Prior research has found race/ethnicity to be a powerful variable in explaining differences in how people view AD and genetic testing (Hipps et al. 2003
; Peters et al. 2004
; Thompson et al. 2003
); however, much of the literature relies on responses to hypothetical testing scenarios. This is one of the first reports to describe race group differences in the context of a “real-life” clinical trial offering genetic susceptibility testing to research volunteers. Our findings suggest race group differences in knowledge and perceptions of AD, perceived threat of developing AD, and reasons for and against seeking genetic susceptibility testing.
In our study, African Americans were less knowledgeable of established facts concerning AD and genetic testing in comparison to Whites, and these findings are consistent with similar research on other medical disorders. For example, previous studies on cancer and hypertension show that African Americans were less knowledgeable than Whites about risk factors, symptoms, causes, detection and treatment (Armstrong et al. 2002
). A number of factors (e.g. socioeconomic barriers, institutional racism, and mistrust of the medical system) may play a role in African Americans being less likely to access medical services, research opportunities and medical topics in the lay literature, thereby constraining awareness of information about AD (Connell et al. 2001
; Welsh et al. 1994
). There may also be less knowledge about AD among African Americans because more attention is paid to conditions such as diabetes and hypertension in the African American community, and educational efforts and programs may focus on these diseases rather than on AD. This lack of knowledge may cause African Americans to make decisions about genetic testing without full awareness of its benefits, limitations and potential risks. Recent research indicates that even though African Americans endorsed intentions to pursue genetic testing to a greater extent than Whites, they also shared beliefs that conflicted with this desire (Singer et al. 2004
). African Americans often express less confidence in American institutions and less trust in their doctors and health practitioners (Singer et al. 2004
). In any given situation, these sentiments may well override their desire for genetic testing.
Our results also suggest that African Americans are generally less concerned about the possibility of developing AD in comparison to their White counterparts. This lower level of concern is consistent with previous studies which have shown that African Americans perceive AD as a lesser threat than Whites (Roberts et al. 2003
), and that AD poses a lower personal burden to African American caregivers (Lawton et al. 1992
). Dementia may be considered a less fearful condition to African Americans for several reasons including: African Americans having greater access to extensive support networks (e.g., family, church), a greater reliance on assuaging coping methods such as prayer, an ability to adapt to adversity, a more positive outlook on aging, and a greater value placed on familial roles than on cognitive skills (Gallagher-Thompson et al. 2000
). These lower levels of concern about AD risk suggest that African Americans may anticipate fewer negative consequences regarding genetic testing that conveys personal risk for AD. Interestingly, Whites in this study greatly overestimated their lifetime risk of developing AD, a phenomenon that was not observed in African Americans. This biased view of personal risk may reflect Whites’ greater anxiety about the potential consequences of AD.
In examining reasons for and against pursuing genetic susceptibility testing, prior research on real-life “deterministic” DNA testing for early onset familial AD and frontotemporal dementia revealed that the most commonly endorsed reasons for seeking testing were for assistance with organizing family affairs, financial planning, anxiety relief, and other themes not directly related to medical care (Steinbart et al. 2001
). The present results similarly show that at-risk participants pursue susceptibility testing for practical, financial, familial and altruistic reasons. However, in this sample, the strongest reasons participants cited for pursuing susceptibility testing concerned medical treatment and prevention. These results may illustrate a societal shift from the fatalistic ideology that there is nothing that can be done about AD to a more proactive stance where people now believe there are, or will soon be, preventive measures and treatments to avert or delay the onset of this disease.
The findings also showed that on average, African Americans endorsed a similar number of reasons to pursue genetic testing as Whites. These results are inconsistent with those of other related studies where race group differences in attitudes toward genetic testing were evident (Hipps et al. 2003
). The present results may be attributed to the differential design and samples studied, as our study was querying a sample of African Americans already self-selected on the basis of initial interest in genetic testing (i.e., those skeptical of or negative toward genetic testing would likely not have been included in our sample). Studies in the breast cancer literature have documented higher levels of interest in undergoing genetic testing among African Americans compared to Whites; however these studies have also referenced lower levels of awareness of genetic testing among African Americans (Hughes et al. 1997
). Other studies have evaluated genetic testing intentions and have shown that knowledge and exposure to genetics is low among African Americans, whereas expectations about the benefits of genetic testing are high (Halbert et al. 2005
). The lower knowledge scores we observed may suggest that responses are being given by African Americans about genetic testing for AD with incomplete understanding of risks and benefits.
For example, a reason more commonly endorsed by African Americans is the need to confirm feelings of already developing AD, which medical research describes as “anticipatory dementia” or anxiety among asymptomatic first-degree relatives about developing the disorder (Cutler and Hodgson 1996
). Our findings extend similar research in this area and further illustrate that some people may pursue susceptibility testing not only to help in making practical decisions (e.g., arranging personal affairs), but also to answer questions of curiosity and to address fears and anxiety about developing this disease (Roberts et al. 2003
). In this sample, 43% of African Americans said that they pursued genetic testing in order to confirm feelings of already developing AD, in comparison to only 20% of Whites. Since APOE genotype cannot, in fact, provide such confirmation, this seemingly mistaken belief about the benefits of genetic susceptibility testing may cause African Americans to have higher expectations of this procedure that would not be fulfilled [Others (Hughes et al. 2003
) have also reported higher expectations about the positive outcomes of genetic testing among African American women]. The present finding also indicates that genetic testing protocols for AD will have to take into account the understandable, but potentially unfounded anxieties that participants who seek such services may display.
At the opposite end of the spectrum, only a small percentage of participants endorsed reasons not to pursue testing. This is an expected finding given this was a study of individuals who had proactively volunteered to be tested in a research protocol. Notwithstanding this bias, the item endorsed most frequently as a deterrent to testing (by approximately one quarter of the sample) was “the results could affect my health insurance,” with Whites significantly more likely to endorse this item than African Americans. It should be noted that these data were collected prior to 2008, when the Genetic Information Nondiscrimination Act (GINA) was signed into law, prohibiting discrimination by employers and health insurers based on genetic information (Hudson et al. 2008
). It remains to be seen what impact GINA will have on the provision of genetic susceptibility testing for AD, but our results suggest that Whites may be more concerned about the implications of this information on their insurance status, at least prior to formal education on this topic. Long term care coverage currently remains very expensive and if genetic testing for AD becomes more customary, insurance companies may attempt to protect themselves from adverse selection by requesting genetic information (Zick et al. 2005
These differences in attitudes towards genetic testing may represent differences in knowledge about genetic testing and related issues that were not accounted for by the brief measures used in this study. A recent public opinion survey suggested African Americans are in fact, more concerned about the possible misuses of genetic information and are more concerned about privacy with reference to the government (Singer et al. 2004
). A recent study in Detroit found that even among those with access to health care, African Americans were less likely to participate in a research project offering multiplex genetic susceptibility testing and education about risk of eight common health conditions (Hensley Alford et al. 2011
). Such findings suggest that awareness of the potential risks and limitations of genetic testing for AD may make reasons against seeking genetic testing among African Americans more pronounced.