Participation in genetic testing research varies by social group.
paper
Cited
Public
Unavailable
- Authors
- Hensley Alford, Sharon; McBride, Colleen M; Reid, Robert J; Larson, Eric B; Baxevanis, Andreas D; Brody, Lawrence C
- Year
- 2011
- Journal
- Public health genomics
- PMID
- 20299772
- DOI
- 10.1159/000294277
- PMCID
- PMC3214933
BACKGROUND: Advances in technology have made individual access to personal genetic information foreseeable in the near future. Policy makers and the media forecast that the ready availability of personal genetic profiles would benefit both the individual and the health care system by improving outcomes and decreasing cost. However, there is a significant gap between having access to genetic data and either wanting or understanding the information it provides. OBJECTIVE: Our primary aim was to evaluate, using a population-based sample of healthy adults, whether gender, race and education status influences interest and participation in a multiplex genetic susceptibility test. METHODS: Healthy, insured individuals, 25-40 years of age, were approached via a large, integrated health system in which primary and specialty care is available. Study participants were offered personalized genetic risk information on 8 common chronic health conditions. Social groups historically known not to participate in genetic research (men, African Americans and those from lower education neighborhoods) were oversampled. We describe the recruitment outcomes and testing decisions of these social groups. RESULTS: We found that even among those with access to health care, African Americans were less likely to participate in the multiplex genetic susceptibility test, while those from higher education neighborhoods were more likely to participate. CONCLUSIONS: Our results suggest that large social groups will likely be underrepresented in research in personalized genomics even when robust population-based recruitment strategies are employed.
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|---|---|---|
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | 2017 | 28240821 |
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|---|---|---|---|---|
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| Neighborhood Disadvantage and Genetic Testing Use Among a Nationally Representative Sample of US Adults. | Bather JR et al. | — | 2025 | → |
| Social vulnerability and genetic service utilization among unaffected BRIDGE trial patients with inherited cancer susceptibility. | Bather JR et al. | — | 2025 | → |
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| Utilizing peer educators to increase genetic testing for prostate cancer among black males: results of a randomized controlled trial. | Leader AE et al. | — | 2025 | → |
| Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients. | Hay JL et al. | — | 2024 | → |
| Public Health Genomics: Time to Sharpen the Focus. | McBride CM et al. | — | 2023 | → |
| Autism spectrum disorder symptom expression in individuals with 3q29 deletion syndrome. | Pollak RM et al. | — | 2022 | → |
| Comprehension of skin cancer genetic risk feedback in primary care patients. | Khan E et al. | — | 2022 | → |
| Equity in Genomic Medicine. | Halbert CH | — | 2022 | → |
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| Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women. | Kaphingst KA et al. | — | 2022 | → |
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| An Integrated Review of Hypertrophic Cardiomyopathy in Black Populations: Underrecognized and Understudied. | Arabadjian M et al. | — | 2021 | → |
| "Being proactive, not reactive": exploring perceptions of genetic testing among White, Latinx, and Pacific Islander Populations. | Chavez-Yenter D et al. | — | 2021 | → |
| Comparing models of delivery for cancer genetics services among patients receiving primary care who meet criteria for genetic evaluation in two healthcare systems: BRIDGE randomized controlled trial. | Kaphingst KA et al. | — | 2021 | → |
| Experiences of Latino Participants Receiving Neutral Genomic Screening Results: A Qualitative Study. | Cheema AW et al. | — | 2021 | → |
| First French study relative to preconception genetic testing: 1500 general population participants' opinion. | Bonneau V et al. | — | 2021 | → |
| Predictors of Population Awareness of Cancer Genetic Tests: Implications for Enhancing Equity in Engaging in Cancer Prevention and Precision Medicine. | Giri VN et al. | — | 2021 | → |
| Prevalence and incidence of postpartum depression and environmental factors: The IGEDEPP cohort. | Tebeka S et al. | — | 2021 | → |
| Delays in diagnosis of Duchenne muscular dystrophy: An evaluation of genotypic and sociodemographic factors. | Counterman KJ et al. | — | 2020 | → |
| Factors Associated with Declining to Participate in a Pediatric Oncology Next Generation Sequencing Study. | Howard Sharp KM et al. | — | 2020 | → |
| Roles of attitudes and injunctive norms in decisional conflict and disclosure following receipt of genome sequencing results. | Reid AE et al. | — | 2020 | → |
| Shortened consent forms for genome-wide sequencing: Parent and provider perspectives. | Hitchcock EC et al. | — | 2020 | → |
| The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies. | Fisher ER et al. | — | 2020 | → |
| A mixed-methods study of cultural beliefs about dementia and genetic testing among Mexicans and Mexican-Americans at-risk for autosomal dominant Alzheimer's disease. | Withers M et al. | — | 2019 | → |
| Cognitive and Affective Responses to Mass-media Based Genetic Risk Information in a Socio-demographically Diverse Sample of Smokers. | Waters EA et al. | — | 2019 | → |
| Psychosocial and Cultural Determinants of Interest and Uptake of Skin Cancer Genetic Testing in Diverse Primary Care. | Hay JL et al. | — | 2019 | → |
| Willingness to decrease mammogram frequency among women at low risk for hereditary breast cancer. | Guan Y et al. | — | 2019 | → |
| Associations of perceived norms with intentions to learn genomic sequencing results: Roles for attitudes and ambivalence. | Reid AE et al. | — | 2018 | → |
| Characteristics Of Likely Precision Medicine Initiative Participants Drawn From A Large Blood Donor Population. | Bloss CS et al. | — | 2018 | → |
| Perspectives of psychiatric investigators and IRB chairs regarding benefits of psychiatric genetics research. | Roberts LW et al. | — | 2018 | → |
| Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research. | Gehlert S et al. | — | 2018 | → |
| Views of the importance of psychiatric genetic research by potential volunteers from stakeholder groups. | Roberts LW et al. | — | 2018 | → |
| Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review. | Hann KEJ et al. | — | 2017 | → |
| Implementing an Internet-Delivered Skin Cancer Genetic Testing Intervention to Improve Sun Protection Behavior in a Diverse Population: Protocol for a Randomized Controlled Trial. | Hay JL et al. | — | 2017 | → |
| Interest in and reactions to genetic risk information: The role of implicit theories and self-affirmation. | Taber JM et al. | — | 2017 | → |
| Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study. | Cadigan RJ et al. | — | 2017 | → |
| Racial minority group interest in direct-to-consumer genetic testing: findings from the PGen study. | Landry L et al. | — | 2017 | → |
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | Dick DM et al. | — | 2017 | → |
| Translation and adaptation of skin cancer genomic risk education materials for implementation in primary care. | Rodríguez VM et al. | — | 2017 | → |
| Importance of race and ethnicity in individuals' use of and responses to genomic information. | Kaphingst KA et al. | — | 2016 | → |
| A new approach to assessing affect and the emotional implications of personal genomic testing for common disease risk. | O'Neill SC et al. | — | 2015 | → |
| Associations between self-referral and health behavior responses to genetic risk information. | Christensen KD et al. | — | 2015 | → |
| Effects of racial and ethnic group and health literacy on responses to genomic risk information in a medically underserved population. | Kaphingst KA et al. | — | 2015 | → |
| Information Avoidance Tendencies, Threat Management Resources, and Interest in Genetic Sequencing Feedback. | Taber JM et al. | — | 2015 | → |
| Living laboratory: whole-genome sequencing as a learning healthcare enterprise. | Angrist M et al. | — | 2015 | → |
| Perceived ambiguity as a barrier to intentions to learn genome sequencing results. | Taber JM et al. | — | 2015 | → |
| Promoting healthy dietary behaviour through personalised nutrition: technology push or technology pull? | Stewart-Knox B et al. | — | 2015 | → |
| The Challenges and Opportunities Associated with Sickle Cell Disease Prevention, Education, and Management. | Smith M et al. | — | 2015 | → |
| The impact of multiplex genetic testing on disease risk perceptions. | Shiloh S et al. | — | 2015 | → |
| A systematic review of the factors associated with interest in predictive genetic testing for obesity, type II diabetes and heart disease. | Collins J et al. | — | 2014 | → |
| Disentangling public participation in science and biomedicine. | Kelty C et al. | — | 2014 | → |
| Effects of undergoing multiplex genetic susceptibility testing on parent attitudes towards testing their children. | Madeo AC et al. | — | 2014 | → |
| Genetic research participation in a young adult community sample. | Storr CL et al. | — | 2014 | → |
| Public attitudes towards preventive genomics and personal interest in genetic testing to prevent disease: a survey study. | Vermeulen E et al. | — | 2014 | → |
| Segmenting by risk perceptions: predicting young adults' genetic-belief profiles with health and opinion-leader covariates. | Smith RA et al. | — | 2014 | → |
| The role of weight, race, and health care experiences in care use among young men and women. | Persky S et al. | — | 2014 | → |
| Associations between risk perceptions and worry about common diseases: a between- and within-subjects examination. | Shiloh S et al. | — | 2013 | → |
| Bumps along the translational pathway: anticipating uptake of tailored smoking cessation treatment. | Shields AE et al. | — | 2013 | → |
| Communicating genetic risk information for common disorders in the era of genomic medicine. | Lautenbach DM et al. | — | 2013 | → |
| Genetic susceptibility testing for chronic disease and intention for behavior change in healthy young adults. | Vassy JL et al. | — | 2013 | → |
| Judging risk for multiple diseases: the role of disease worry. | Senay I et al. | — | 2013 | → |
| Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. | Allyse M et al. | — | 2013 | → |
| On averages and peaks: how do people integrate attitudes about multiple diseases to reach a decision about multiplex genetic testing? | Shiloh S et al. | — | 2013 | → |
| Association between health-service use and multiplex genetic testing. | Reid RJ et al. | — | 2012 | → |
| Effect of survey instrument on participation in a follow-up study: a randomization study of a mailed questionnaire versus a computer-assisted telephone interview. | Rocheleau CM et al. | — | 2012 | → |
| Exploring dispositional tendencies to seek online information about direct-to-consumer genetic testing. | Paquin RS et al. | — | 2012 | → |
| Management of AIDS-associated Kaposi's sarcoma in Nigerian children: a case series and review of literature. | Ahmed A et al. | — | 2012 | → |
| Modelling decisions to undergo genetic testing for susceptibility to common health conditions: an ancillary study of the Multiplex Initiative. | Wade CH et al. | — | 2012 | → |
| Motivations and perceptions of early adopters of personalized genomics: perspectives from research participants. | Gollust SE et al. | — | 2012 | → |
| Patients' understanding of and responses to multiplex genetic susceptibility test results. | Kaphingst KA et al. | — | 2012 | → |
| Perception of direct-to-consumer genetic testing and direct-to-consumer advertising of genetic tests among members of a large managed care organization. | Rahm AK et al. | — | 2012 | → |
| Predictors of patient uptake of colorectal cancer gene environment risk assessment. | Hall MJ et al. | — | 2012 | → |
| Preferences among diseases on a genetic susceptibility test for common health conditions: an ancillary study of the multiplex initiative. | Wade CH et al. | — | 2012 | → |
| Public awareness and use of direct-to-consumer personal genomic tests from four state population-based surveys, and implications for clinical and public health practice. | Kolor K et al. | — | 2012 | → |
| Skin cancer concerns and genetic risk information-seeking in primary care. | Hay J et al. | — | 2012 | → |
| Differences between African American and White research volunteers in their attitudes, beliefs and knowledge regarding genetic testing for Alzheimer's disease. | Akinleye I et al. | — | 2011 | → |
| Direct-to-consumer personalized genomic testing. | Bloss CS et al. | — | 2011 | → |
| Genomic risk profiling: attitudes and use in personal and clinical care of primary care physicians who offer risk profiling. | Haga SB et al. | — | 2011 | → |
| Parents' attitudes toward pediatric genetic testing for common disease risk. | Tercyak KP et al. | — | 2011 | → |
| Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics. | Roberts JS et al. | — | 2011 | → |
| Consumers' use of web-based information and their decisions about multiplex genetic susceptibility testing. | Kaphingst KA et al. | — | 2010 | → |
| Preferences for genetic and behavioral health information: the impact of risk factors and disease attributions. | O'Neill SC et al. | — | 2010 | → |
| Regional differences in awareness and attitudes regarding genetic testing for disease risk and ancestry. | Jonassaint CR et al. | — | 2010 | → |