Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing

Singer, Eleanor; Antonucci, Toni C.; Hoewyk, John Van

doi:10.1089/109065704323016012

Cited by 153 publications

(164 citation statements)

References 20 publications

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“…In a national telephone survey that included 375 African Americans and 960 whites, African Americans were more likely than whites to indicate that they would want genetic testing for both "untreatable diseases" in general and Huntington disease specifically. 82 Similarly, a survey of 174 African Americans and 278 whites specifically focusing on attitudes toward predictive testing for AD found that African Americans expected fewer negative consequences from a positive genetic test result for AD than whites. 78 The REVEAL study will add to this literature with respect to predictive genetic testing for common, complex conditions.…”

Section: Discussionmentioning

confidence: 99%

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Christensen

Roberts

Royal

et al. 2008

Genetics in Medicine

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Purpose: To describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants. Methods: The following informed our decision whether to stratify risk assessment by ethnicity: evaluation of epidemiological data, appraisal of benefits and risks of incorporating ethnicity into calculations, and feasibility of creating ethnicityspecific risk curves. Once the decision was made, risk curves were created based on data from a large, diverse study of first-degree relatives of patients with Alzheimer disease. Results: Review of epidemiological data suggested notable differences in risk between African Americans and whites and that Apolipoprotein E genotype predicts risk in both groups. Discussions about the benefits and risks of stratified risk assessments reached consensus that estimates based on data from whites should not preclude enrolling African Americans, but population-specific risk curves should be created if feasible. Risk models specific to ethnicity, gender, and Apolipoprotein E genotype were subsequently developed for the randomized clinical trial that oversampled African Researchers are identifying a growing number of genetic markers that are associated with increased or decreased risk for common, complex diseases. Consequently, the development of genetic risk assessment and risk communication strategies are areas of critical importance, especially given that laypersons often have a difficult time in understanding probabilistic information. 1,2 Protocols for disclosing genetic information have been developed and refined for various forms of cancer, 3-6 but similar efforts have been made only recently for other diseases. 7,8 One area of recent focus is Alzheimer disease (AD).AD is the most common form of dementia among the elderly, affecting an estimated five million individuals in the United States. Well over 10 million Americans are expected to have the condition by 2050 as the population continues to age. 9 Many risk factors are well-characterized, including age and family history, 10 -14 whereas many others are under investigation, including education level, 15,16 head trauma, 17,18 high blood pressure, 19 caloric intake, and high cholesterol. 20,21 Regarding genetic factors, rare mutations on genes coding for amyloid precursor protein, presenilin 1, and presenilin 2 have been identified that are deterministic for early-onset AD. 22 Apolipoprotein E (APOE), in contrast, affects susceptibility to AD and has three major forms. APOE ⑀3, the most common allele, is found in over half the US population. The ⑀4 allele is associated with increased risk for AD whereas the ⑀2 allele has a protective effect. 23,24 The ⑀4 allele is neither necessary nor sufficient for AD though, and individuals with the ⑀2 allele still have risk for AD. APOE variants are also associated with other conditions such as hyperlipoproteinemia and atherosclerosis 25 and may play a role in the development of ma...

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Section: Discussionmentioning

confidence: 99%

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Christensen

Roberts

Royal

et al. 2008

Genetics in Medicine

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“…As such, our results may not be representative of the population of survivors and parents, and requires verification in a larger sample representing different cultural and religious groups. 31,32 As base knowledge of testing appeared low in this sample, participants may not have fully understood the implications of genetic testing for risk of late effects. Different types of genetic tests for different late effects (e.g.…”

Section: Limitationsmentioning

confidence: 89%

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Georgiou

Wakefield

McGill

et al. 2016

Cancer

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BACKGROUND Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2‐stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18‐39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10‐19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876–2885. © 2016 American Cancer Society

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“…A number of recent studies have begun to explore the potential impact of genetic knowledge on views regarding genetics and geneenvironment interactions (Christensen et al 2010;Jayaratne et al 2009;Singer et al 2004). One study for example found that African-American and Latino participants were less likely to utilize genetic services based on a lack of knowledge provided to them through their health care providers (Suther and Kiros 2009).…”

Section: Discussionmentioning

confidence: 99%

Gene–environment interactions and health inequalities: views of underserved communities

et al. 2013

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This article examines the beliefs and experiences of individuals living in underserved ethnically diverse communities in Cleveland, Ohio, regarding the influence of genetic, social, and environmental factors on health and health inequalities. Using a community-engaged methodological approach, 13 focus groups were conducted with African American, Hispanic, and White individuals residing in the Cleveland area to explore attitudes and beliefs about genetics, genetic research, and health disparities and inequalities. Results of this study highlight the range of meanings that individuals attach to genetic variation, genomic research, and gene-environment interactions, and their implications for addressing health inequalities. The majority of participants in all focus groups reported that social and environmental factors were more important than genetics in contributing to health inequalities. Most participants were unfamiliar with genetic research. These data have implications for how genetic information and research might be applied in conjunction with addressing social determinants of health to improve prevention strategies in underserved communities and ultimately reduce health inequalities.

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Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing

Cited by 153 publications

References 20 publications

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Genetic testing for the risk of developing late effects among survivors of childhood cancer: Consumer understanding, acceptance, and willingness to pay

Gene–environment interactions and health inequalities: views of underserved communities

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