Knowledge and Attitudes Towards Genetic Testing: A Two Year Follow‐Up Study in Patients with Asthma, Diabetes Mellitus and Cardiovascular Disease

Calsbeek, Hiske; Morren, Mattijn; Bensing, J.M.; Rijken, Mieke

doi:10.1007/s10897-006-9085-9

Cited by 68 publications

(99 citation statements)

References 15 publications

(19 reference statements)

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“…Moreover, the correct pre-visit knowledge of breast cancer and heredity was 4.8 (CI 4.5-5.1) in the prior study and was 4.7 in the dataset of the current study at the UMCU (Albada 2011). This finding is consistent with studies of cancer patients' reporting that their genetic knowledge did not increase over time (Calsbeek et al 2007). Thus, a comparison of two studies from one genetics centre indicates that characteristics of the population of counselees have not changed much from 2005 to 2009.…”

Section: Limitationssupporting

confidence: 91%

“…Many expect to be offered a DNA-test independent of their disease status and risk profile (Metcalfe et al 2007;Hallowell et al 1997;Pieterse et al 2005c). Also, many people in the UK and the NL lack basic genetic knowledge (Henneman et al 2004;Calsbeek et al 2007;Morren et al 2007;Mesters et al 2005;Walter et al 2004). Thus, both UK and Dutch counselees have important information needs and seem to lack genetic knowledge upon entering breast cancer genetic counselling.…”

Section: Introductionmentioning

confidence: 99%

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Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

et al. 2011

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Counselees from different countries may differ in demographic and medical characteristics and this could affect their pre-counselling cognitions and psychosocial variables. Research outcomes may therefore not be easily transferable between countries. To examine this, a crossnational comparison of UK (West Midlands: WM) and Dutch (Middle Netherlands: MN) counselees in breast cancer genetic counselling was conducted. Two hundred thirty-eight WM and 156 MN proband counselees were compared on demographics, breast cancer history and referral pathways. Multivariate logistic regression analyses were performed to check whether national differences in knowledge of breast cancer and heredity, risk perception, worry and information needs persisted when corrected for the background characteristics. About half of the Dutch compared to 8% of UK counselees were affected by breast cancer. More UK than Dutch counselees were at high risk from hereditary breast cancer. UK counselees had higher risk perceptions and more knowledge about breast cancer prevalence, but these differences lost significance when corrected for counselees' risk levels and other background characteristics. Counselees from the UK might report higher levels of worry than Dutch counselees and this could not be explained by their background characteristics. Comparisons of findings between the UK and the Netherlands show that the UK seems to have a higher percentage of highrisk referrals and these counselees seem to have higher risk perceptions. Irrespective of their actual risk level, UK counselees might be more worried. Comparing findings between the different countries raises questions about how transferable research findings are from one culture to another.

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Section: Limitationssupporting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

et al. 2011

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“…For example, 92% indicated that they agreed or strongly agreed with the use of DNA testing for early detection of diseases. Participants in our study had significantly more positive attitudes than those in the two European studies of patient populations that used the same survey instrument ( Jallinoja and Aro, 1999;Calsbeek et al, 2007) ( p < 0.003).…”

Section: Interest and Attitudes Toward Geneticsmentioning

confidence: 53%

“…The number of genes has changed for each survey to reflect current knowledge. Jallinoja and Aro (1999) originally listed 70,000 genes, Calsbeek et al (2007) listed 30,000, and this survey listed 22,000.…”

Section: Perceived Genetic Knowledgementioning

confidence: 97%

“…Descriptive statistics were used to summarize the demographic factors of the study sample and their association with baseline measures of knowledge. For each survey question, responses were compared to early reports ( Jallinoja and Aro, 1999;Calsbeek et al, 2007;Morren et al, 2007) using Pearson chi-squared tests, with a Bonferonni correction for the number of questions in each measure of knowledge or attitudes. Kruskal-Wallis tests were used to evaluate the associations between the demographic factors and literacy and to compare subscales of literacy.…”

Section: Survey Analysismentioning

confidence: 99%

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Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Haga

Barry²,

Mills³

et al. 2013

Genetic Testing and Molecular Biomarkers

210

230

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Background: Variable health literacy and genetic knowledge may pose significant challenges to engaging the general public in personal genomics, specifically with respect to promoting risk comprehension and healthy behaviors. Methods: We are conducting a multistage study of individual responses to genomic risk information for Type 2 diabetes mellitus. A total of 300 individuals were recruited from the general public in Durham, North Carolina: 60% self-identified as White; 70% female; and 65% have a college degree. As part of the baseline survey, we assessed genetic knowledge and attitudes toward genetic testing. Results: Scores of factual knowledge of genetics ranged from 50% to 100% (average = 84%), with significant differences in relation to racial groups, the education level, and age. Scores were significantly higher on questions pertaining to the inheritance and causes of disease (mean score 90%) compared to scientific questions (mean score 77.4%). Scores on the knowledge survey were significantly higher than scores from European populations. Participants' perceived knowledge of the social consequences of genetic testing was significantly lower than their perceived knowledge of the medical uses of testing. More than half agreed with the statement that testing may affect a person's ability to obtain health insurance (51.3%) and 16% were worried about the consequences of testing for chances of finding a job. Conclusions: Despite the relatively high educational status and genetic knowledge of the study population, we find an imbalance of knowledge between scientific and medical concepts related to genetics as well as between the medical applications and societal consequences of testing, suggesting that more effort is needed to present the benefits, risks, and limitations of genetic testing, particularly, at the social and personal levels, to ensure informed decision making.

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Genetic knowledge and attitudes of parents of children with congenital heart defects

Fitzgerald-Butt

Klima

Kelleher

et al. 2014

American J of Med Genetics Pt A

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Clinical genetic testing for specific isolated congenital heart defects (CHD) is becoming standard of care in pediatric cardiology practice. Both genetic knowledge and attitudes toward genetic testing are associated with an increased utilization of genetic testing, but these factors have not been evaluated in parents of children with CHD. We mailed a survey to measure the demographics, genetic knowledge, and attitudes towards genetic testing of parents of children with CHD who previously consented to participate in a separate research study of the genetic etiology of left ventricular outflow tract malformations (LVOT). Of the 378 eligible families, 190 (50%) returned surveys with both parents completing surveys in 97 (51%) families, resulting in 287 participants. Genetic knowledge was assessed on an adapted measure on which the mean percent correct was 73.8%. Educational attainment and household income were directly and significantly associated with genetic knowledge (p<0.001). Attitudes about the health effects of genetic testing were favorable with at least 57% agreeing that genetic testing would be used for managing health care and finding cures for disease. Conversely, a minority of participants found it likely that genetic testing would be used for insurance (up to 39.9%), employment (15.8%), or racial/social discrimination (up to 11.2%). Parents of younger children were less likely to endorse employment or racial/social discrimination. Genetic knowledge was not correlated with specific attitudes. Among parents of children with CHD, genetic knowledge was directly associated with household income and education, but additional research is necessary to determine what factors influence attitudes towards genetic testing.

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Knowledge and Attitudes Towards Genetic Testing: A Two Year Follow‐Up Study in Patients with Asthma, Diabetes Mellitus and Cardiovascular Disease

Cited by 68 publications

References 15 publications

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

Genetic knowledge and attitudes of parents of children with congenital heart defects

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