Attitudes toward presymptomatic testing in Huntington disease

Mastromauro, Carol A.; Myers, Richard H.; Berkman, Barbara; Opitz, John M.; Reynolds, James F.

doi:10.1002/ajmg.1320260205

Cited by 139 publications

(77 citation statements)

References 21 publications

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“…44 A strong tendency for people to self-select themselves in or out of testing on the basis of their beliefs about their anticipated response to the test result has been observed in the clinical literature. 45,46 The suggestion also is supported by some psychological theories, particularly those based on subjective expected utility theory, 47,48 which argue that outcome expectancies-defined as an individual's expectations about the outcomes or consequences of …”

Section: Resultsmentioning

confidence: 96%

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

O’Neill

White

Sanderson

et al. 2008

Genetics in Medicine

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Purpose: To examine the feasibility of offering genetic susceptibility testing for lung cancer (GSTM1) via the Internet to smokers who were blood relatives of patients with lung cancer. Outcomes include proportion who logged on to the study website to consider testing, made informed decisions to log on and to be tested. Methods: Baseline measures were assessed via telephone survey. Participants could choose to log on to the study website; those who did were offered testing. Informed decisions to log on and to be tested were indicated by concordance between the decision outcome and test-related attitudes and knowledge. Results: Three hundred four relatives completed baseline interviews. One hundred sixteen eligible relatives expressed further interest in receiving information via the web. Fifty-eight logged on and 44 tested. Those logging on expressed greater quit motivation, awareness of cancer genetic testing, and were more likely to be daily Internet users than those who did not log on. Approximately half of the sample made informed decisions to log on and to be tested. Conclusion: Interest in a web-based protocol for genetic susceptibility testing was high. Internet-delivered decision support was as likely as other modalities to yield informed decisions. Some subgroups may need additional support to improve their decision outcomes. Genet Med 2008:10(2):121-130. Key Words: Internet, genetic testing, test uptake, decision making, GSTM1, lung cancerAvailability of genetic susceptibility testing for common diseases is likely to increase as the evidence supporting gene-disease associations continues to grow. 1 There is a good deal of optimism that such testing might be beneficial for motivating individuals to adopt healthy lifestyles. 2 Genetic susceptibility testing for lung cancer has been suggested as a means to motivate smoking cessation. 3 However, a challenge for integrating such testing into smoking cessation or other behavior change interventions is that most of these interventions are self-directed, low intensity, and obliged to be low in cost to maximize dissemination. 4 Before any such integration, the feasibility of offering genetic susceptibility testing and conveying risk feedback, via alternate, user-friendly, self-directed delivery models, such as the Internet, must be assessed. 5 To our knowledge, no studies to date have offered genetic susceptibility testing using solely a web-based format. This is despite the fact that 75% of Americans use the Internet on a regular basis, and the impact of Internet applications on physician-patient communication and health care delivery continues to expand. 6 -8 Though no studies have examined delivery of genetic test results via the Internet, research to date supports the examination of alternate delivery models in some settings. For example, one trial delivered genetic susceptibility testing for alpha-1 antitrypsin deficiency, a smoking-linked form of emphysema, via the mail to unaffected individuals with some success. 9,10 Results of another trial, in which ...

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Section: Resultsmentioning

confidence: 96%

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

O’Neill

White

Sanderson

et al. 2008

Genetics in Medicine

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“…The questionnaire was constructed by drawing on items used in other published studies after an extensive literature review on adult onset neurodegenerative disorders (Quaid et al 1989;Tan et al 2007;Evers-Kiebooms et al 1987;Mastromauro et al 1987;Quaid 2999). The questionnaire contained 41 items in four sections: demographic information, knowledge about genetics and PD, attitudes about genetic testing for PD, and genetic information services (see supplementary information).…”

Section: Methodsmentioning

confidence: 99%

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

Scuffham

McInerny-Leo

et al. 2013

J Community Genet

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Advances in genetic tests provide valuable information for clinicians and patients around risks and inheritance of Parkinson's Disease (PD); however, questions arise whether those affected or at risk of PD will want genetic testing, particularly given that there are no preventive or diseasemodifying therapies currently available. This study sought to determine knowledge and attitudes toward genetic testing for those affected with PD. A cross-sectional study was undertaken using a standardized questionnaire with six multi-choice genetic knowledge and 17 multi-choice attitude items. Participants were selected from a registry of people affected with PD living in Queensland, Australia. Half of the selected index cases had a family history of PD. Ordinal regression was used to evaluate the association between support for genetic testing and demographic, knowledge, and other attitudinal factors. The level of genetic knowledge was relatively low (37 % correct responses). The vast majority supported diagnostic testing (97 %) and 90 % would undertake a genetic test themselves. Support for predictive was lower (78 %) and prenatal genetic testing had the least support (58 %). Benefits of testing were identified as the ability to know the child's risk, seek therapies, and helping science with finding a cure. Concerns about genetic testing included potential emotional reactions and test accuracy. Genetic knowledge was not significantly associated with attitudes towards genetic testing. Patients with PD have strong interest in genetic testing for themselves with support for diagnostic testing but less support for predictive and prenatal testing. Genetic knowledge was unrelated to testing attitudes.

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“…4 Although early surveys indicated that predictive testing would be requested by 66 -79% of individuals at risk for HD 5,6 worldwide uptake currently ranges between 3 and 24% among at-risk individuals. 7 The most frequently cited reasons for declining predictive testing have been the absence of a cure, concerns about coping and the fear of genetic discrimination (GD).…”

Section: Introductionmentioning

confidence: 99%

Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

et al. 2007

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It has been over 20 years since the inception of predictive testing for Huntington disease (HD), yet the social implications of knowing one's genetic risk for HD have not been fully explored. Genetic discrimination (GD) is a potential risk associated with predictive testing. Although anecdotal reports of GD have been documented, there is a paucity of research on the nature and experiences of GD in the context of HD. The purpose of this study was to describe the concerns and experiences of GD in the HD community. Semistructured interviews were conducted with 45 genetically tested and 10 untested individuals and analyzed using grounded theory methods. Our findings demonstrate that a majority of individuals were concerned about (37/55) and experienced GD (32/55) across a variety of contexts that extend beyond the traditionally examined contexts of insurance and employment to include family, social, government, and health-care domains. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. Our findings provide an insight into some of the specific processes and factors influencing engagement with GD. These results help identify areas where more education and support is needed and provide direction to genetic professionals supporting their clients as they confront issues of GD and genetic testing.

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Attitudes toward presymptomatic testing in Huntington disease

Cited by 139 publications

References 21 publications

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

The feasibility of online genetic testing for lung cancer susceptibility: uptake of a web-based protocol and decision outcomes

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

Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease

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