Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia

Senior, Victoria; Marteau, Theresa M.; Peters, Timothy J.

doi:10.1016/s0277-9536(99)00099-4

Cited by 164 publications

(152 citation statements)

References 9 publications

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“…9 Essentialist biases also decrease the acknowledgment of environmental causes and personal choice. 9 With regard to health-related information, research indicates that individuals who make genetic attributions for health-related conditions perceive cardiovascular conditions as more life threatening, 11 manifest greater desire for social distance from a person with mental illness, 12 and expect poorer prognosis with respect to medical conditions. 13 Thus, perception of genetic etiology is linked to a variety of determinism-enhancing beliefs.…”

Section: Introductionmentioning

confidence: 99%

The effects of learning about one’s own genetic susceptibility to alcoholism: a randomized experiment

Dar‐Nimrod

Zuckerman

Duberstein

2013

Genetics in Medicine

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Section: Introductionmentioning

confidence: 99%

The effects of learning about one’s own genetic susceptibility to alcoholism: a randomized experiment

Dar‐Nimrod

Zuckerman

Duberstein

2013

Genetics in Medicine

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“…A study on parents of newborns with familial hypercholesterolaemia (FH) found them to be fatalistic about the condition (Senior, Marteau, Peters, 1999), whereas adults with FH were observed to consider it to be controllable (Senior et al, 2002). It has generally been observed that individuals have a multifactorial understanding of familial risk of heart disease and cancer (Walter et al 2004).…”

Section: Perceptions Of Genetic Riskmentioning

confidence: 99%

“…Qualitative research on patient experiences of familial hypercholesterolaemia (Senior, Marteau & Peters, 1999, Senior et al, 2002 and genetic susceptibility to hemochromatosis (Bharadwaj, 2002, Bharadwaj et al, in press), for which preventive strategies exist, has observed that different groups of patients may have significantly different perceptions of the conditions, ranging from feelings of indifference and being in control to fatalism and resentment for not being diagnosed earlier. More generally, it has been suggested that testing for genetic susceptibilities may medicalise healthy but "at risk" individuals (Melzer & Zimmern, 2002) and overplay the role of genes in the development of common, complex diseases (Petersen & Bunton, 2002).…”

Section: Introductionmentioning

confidence: 99%

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

Saukko

Richards

Shepherd

et al. 2006

Social Science & Medicine

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Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with fortytwo participants, who had undergone testing for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle.Many participants considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants used to make specific health decisions

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“…However, the opposite effect is also possible, i.e. an individual with a ''protective genotype'' may adopt an unhealthy lifestyle because they feel they are genetically protected (Senior et al 1999). A systematic review of the evidence for lifestyle behavioural changes following provision of disease risk predisposition based on DNA information concluded that claims that receiving DNA-based test results motivates people to change their behaviour are not supported by the evidence and that larger and higher quality randomised controlled trials (RCTs) are needed (Marteau et al 2010).…”

Section: Introductionmentioning

confidence: 99%

Design and baseline characteristics of the Food4Me study: a web-based randomised controlled trial of personalised nutrition in seven European countries

et al. 2014

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Improving lifestyle behaviours has considerable potential for reducing the global burden of non-communicable diseases, promoting better health across the lifecourse and increasing well-being. However, realising this potential will require the development, testing and implementation of much more effective behaviour change interventions than are used conventionally. Therefore, the aim of this study was to conduct a multi-centre, web-based, proof-of-principle study of personalised nutrition (PN) to determine whether providing more personalised dietary advice leads to greater improvements in eating patterns and health outcomes compared to conventional populationbased advice. A total of 5,562 volunteers were screened across seven European countries; the first 1,607 participants who fulfilled the inclusion criteria were recruited into the trial. Participants were randomly assigned to one of the following intervention groups for a 6-month period: Level 0-control group-receiving conventional, non-PN advice; Level 1-receiving PN advice based on dietary intake data alone; Level 2-receiving PN advice based on dietary On behalf of the Food4Me study. 123Genes Nutr (2015) 10:450 DOI 10.1007/s12263-014-0450-2 intake and phenotypic data; and Level 3-receiving PN advice based on dietary intake, phenotypic and genotypic data. A total of 1,607 participants had a mean age of 39.8 years (ranging from 18 to 79 years). Of these participants, 60.9 % were women and 96.7 % were from white-European background. The mean BMI for all randomised participants was 25.5 kg m -2 , and 44.8 % of the participants had a BMI C 25.0 kg m -2 . Food4Me is the first large multi-centre RCT of web-based PN. The main outcomes from the Food4Me study will be submitted for publication during 2015.

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Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia

Cited by 164 publications

References 9 publications

The effects of learning about one’s own genetic susceptibility to alcoholism: a randomized experiment

The effects of learning about one’s own genetic susceptibility to alcoholism: a randomized experiment

Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

Design and baseline characteristics of the Food4Me study: a web-based randomised controlled trial of personalised nutrition in seven European countries

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