March 9, 2005 — According to a new study conducted by researchers at the University of Utah, Boston University and Duke University, those who tested positive for the presence of a specific allele of the Apolipoprotein E (APOE) gene, one of the risk factors for Alzheimer’s disease, were 5.76 times more likely to subsequently alter their long-term care insurance than those who did not receive the genotype disclosure.

The study, published in the March/April issue of Health Affairs, released today, revealed that almost 17 percent of the 148 healthy, cognitively normal individuals who tested positive subsequently changed their long-term care insurance coverage in the year after APOE disclosure, compared with approximately 2 percent of those who tested negative and 4 percent of those who did not receive APOE disclosure. However, there was little evidence of adverse selection in the health, life and disability insurance markets despite the fact that the sample consisted of highly motivated people, who all had a family history of Alzheimer’s disease and were highly educated.

Lead author on the study, Cathleen Zick, notes, “This was not a random sample, but, rather, a sample drawn from individuals who were known to have a high degree of awareness of Alzheimer’s, since one of the criteria for inclusion was that they had to have a parent or sibling with the disease.” Zick, chair of the University of Utah’s Department of Family and Consumer Studies and an expert on insurance behavior, points out, “The participants knew there is a genetic component to Alzheimer’s, but didn’t know if they had the marker. They knew that they could potentially end up with Alzheimer’s and subsequently have need for long-term care. But getting the genetic information changed their interest in purchasing long-term care insurance.”

The findings of the study are significant on a number of levels.

Alzheimer’s disease is responsible for the longest, most common and most costly long-term insurance claims. Four and a half million Americans now have Alzheimer’s, and the direct medical costs of caring for these patients are estimated to be as much as $100 billion per year. Costs are expected to rise in the future as it is estimated that 13.2 million people will have the disease by 2050.

The research is also important as genetic testing for susceptibility to adult-onset diseases like Alzheimer’s-and who should have access to genetic test results-has sparked debate in the public policy arena.

Insurers argue that if they do not have access to such data, those who know they have an increased risk for a serious adult-onset disease and want to use the services covered by long-term care insurance, will purchase more coverage at prices that are below an actuarially fair rate. Consumers and proponents of anti-genetic discrimination legislation argue that if genetic test results are shared with insurers, many consumers could be denied coverage or charged excessively high premiums. Consumers ask “we do not choose our genes, so why should we have to pay more, or be excluded?”

In addition, the study noted, “Our findings imply that the potential for adverse selection may vary considerably by insurance market, thus making it difficult to design a public policy that works well in all instances.”

Robert Cook-Deegan, one of the authors of the study notes, “The natural history of Alzheimer’s disease and the power of APOE testing to predict need for long-term care combine with a private, individual long-term care insurance market to create the ‘perfect storm’ for adverse selection.”

“Is long-term care insurance a right? Or is it an optional service some people can afford that we leave to the market?” asks Cook-Deegan, director of the Center for Genome Ethics, Law, and Policy at Duke University’s Institute for Genome Sciences and Policy. “The political system is struggling to make hard choices. A federal bill banning genetic discrimination passed the Senate unanimously last year and again last month, for example, and the President is poised to sign it; but action has stalled in the House. Congress may take an important step in the right direction, but the bill does not address long-term care insurance, which may be a more imminent and pervasive threat.”

Robert C. Green is a professor of neurology, genetics and epidemiology at Boston University’s Schools of Medicine and Public Health, and the principal investigator on the Risk Evaluation and Education for Alzheimer’s Disease (REVEAL) Study that provided the data for the current analysis. REVEAL is a randomized controlled trial evaluating the impact risk assessment with genetic disclosure for adult children of Alzheimer’s patients. Green notes, “This is the first study to show that receiving genetic risk information makes a difference in the way people purchase at least one type of insurance. This is one of many ways in which clinical information from the genetic revolution is going to impact the landscape of health care and health policy in coming years.”

Says Zick: “What’s becoming clear is that consumers’ reactions are likely to be specific to the type of genetic test and to the type of insurance in question. In the case of long-term care insurance, if policy makers decide it is a consumer’s right-then one solution is to mandate universal access to long-term care insurance. But if long term care insurance is viewed to simply be an option for protecting wealth for future generations, then, it is less clear what the government’s role should be in regulating this market and the flow of information between consumers and the insurance companies.”

The study was funded by grants from the National Human Genome Research Institute, the National Institute on Aging and the Alzheimer’s Association. Other researchers on the project included Charles Matthews, an associate at Boston Healthcare Associates; J. Scott Roberts, assistant professor in the Department of Neurology, Boston University School of Medicine; and Robert J. Pokorski, vice president of Worldwide Medical Research and Development in Stamford, Connecticut. The Health Affairs article can be accessed online at http://content.healthaffairs.org/cgi/content/abstract/24/2/483.