Utilization of conjoint analysis to elicit preferences for genetic testing for Alzheimer's disease
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Alzheimer’s disease (AD) was the seventh-leading cause of death in the US in 2006. With the advent of predictive genetic tests, people will have the option to investigate their future risk of developing diseases like AD. This knowledge can benefit people as they can start to prepare themselves as well as their families. In order to align the clinical practice of using predictive AD genetic with patient values and preferences, this study was conducted to estimate societal preferences and perceived values placed on AD genetic tests. This study also evaluated public awareness of the Genetic Information Nondiscrimination Act (GINA) of 2008 which prohibits genetic discrimination in health insurance and employment. Consumers need to understand GINA so they can take advantage of the protections it provides against genetic discrimination. An anonymous online survey was distributed by Qualtrics® to a general population panel aged 18-64 in April 2011. The 17 item survey included a rating conjoint analysis to assess public preferences for AD genetic testing and two multiple choice questions to measure public awareness and knowledge of GINA. A total of 295 responses were collected over four days. On average, respondents placed more importance on predictive accuracy than either treatment availability or result anonymity. Even without a cure for AD, people still placed a high preference on a predictive test with a 100% predictive value, and were still willing to pay for it. These results suggest that patients find value in having a reasonable estimate regarding their future chance of developing AD, even without a treatment. Value may arise from having an opportunity to make informed future plans or from a reduction in uncertainty. Four groups with differing attribute importance patterns were identified using cluster analysis. Twenty-six respondents indicated they had ever heard of GINA and only 10 people could correctly identify that GINA 2008 prohibits the improper use of genetic information in health insurance and employment. Three years after GINA 2008 was signed, public awareness of this law is low. More effective dissemination of information related to this federal law may be required to improve protection against genetic discrimination.