Perceptions of Familial Risk in those Seeking a Genetic Risk Assessment for Alzheimer's Disease

Abstract

Perceived risk is a complex concept that influences the genetic counseling process and can affect client coping and behavior. Although the association between family history and risk perception is well recognized in the literature, no studies have explored this relationship specifically in those seeking genetic susceptibility testing for a common chronic condition. REVEAL is a randomized trial assessing the impact of APOE disclosure and genetic risk assessment for Alzheimer's disease (AD). Using baseline REVEAL data, we hypothesized that there would be a significant association between the degree of AD family history and risk perception of AD, and that this relationship would be stronger in those who believed that genetics is a very important AD risk factor. In our sample of 293 participants, we found that a higher self-perceived risk of AD was associated with strength of family history of AD (p<0.001), belief in genetics as an important AD risk factor (p<0.001), being female (p<0.001) and being Caucasian (p=0.02). These results are the first to demonstrate the association between family history and risk perception in persons volunteering for genetic susceptibility testing for a common complex disease.

Perceptions of genetic research in three rural Appalachian Ohio communities

“…Such previous studies include evaluation of the thoughts and opinions about genetic testing in the Amish, which found that parents of children affected with a genetic disorder were interested in understanding the cause of the health problems and risk of recurrence (Brensinger et al 1995). Other studies have examined the perceptions and attitudes of genetics, genetic testing, and genomic information of those at high-risk for breast cancer and Alzheimer's disease, women who were offered prenatal testing, African-American and EuropeanAmerican populations, as well as medical professionals, and consumers of genetic services (Lobb et al 2006;Hiraki et al 2009;Hines-Martin et al 2004;Etchegary et al 2008;O'Daniel et al 2010;Hernandez et al 2006). Although thoughts about cancer and vaccines have been addressed in the Appalachian population (Hutson et al 2007;Hutson et al 2011;Dorgan et al 2009;Vanderpool et al 2010), the topic of genetic research studies has not.…”

The Influence of Psychosocial and Cognitive Factors on Perceived Threat of Alzheimer’s Disease

“…Hiraki and colleagues also found that strong beliefs about genetics as an important risk factor was associated with higher perceived risk of AD, and attributed this finding to the fact that genetic disease is often viewed among the public as more severe and uncontrollable. 26 …”

“…We were specifically interested in two main questions: 1) What are the significant psychosocial and cognitive factors associated with perceived AD threat?, and 2) Does family experience with AD moderate the relationship between cognitive factors and perceived threat? Based on prior research, we hypothesized that family experience with AD 13 , strong beliefs about genetic risk for AD 26 , higher levels of depressive symptoms 13,16 , poorer self-rated memory 15 , and lower objective cognitive functioning 13 , will be associated with higher perceived AD threat. Based on the results of the Suhr and Kinkela study, we expected to find significant moderating effects of family experience on the relationship between cognitive function and perceived AD threat (i.e., for those with family experience, lower objective cognitive function will be associated with greater perceived threat), and on the relationship between age group and perceived AD threat (i.e.…”

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

“…No studies were found that assessed risk perceptions following genetic testing for dominantly inherited AD, while five studies were identified that described risk perceptions following APOE testing (LaRusse et al, 2005;Marteau et al, 2005;LaRusse Eckert et al, 2006;Hiraki et al, 2009;Linnenbringer et al, 2010).…”

“…In a cross-sectional study of REVEAL II participants, individuals with more than one relative with AD had significantly higher risk perceptions than those with only one affected relative prior to testing (Hiraki et al, 2009). A strong belief in genetics as an AD risk factor was also found to be a significant predictor of higher perceived risk.…”