Long-term care insurance provides cost assistance for those
who need caregiver support or help with daily living activities. Individuals
who are already sick often face challenges when purchasing long-term care
insurance, such as paying significantly higher premiums, or may be denied
coverage altogether. In April, the FDA approved direct-to-consumer testing to
assess genetic risk for 10 conditions, including Alzheimer’s disease. The
increased availability and affordability of genetic testing can help healthy
individuals to assess their risk of developing certain diseases, but may also
make it more difficult for them to access services like long-term care insurance.
The Wharton School’s Jean Lemair and Arupa Gangulay of the
Hospital of University of Pennsylvania recently sat down to analyze the
emotional and economic impact of genetic testing for disease risk, with a focus
on long-term care insurance. Throughout their conversation they explore several
big questions: What does the information these tests provide really mean? Will
people only buy long-term care insurance if they think they have higher risk of
certain diseases? Can insurers ask people if they took the test?
Lemair and Gangulay explain that if the only people who
purchase long-term care insurance are those with increased risk of disease, the
market won’t be sustainable. Without low-risk people in the pool, prices will
rise and many people who need long-term insurance will no longer be able to
afford it. In their words, genetic testing creates a dichotomy: “We want
insurance, but we cannot get insurance if we reveal why we want insurance.”
Furthermore, genetic testing for Alzheimer’s disease risk is
not highly predictive and results can be misleading, caution Lemair and
Gangulay. If a person discloses his increased risk of Alzheimer’s disease, he
may be denied long-term care insurance, even though he may never need assistance.
On the other hand, an individual who tests negative for a mutation may opt not
to purchase long-term care insurance. But just because she does not have
increased risk for Alzheimer’s disease, does not mean she won’t require
caregiver support due to another condition.
Ultimately, Lemair and Gangulay warn that a low-cost test
that predicts predisposition to expensive diseases creates a "perfect storm" for companies selling long-term care insurance and, in turn, the consumers who
You can listen to the podcast or read the transcript here.
Like the experts
interviewed in this podcast, the Norton & Elaine Sarnoff Center for Jewish
Genetics and the National Society of Genetic Counselors
caution that the health risk tests sold by 23andme provide incomplete – and
potentially misleading – information
and do not require genetic counseling, a vital part of the testing process.