Patient Understanding of Genetic Principles and Their Expectations of Genetic Services within the NHS: A Qualitative Study

Emery, Jon; Kumar, Satinder; Smith, Helen

doi:10.1159/000016141

Cited by 50 publications

(38 citation statements)

References 22 publications

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“…Given this, the public may not realize the benefits of a fuller understanding of genetics through education. However, since genetics will soon be a very intimate part of their healthcare, there is likely a great need for genetic science education, for both the public and health care providers (Emery et al, 1998;Suther & Goodson, 2003). Despite the growth of many excellent educational resources in genetics, including widely available Internet sources and innovative school programs (Munn, Skinner, Conn, Horsma, & Gregory, 1999), these resources may not be widely embraced by those who lack awareness of their misconceptions or who fail to realize the importance of genetics as related to their own lives.…”

Section: Discussionmentioning

confidence: 99%

“…Very few studies have been done on the general United States population to discern Americans' understanding of genetics; most studies focus on public attitudes for policy discussions instead of knowledge that Americans have on the subject. Other studies have focused on how patients understand genetic principles and genetic risks and most of these have demonstrated some degree of misunderstanding, even as related to basic concepts of inheritance (Emery, Kumar & Smith, 1998). There are myriad ways by which genetic terms enter into the public consciousness, but exposure does not equate to understanding.…”

Section: Introductionmentioning

confidence: 99%

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Exploring the Public Understanding of Basic Genetic Concepts

Lanie

Jayaratne

Sheldon

et al. 2004

Journal of Genetic Counseling

240

222

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It is predicted that the rapid acquisition of new genetic knowledge and related applications during the next decade will have significant implications for virtually all members of society. Currently, most people get exposed to information about genes and genetics only through stories publicized in the media. We sought to understand how individuals in the general population used and understood the concepts of 'genetics' and 'genes.' During in-depth one-on-one telephone interviews with adults in the U.S., we asked questions exploring their basic understanding of these terms, as well as their belief as to the location of genes in the human body. A wide-range of responses was received. Despite conversational familiarity with genetic terminology, many noted frustration or were hesitant when trying to answer these questions. In addition, some responses reflected a lack of understanding about basic genetic science that may have significant implications for broader public education measures in genetic literacy, genetic counseling, public health practices, and even routine health care.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Exploring the Public Understanding of Basic Genetic Concepts

Lanie

Jayaratne

Sheldon

et al. 2004

Journal of Genetic Counseling

240

222

View full text Add to dashboard Cite

show abstract

“…19 Indeed, a multifactorial model is probably more appropriate for those with a family history of common chronic disease.…”

Section: Discussionmentioning

confidence: 99%

'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

Walter

Emery

2005

The Annals of Family Medicine

104

126

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PURPOSEThe family history is becoming an increasingly important feature of health promotion and early detection of common chronic diseases in primary care. Previous studies of patients from genetics clinics suggest a divergence between how persons with a family history perceive and understand their risk and the risk information provided by health professionals. This interview study aimed to explore how patients in primary care understand and come to terms with their family history of cancer, heart disease, or diabetes and how family history might affect consultations about disease risk and management.METHODS Thirty semistructured interviews were conducted with general practice patients who had a family history of cancer, heart disease, or diabetes. The transcript data underwent a qualitative constant comparative analysis. RESULTSWhat exactly constitutes having a family history of an illness varied among participants. The development of a personal sense of vulnerability to the illness in the family depended not only on the biomedical approach of counting affected relatives but also on a sophisticated interplay of other factors. The emotional impact of witnessing the illness in the family, particularly if the illness was sudden, premature, or fatal, and the nature of personal relationships within a family that determine a sense of emotional closeness and personal likeness with the affected relative, all contributed to the perception of disease risk. Different beliefs about the contributions of nature and nurture to disease can affect patients' views on the degree of control they can exert over their risk.CONCLUSION This study highlights potential differences between the way patients and medical professionals assess and understand familial risk of cancer, heart disease, and diabetes. Our previous systematic review fi ndings are enhanced by showing that personal experience of disease and the emotional impact can also infl uence familial risk perceptions. Eliciting the patient's perspective when discussing risk of chronic disease, particularly in the context of a family history, could inform a more patient-centered approach to risk assessment and communication and support patients to make informed decisions about the management of their disease risk.

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“…Two articles described how respondents believed it was unnecessary to understand genetic principles, only their consequences in terms of how to manage personal risk and the risk to future generations. 24,32 Models of disease causation also incorporated notions of bad luck, chance, and fate. Although some believed they could reduce their chances of an event that was determined largely by bad luck, others felt deeply fatalistic about familial risk of disease, particularly diseases that have symptoms late in their development, such as ovarian or colorectal cancer or sudden death caused by coronary artery disease.…”

Section: 31mentioning

confidence: 99%

Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research

Walter

Emery

Braithwaite³

et al. 2004

The Annals of Family Medicine

238

217

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PURPOSE Although the family history is increasingly used for genetic risk assessment of common chronic diseases in primary care, evidence suggests that lay understanding about inheritance may confl ict with medical models. This study systematically reviewed and synthesized the qualitative literature exploring understanding about familial risk held by persons with a family history of cancer, coronary artery disease, and diabetes mellitus.METHODS Twenty-two qualitative articles were found after a comprehensive literature search and were critically appraised; 11 were included. A meta-ethnographic approach was used to translate the studies across each other, synthesize the translation, and express the synthesis.RESULTS A dynamic process emerged by which a personal sense of vulnerability included some features that mirror the medical factors used to assess risk, such as the number of affected relatives. Other features are more personal, such as experience of a relative's disease, sudden or premature death, perceived patterns of illness relating to gender or age at death, and comparisons between a person and an affected relative. The developing vulnerability is interpreted using personal mental models, including models of disease causation, inheritance, and fatalism. A person's sense of vulnerability affects how that person copes with, and attempts to control, any perceived familial risk.CONCLUSIONS Persons with a family history of a common chronic disease develop a personal sense of vulnerability that is informed by the salience of their family history and interpreted within their personal models of disease causation and inheritance. Features that give meaning to familial risk may be perceived differently by patients and professionals. This review identifi es key areas for health professionals to explore with patients that may improve the effectiveness of communication about disease risk and management.

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Patient Understanding of Genetic Principles and Their Expectations of Genetic Services within the NHS: A Qualitative Study

Cited by 50 publications

References 22 publications

Exploring the Public Understanding of Basic Genetic Concepts

Exploring the Public Understanding of Basic Genetic Concepts

'Coming Down the Line'-- Patients' Understanding of Their Family History of Common Chronic Disease

Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative Research

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