Public Attitudes About Genetic Testing For Alzheimer’s Disease

Abstract

In a general population survey (N = 314), 79 percent of respondents stated that they would take a hypothetical genetic test to predict whether they will eventually develop Alzheimer's disease. The proportion fell to 45 percent for a "partially predictive" test (which had a one in ten chance of being incorrect). Inclination to obtain testing was similar across age groups. Respondents were willing to pay $324 for the completely predictive test. Respondents stated that if they tested positive, they would sign advance directives (84 percent), get their finances in order (74 percent), and purchase long-term care insurance (69 percent). Only a third of respondents expressed concern about confidentiality. The results suggest that people value genetic testingfor personal and financial reasons, but they also underscore the need to counsel potential recipients carefully about the accuracy and implications of test information.

To Know or Not to Know: An Update of the Literature on the Psychological and Behavioral Impact of Genetic Testing for Alzheimer Disease Risk

“…The desire for certainty is also reflected in the studies that measured interest in genetic testing or willingness to take a genetic test for AD. Studies found that the majority of participants would have testing if it was 100% accurate or fully predictive, while only a small number of participants would be interested in testing that was only partially accurate or predictive (Neumann et al, 2001;Hipps et al, 2003).…”

“…Three articles examined the attitudes of the general population to susceptibility testing fcir AD (Frost et al, 2001;Neumann et al, 2001;Hipps et al, 2003), and five studies assessed attitudes in individuals with a family history of AD (Cutler and Hodgson, 2003;Roberts et al, 2003;Bassett et al, 2004;Moscarillo et al, 2007;Christensen et al, 2011). Generally these attitudinal studies show high levels of interest in hypothetical testing for APOE; for example, Bassett et al (2004) found that 72% of individuals with a family history of AD would choose to have a genetic test if 1t was offered to them.…”

“…Also, level of interest in testing has been found to increase with the degree of certainty imparted by a hypothetical test. Specifically, in two studies of participants sampled from the community, 64°o (Hipps et al, 2003) and 79°•o (Neumann et al, 2001) would opt to have a fully predictive test for AD, while 30~o (Hipps et al, 2003) and 45°~ (Neumann et al, 2001) would be interested in a partially predictive test. Despite the interest shown in genetic testing for AD, it is important to note that interest may not necessarily translate to actual uptake in testing, as has been seen with predictive testing for Huntington's disease (Craufurd et al, 1989;Quaid and Morris, 1993).…”

Willingness to Pay for Genetic Testing for Alzheimer's Disease: A Measure of Personal Utility

“…In the area of Alzheimer's disease (AD), survey respondents have reported willingness to pay on average between $120 and $500 for predictive AD testing, depending upon the accuracy and prior risk conditions of hypothetical scenarios (Neumann et al, 2001(Neumann et al, , 2010. However, no studies have asked individuals about WTP for susceptibility genetic testing after they have demonstrated their interest and had an opportunity to value the experience by actually undergoing such testing.…”

Mapping public policy on genetics

“…In a recent general population survey, more than two-thirds of respondents stated that they would purchase long-term care insurance were they to learn from a completely predictive genetics test that they would contract Alzheimer's disease. 5 With regard to confidentiality, Congress adopted a provision, as part of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, prohibiting health insurers from using genetic information in making eligibility determinations. 6 However, to date the US Department of Health and Human Services' efforts to implement the HIPAA medical privacy and confidentiality provisions are confused and contentious.…”