some it is 10 or more. So someone working for a small employer in one of those states may be protected against discrimination under state law.

Beyond that, the main reason that employers would be concerned about hiring people who are predisposed to certain genetic conditions is the fact that if they get sick, the health insurance is going to cost more, either on an individual or a group basis, and the employers are underwriting that cost. So the more that we have risk-sharing more broadly, such as in the Affordable Care Act, the more we eliminate incentives for employers to discriminate against individuals even if they could.

Ms. Walker: With this move to a risk-sharing model, do you foresee social discrimination against individuals or groups with genetic illnesses that are viewed as exorbitantly expensive to manage?

Mr. Rothstein: I have been concerned about individuals running into problems if they were considered to be more expensive to treat, or if their family members are more expensive to treat, because you have to consider family coverage under many group plans. But I hope this will dissipate when it becomes difficult, if not impossible, for insurers to change the conditions of coverage on the basis of an individual's health condition, whether predicted or already expressed.

Ms. Walker: Do you foresee a GINA 2.0 that would offer protection against genetic discrimination in life, disability, and long-term care insurance in the future?

Mr. Rothstein: I think enactment of these types of laws at the federal level is not on the horizon, but it might be at the state level; legislation has already been introduced in California that would do this.[3] Laws have been enacted in several other countries that deal with some of these other forms of insurance, but it is very difficult to predict when this might happen on a more global level. You're asking an industry to basically revamp its business model. I've worked with insurance companies for many years on this issue, and they are as dug in as you can imagine.

Ms. Walker: What are the key messages that people need to know about genetic discrimination and GINA?

Mr. Rothstein: GINA is a first step, but it is certainly not comprehensive. It doesn't provide a full range of protection, and it doesn't provide a full range of remedies.

But consider the circumstances. In 2008, GINA passed unanimously in the Senate and with only 1 "no" vote in the House, from Representative Ron Paul. You have to consider what kind of legislation we could expect with that sort of vote. I'm not sure we could get Congress to vote a resolution approving the concept of gravity with only 1 "no" vote.


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