Perceived genetic knowledge, attitudes towards genetic testing, and the relationship between these among patients with a chronic disease

Abstract

Objective: Genetics increasingly permeate everyday medicine. When patients want to make informed decisions about genetic testing, they require genetic knowledge. This study examined the genetic knowledge and attitudes of patients with chronic diseases, and the relationship between both. In addition, patients were asked about their preferred source of genetic information. Methods: Questionnaires were mailed to participants of a nationwide representative sample of patients with chronic diseases in the Netherlands (n = 1916). Results: The response rate was 82% (n = 1496). Perceived genetic knowledge was low, particularly among older and lower educated patients. Attitudes towards genetics were rather positive, especially among younger and higher educated patients. Some concerns were also documented, mainly about the consequences of genetic testing for employment and taking insurance. Patients who perceived to have little knowledge found it difficult to formulate an opinion about genetic testing. Higher levels of genetic knowledge were associated with a more favourable attitude towards genetics. Chronic patients prefer to receive genetic information from their GP. Conclusion: Chronic patients are ill prepared when they require genetic knowledge to make decisions regarding the treatment of their disease. This seems to result from a knowledge deficiency rather than from disagreement with the genetic developments. Practice implications: When chronic patients are in need of information about genetics or genetic testing, their general practitioner should provide this. #

Knowledge and attitudes towards genetic testing in those affected with Parkinson’s disease

“…This was not surprising given the levels of genetic knowledge in the sample. Morren et al (2007) and Jallinoja and Aro (2000) reported that high levels of knowledge were positively associated with favorable attitudes towards genetic testing, whereas Tan et al (2007) found no significant associations between these factors in North Americans affected with PD (or their carers). The present study had similar findings to Tan et al (2007); moreover, this study and Tan et al's study are comparable as they both had similar study designs, and used the same knowledge items, and the North American sample of PD affected people had similar characteristics to this study.…”

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

“…To ascertain participants' attitudes and expectations about the future of genetic testing, we used a survey developed by Morren et al (2007). In this survey, participants were asked to indicate their level of agreement with 13 statements regarding anticipation of the impact of genetic testing on society, use of genetic information, and the importance of genetic aspects of diseases.…”

“…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.…”

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial

“…3 However, previous studies have described the initial cancer genetic counseling visit as predominantly educational, with large amounts of standard information and little counselee participation. [4][5][6][7] Because lay understanding of Mendelian genetics is poor, [8][9][10][11][12] a large part of the counselor communication is education about hereditary breast cancer, inheritance, and DNA testing. 13 Moreover, counselors direct the communication, initiate the discussion of most topics, 14 and seldom build on the counselee's perspective, i.e., her needs, knowledge, and risk perception.…”