Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy

Geelen, Els; Hoyweghen, Ine Van; Horstman, Klasien

doi:10.1016/j.socscimed.2010.06.012

Cited by 30 publications

(70 citation statements)

References 19 publications

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“…This study provides further insight into the impact of genetic testing on the family and highlights a need to pay special attention to the familial contexts during pretest and post-test counselling. 28,29 These results also suggest the need for further research on genetic discrimination in this area.…”

Section: Discussionmentioning

confidence: 80%

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Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

et al. 2012

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Since the 1990s, many countries in Europe and the United States have enacted genetic non-discrimination legislation to prevent people from deferring genetic tests for fear that insurers or employers would discriminate against them based on that information. Although evidence for genetic discrimination exists, little is known about the origins and backgrounds of fears of discrimination and how it affects decisions for uptake of genetic testing. The aim of this article is to gain a better understanding of these fears and its possible impact on the uptake of testing by studying the case of hypertrophic cardiomyopathy (HCM). In a qualitative study, we followed six Dutch extended families involved in genetic testing for HCM for three-and-a-half years. Semi-structured interviews were conducted with 57 members of these families. Based on the narratives of the families, we suggest that fears of discrimination have to be situated in the broader social and life-course context of family and kin. We describe the processes in which families developed meaningful interpretations of genetic discrimination and how these interpretations affected family members' decisions to undergo genetic testing. Our findings show that fears of genetic discrimination do not so much stem from the opportunity of genetic testing but much more from earlier experiences of discrimination of diseased family members. These results help identify the possible limitations of genetic non-discrimination regulations and provide direction to clinicians supporting their clients as they confront issues of genetic testing and genetic discrimination.

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Section: Discussionmentioning

confidence: 80%

“…In previous articles, 28,29 we have described the processes of data collection and data analysis in detail; here we will give a summary related to the data to be reported in this article.…”

Section: Methodsmentioning

confidence: 99%

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

et al. 2012

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“…None of the elevated risks was unreasonable, and in a funny sort of way, even though possibly only by chance, among the most elevated risks were diseases that I know from my family. (Female,31 years) After getting the results, some participants interviewed their parents and other relatives about family histories and causes of death, meaning that the test results generate and become part of 'family work' (Geelen, Van Hoyweghen, & Horstman, 2011). Participants described how genetic testing brings one's relatives closer, emphasizing a unity and sameness that had not been apparent before.…”

Section: Enacting Health Historiesmentioning

confidence: 99%

Keeping data alive: talking DTC genetic testing

Ruckenstein

2016

Information, Communication & Society

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“…Furthermore, prior studies of factors that influence uptake of FHH assessment have largely focused on describing variables that influence uptake of FHH assessment among demographically homogenous samples with emphasis on families with highly penetrant genetic mutations [51, 52, 65]. Much of this research has been done in clinical settings and conducted by certified genetic counselors [66].…”

Section: Introductionmentioning

confidence: 99%

Factors Influencing Not Perceiving Family Health History Assessments as Important: Opportunities to Improve Dissemination of Evidence-Based Population Screening for Cancer

Allen

Escoffery

Haardörfer

et al. 2018

Public Health Genomics

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Introduction: Public willingness to collect personal family health history (FHH) assessments is integral to implement population screening to identify those at high cancer risk who could benefit most from lifesaving interventions. Yet, surprisingly little consideration has been given to factors associated with the public’s perceived importance of FHH in the context of cancer. Methods: Using data from the 2013 Health Information National Trends survey, we assessed the association of intrapersonal (e.g., cancer worry), sociodemographic (e.g., education), and interpersonal-level factors (e.g., family trust) associated with not perceiving FHH assessment to be very important for personal health. Associations were tested with bivariate analyses and hierarchical logistic regression. Results: Of the 3,007 respondents, 32.7% reported perceiving FHH as not very important to their health. Whites (p < 0.001), males (p = 0.003), and those born in the United States (p = 0.004) were most likely to perceive FHH as not very important. Those who were least worried about cancer and perceived that cancer risk could not be lowered also viewed FHH as not very important (p = 0.002, p = 0.018, respectively). In hierarchical regression analyses, the association of low cancer worry remained significant after accounting for sociodemographic and interpersonal factors. The addition of sociodemographic factors modestly improved the model; the addition of interpersonal factors did not improve the model. Conclusions: A sizable proportion of the public does not perceive FHH to be very important, may be hard to reach, and impede implementation of population screening guidelines for inherited cancers. Campaigns to increase the perceived value of FHH assessment may need to be tailored to demographic subgroups, emphasize cancer prevention, and encourage family communication.

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Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy

Cited by 30 publications

References 19 publications

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

Keeping data alive: talking DTC genetic testing

Factors Influencing Not Perceiving Family Health History Assessments as Important: Opportunities to Improve Dissemination of Evidence-Based Population Screening for Cancer

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