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Your Genes Aren’t Covered for That

One Year Later, Gaps in Genetic Discrimination Legislation Reveal the Challenges Ahead

gel electrophoresis SOURCE: Wikimedia Commons/Mnolf Policy must protect not just genetic information itself, but also access to care that is critical for prevention, early detection, and treatment—and to the support systems that help individuals care for themselves and their families when serious illness strikes.

Last month, the Genetic Information Nondiscrimination Act, commonly known as GINA, went into effect, one year after President George W. Bush signed it into law. Millions of us could benefit from the information genetic testing reveals, and GINA aimed to assuage patients’ fears that a genetic test might come back to haunt us by prohibiting the use of that information to deny health insurance coverage or a job. Unfortunately, despite GINA’s important step forward, Americans’ already heightened job security and health care anxieties have intensified in the past year, during this economic downturn.

What GINA does not do is require insurers to pay for care that a genetic test indicates would clearly be beneficial.

Despite the significant protections offered by GINA, hailed at its passage as “the first civil rights legislation of the 21st century,” there are no comforting answers to such key questions as: If my genetic test reveals that I need preventive care or early treatment, who will pay for that care? If my health is at risk and I want to protect myself, could my genetic information be used to deny me life insurance, long-term care insurance, or disability insurance? Most patients today undergo genetic testing to learn their health risks, but economic risks also loom large. GINA’s passage has illuminated further the need to create policies that support people once illness strikes. First and foremost, Congress and the White House simply must succeed in current efforts to overhaul our system of health care and health insurance. At least as challenging is the need for an honest look at our country’s systems of disability insurance, long-term care insurance, and life insurance—the public and private support systems for individuals and families dealing with the financial impact of serious illness and death.

What GINA does not do is require insurers to pay for care that a genetic test indicates would clearly be beneficial. Thus, there are no guarantees that patients will be able to access or afford therapies and screenings that could reduce their risks. Without further reform efforts to ensure that preventive strategies are within reach, GINA’s protections from discrimination will ring hollow.

For example, BRCA genetic testing evaluates the risk of developing breast and ovarian cancer. A positive genetic test may lead a doctor to recommend that a patient increase the frequency of early surveillance such as mammography to heighten the chance of early detection, or take preventive drugs such as tamoxifen, or consider prophylactic removal of the breasts or ovaries. However, GINA does not require that insurers pay for the early intervention that genetic testing indicates is necessary. Policymakers must address this gap in protection for patients—made all the more glaring by protections GINA does afford—as part of the comprehensive health insurance reform efforts now underway.

Similarly, GINA doesn’t protect people from health insurance discrimination on the basis of their current health status, even when a patient’s health can be dramatically improved—and health care costs lessened—by early detection, treatment, and disease management. Consider the common genetic disease hemochromotosis: In this disease, iron levels in the blood build up, and, if left untreated, can cause damage to organs and organ failure. The disease often is diagnosed with the help of genetic testing. A classic scenario involves a patient who has no symptoms, but opts for a genetic test to determine his or her risk after a family member develops the disease. The test indicates a mutation in a key disease gene, leading to diagnostic testing which may, in turn, detect increased blood iron levels, the earliest stage of the disease. The good news in this case is that simple blood donation by the patient manages the disease: It’s an easy, cheap solution that prevents the real risk—organ failure—from occurring. The bad news is that some health insurers have balked at covering an individual once there is a “diagnosis,” no matter how early, and how symptom-free the stage. An insurer’s refusal to cover the individual creates incentives against undergoing beneficial testing that can lead to a very early diagnosis and improved health. This too must be fixed through health care reform.

Individuals considering genetic testing typically want to know about their health risks. But genetic information reveals personal financial risk as well. Knowing their chance of future illness allows individuals and families to prepare for the possibility of devastating financial losses due to the inability to work and loss of income from illness or death of a family’s wage-earner.

These are exactly the circumstances under which people may want to seek life insurance, disability insurance, or long-term care insurance policies. Disability insurance protects against loss of income, while long-term care insurance protects against the cost of services including medical care, psychological support, or assistance with daily living. Life insurance typically pays a sum of money upon the insured person’s death. These insurance markets differ in some ways from the health insurance market—in general, observers view these insurance protections as meeting needs that are less fundamental than health insurance. Consequently, they generally leave insurers in these markets alone to set premiums and eligibility as they see fit.

GINA does not prohibit an insurer’s use of genetic information in setting rates for life insurance, long-term care insurance, or disability insurance. But should insurers be allowed to deny people the protections of these forms of insurance based on their genetic risk? It is not a simple question. In recent years, Mark Rothstein of the University of Louisville and Susan Wolf of the University of Minnesota have lead efforts to explore policy approaches to this issue. No consensus has emerged, but a significant body of work has laid the foundation for building solutions.

Some states have begun addressing whether the use of genetic information ought to be permitted. As of this writing, 16 states regulate the use of genetic information in life insurance, 16 states regulate its use in disability insurance, and 10 states regulate the its use in long-term care insurance. Although state approaches vary widely, the number of states acting in this area clearly has increased in recent years and the number is likely to continue to climb.

It makes sense that when people learn of their increased health risks, they may be motivated to buy new insurance in preparing for the future. Insurers are concerned that if individuals set out to purchase insurance on the basis of genetic information that is known to them but cannot be known by or used by insurers, the underwriting process will be corrupted through what is referred to as “adverse selection.” In a 2005 study, Cathleen Zick of the University of Utah and Robert Green of Boston University found that patients who learned they had tested positive for a genetic mutation associated with an increased risk of Alzheimer disease were significantly more likely to purchase long-term care insurance than patients who either tested negative for the mutation or did not learn their genetic testing results. On the other hand, this group was not more likely to purchase disability, life, or health insurance. Alzheimer disease presents a special case in a number of ways: The large number of people affected, the huge costs associated with care, and the relative lack of impact on length of life all point to long-term care insurance as the most likely market affected by adverse selection. Other diseases with variable costs and prognoses are expected to affect purchasing behavior and insurance markets differently.

Regardless of the disease, genetic information (which includes a person’s family history) is very rarely, if ever, a perfect predictor of whether an individual will become sick, how sick they will become, or whether and how they will die. But policymakers are concerned that genetic information may be viewed as magically precise, and as such will be over-valued by insurers, compared with similar health issues or other risks without a known genetic basis. Even if the predictive value of genetic information and the relevance to future claims cost were high, many genetic diseases are treatable and their effects can be mitigated. Protecting people from the threat of having genetic information used against them could bring public health benefits by reassuring patients and encouraging more appropriate health care, prevention, and early treatment, allowing those with diseases and conditions to live productive and happy lives while mitigating the severity and costs of illness.

Of course, underwriting is and always has been built on the complicated process of meticulous risk classification. No doubt experts in these markets could design a system that takes into account genetic test results just as they take into account the imperfect predictive value of a person’s lifestyle or habits.

One possible starting point may be existing unfair trade practice laws in every state, which prohibit unfair discrimination and require actuarial justification for underwriting. However, it is clear that better enforcement of these laws would be necessary to ensure fairness. Ultimately, it is clear that, at this economically precarious time, policymakers must reexamine and improve existing private and public programs that provide support to individuals and families facing the fiscal impact of serious illness and death. These programs, including Social Security Disability Insurance, Supplemental Security Income, Workers Compensation, and a range of employer-based programs, need a fresh look.

In sum, GINA has not solved every issue related to genetic testing and health. But it has highlighted the urgency in finding our way forward. Reform efforts must protect not just genetic information itself, but also access both to the actual care that is critical for prevention, early detection, and treatment, and to the support systems that help individuals care for themselves and their families when serious illness strikes.

Susannah Baruch is the Law and Policy Director at the Genetics and Public Policy Center at Johns Hopkins University.

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