Dataset Information

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

ABSTRACT: Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study (n = 960), Framingham Heart Study (n = 955), and Framingham Heart Study-Omni Cohort (n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3-5/5). Participants were also asked to select words to describe their attitudes toward genetics. More respondents endorsed the positive words "hopeful" (60%-70%), "optimistic" (44%-64%), "enthusiastic" (35%-43%), or "excited" (28%-30%) than the negative words "cautious" (35%-38%), "concerned" (25%-55%), "worried" (6%-13%), "pessimistic" (2%-5%), or "horrified" (1%-5%). Characteristics associated with favorable attitudes were greater genetics knowledge, higher subjective numeracy, experience with genetic testing, less frequent religious attendance, and not being employed. These findings demonstrate variation in attitudes even among participants in long-standing cohort studies, indicating a need for ongoing participant engagement and education.

SUBMITTER: Saylor KW

PROVIDER: S-EPMC6565476 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

Saylor Katherine W KW Ekunwe Lynette L Antoine-LaVigne Donna D Sellers Deborah E DE McGraw Sarah S Levy Daniel D Splansky Greta Lee GL Joffe Steven S

Journal of empirical research on human research ethics : JERHRE 20190508 3

Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study (n = 960), Framingham Heart Study (n = 955), and Framingham Heart Study-Omni Cohort (n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3 ...[more]

PMID: 31068049

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Project description:BackgroundRemnant lipoproteins (RLPs), the triglyceride-enriched precursors to low-density lipoprotein, are an emerging risk factor for coronary heart disease (CHD). We sought to determine the association of RLP cholesterol (RLP-C) levels with incident CHD in 2 diverse, prospective, longitudinal observational US cohorts.Methods and resultsWe analyzed cholesterol levels from serum lipoprotein samples separated via density gradient ultracentrifugation in 4114 US black participants (mean age 53.8 years, 64% women) from the Jackson Heart Study and a random sample of 818 predominantly white participants (mean age 57.3 years, 52% women) from the Framingham Offspring Cohort Study. Multivariable-adjusted hazard ratios (HRs) for RLP-C (the sum of very low-density lipoprotein3 cholesterol and intermediate-density lipoprotein cholesterol) were derived to estimate associations with incident CHD events consisting of myocardial infarction, CHD death, and revascularizations for each cohort separately and as a combined population. There were 146 CHD events in the combined population. After adjustments for age, sex, body mass index, smoking, blood pressure, diabetes, and lipid-lowering therapy for the combined population, RLP-C (HR 1.23 per 1-SD increase, 95% CI 1.06-1.42, P<0.01) and intermediate-density lipoprotein cholesterol (HR 1.26 per 1-SD increase, 95% CI 1.08-1.47, P<0.01) predicted CHD during an 8-year follow-up. Associations were attenuated by high-density lipoprotein cholesterol and ultimately lost significance with inclusion of real low-density lipoprotein cholesterol, which excludes Lp(a) and IDL cholesterol fractions. Similar associations were seen in multivariable analyses within each cohort.ConclusionRLP-C levels are predictive of incident CHD in this diverse group of primary prevention subjects. Interventions aimed at reducing RLP-C to prevent CHD warrant further intensive investigation.Clinical trial registrationURL: http://www.ClinicalTrials.gov. Unique identifier: NCT00415415.

Project description:The use of predictive genetic testing, particularly for risk profiling in non-communicable diseases (NCDs), has the potential to benefit public health by decreasing the disease burden and alleviating the pressure on healthcare. It is thus important to assess knowledge and uptake among stakeholders. This study aimed to assess end users' (community, medical practitioners and medical students) knowledge and attitudes regarding the use and support of genomic medicine. A descriptive cross-sectional survey was conducted in Kwazulu-Natal (KZN) among 3 groups of stakeholders (n = 170): medical practitioners from both private and public healthcare, medical students from UKZN and community members represented by teachers. Three structured questionnaires using a Likert scale were administered. Responses were stratified by practice type, and a scoring scale was developed. Principal component analysis (PCA) was used to reduce data on all constructs that made up each variable. All three groups showed adequate knowledge and a positive attitude towards use, apart from medical students who were not as keen to support future use in their own practice. Although medical practitioners supported the use of this technology, with necessary guidelines, expertise and affordability, only 18% from private practice reported having used it. PCA reduced data to fewer parsimonious constructs for all 3 groups: common threads included an awareness that genetic testing may improve health and disease outcomes; guidelines for use; and the provision of education to increase awareness, training to bolster expertise and confidence to use these services. Participants in this study attributed a lack of uptake to limited expertise and professional support, and a lack of legislative guidelines. We recommend updating continuing professional development for medical practitioners and promoting community education concomitantly. Provision of guidelines and increased accessibility to resources are important.

Dataset Information

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

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Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.

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