Skip to main content
Top
Published in: BMC Public Health 1/2011

Open Access 01-12-2011 | Research article

Lay perceptions of predictive testing for diabetes based on DNA test results versus family history assessment: a focus group study

Authors: Miranda Wijdenes-Pijl, Wybo J Dondorp, Danielle RM Timmermans, Martina C Cornel, Lidewij Henneman

Published in: BMC Public Health | Issue 1/2011

Login to get access

Abstract

Background

This study assessed lay perceptions of issues related to predictive genetic testing for multifactorial diseases. These perceived issues may differ from the "classic" issues, e.g. autonomy, discrimination, and psychological harm that are considered important in predictive testing for monogenic disorders. In this study, type 2 diabetes was used as an example, and perceptions with regard to predictive testing based on DNA test results and family history assessment were compared.

Methods

Eight focus group interviews were held with 45 individuals aged 35-70 years with (n = 3) and without (n = 1) a family history of diabetes, mixed groups of these two (n = 2), and diabetes patients (n = 2). All interviews were transcribed and analysed using Atlas-ti.

Results

Most participants believed in the ability of a predictive test to identify people at risk for diabetes and to motivate preventive behaviour. Different reasons underlying motivation were considered when comparing DNA test results and a family history risk assessment. A perceived drawback of DNA testing was that diabetes was considered not severe enough for this type of risk assessment. In addition, diabetes family history assessment was not considered useful by some participants, since there are also other risk factors involved, not everyone has a diabetes family history or knows their family history, and it might have a negative influence on family relations. Respect for autonomy of individuals was emphasized more with regard to DNA testing than family history assessment. Other issues such as psychological harm, discrimination, and privacy were only briefly mentioned for both tests.

Conclusion

The results suggest that most participants believe a predictive genetic test could be used in the prevention of multifactorial disorders, such as diabetes, but indicate points to consider before both these tests are applied. These considerations differ with regard to the method of assessment (DNA test or obtaining family history) and also differ from monogenic disorders.
Appendix
Available only for authorised users
Literature
1.
go back to reference Collins FS, Green ED, Guttmacher AE, Guyer MS: A vision for the future of genomics research. Nature. 2003, 422: 835-847. 10.1038/nature01626.CrossRefPubMed Collins FS, Green ED, Guttmacher AE, Guyer MS: A vision for the future of genomics research. Nature. 2003, 422: 835-847. 10.1038/nature01626.CrossRefPubMed
2.
go back to reference Dupuis J, O'Donnell CJ: Interpreting results of large-scale genetic association studies: separating gold from fool's gold. JAMA. 2007, 297: 529-531. 10.1001/jama.297.5.529.CrossRefPubMed Dupuis J, O'Donnell CJ: Interpreting results of large-scale genetic association studies: separating gold from fool's gold. JAMA. 2007, 297: 529-531. 10.1001/jama.297.5.529.CrossRefPubMed
3.
go back to reference Janssens AC, van Duijn CM: Genome-based prediction of common diseases: advances and prospects. Hum Mol Genet. 2008, 17: R166-R173. 10.1093/hmg/ddn250.CrossRefPubMed Janssens AC, van Duijn CM: Genome-based prediction of common diseases: advances and prospects. Hum Mol Genet. 2008, 17: R166-R173. 10.1093/hmg/ddn250.CrossRefPubMed
4.
go back to reference Yoon PW, Scheuner MT, Khoury MJ: Research priorities for evaluating family history in the prevention of common chronic diseases. Am J Prev Med. 2003, 24: 128-135.CrossRefPubMed Yoon PW, Scheuner MT, Khoury MJ: Research priorities for evaluating family history in the prevention of common chronic diseases. Am J Prev Med. 2003, 24: 128-135.CrossRefPubMed
5.
go back to reference Valdez R, Yoon PW, Qureshi N, Green RF, Khoury MJ: Family history in public health practice: a genomic tool for disease prevention and health promotion. Annu Rev Public Health. 2010, 31: 25.1-25.19.CrossRef Valdez R, Yoon PW, Qureshi N, Green RF, Khoury MJ: Family history in public health practice: a genomic tool for disease prevention and health promotion. Annu Rev Public Health. 2010, 31: 25.1-25.19.CrossRef
6.
go back to reference Claassen L, Henneman L, Janssens AC, Wijdenes-Pijl M, Qureshi N, Walter FM, et al: Using family history information to promote healthy lifestyles and prevent diseases; a discussion of the evidence. BMC Public Health. 2010, 10: 248-10.1186/1471-2458-10-248.CrossRefPubMedPubMedCentral Claassen L, Henneman L, Janssens AC, Wijdenes-Pijl M, Qureshi N, Walter FM, et al: Using family history information to promote healthy lifestyles and prevent diseases; a discussion of the evidence. BMC Public Health. 2010, 10: 248-10.1186/1471-2458-10-248.CrossRefPubMedPubMedCentral
7.
go back to reference Khoury MJ, Mensah GA: Genomics and the prevention and control of common chronic diseases: emerging priorities for public health action. Prev Chronic Dis. 2005, 2: A05-PubMedPubMedCentral Khoury MJ, Mensah GA: Genomics and the prevention and control of common chronic diseases: emerging priorities for public health action. Prev Chronic Dis. 2005, 2: A05-PubMedPubMedCentral
8.
go back to reference Häberlin DB: Ethical and social aspects of genetic testing services: issues and possible actions. 2005, EuroGentest Häberlin DB: Ethical and social aspects of genetic testing services: issues and possible actions. 2005, EuroGentest
9.
10.
go back to reference Low L, King S, Wilkie T: Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. BMJ. 1998, 317: 1632-1635.CrossRefPubMedPubMedCentral Low L, King S, Wilkie T: Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom. BMJ. 1998, 317: 1632-1635.CrossRefPubMedPubMedCentral
11.
go back to reference Lilani A: Ethical issues and policy analysis for genetic testing: Huntington's disease as a paradigm for diseases with a late onset. Hum Reprod Genet Ethics. 2005, 11: 28-34.CrossRefPubMed Lilani A: Ethical issues and policy analysis for genetic testing: Huntington's disease as a paradigm for diseases with a late onset. Hum Reprod Genet Ethics. 2005, 11: 28-34.CrossRefPubMed
12.
go back to reference van El CG, Cornel MC: Genetic testing and common disorders in a public health framework: recommendations of the European Society of Human Genetics. Eur J Hum Gen. 2011, [Epub ahead of print] van El CG, Cornel MC: Genetic testing and common disorders in a public health framework: recommendations of the European Society of Human Genetics. Eur J Hum Gen. 2011, [Epub ahead of print]
13.
go back to reference Janssens AC, Khoury MJ: Predictive value of testing for multiple genetic variants in multifactorial diseases: implications for the discourse on ethical, legal and social issues. Italian J Public Health. 2006, 3: 35-41. Janssens AC, Khoury MJ: Predictive value of testing for multiple genetic variants in multifactorial diseases: implications for the discourse on ethical, legal and social issues. Italian J Public Health. 2006, 3: 35-41.
14.
go back to reference Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood S, Hollands GJ: Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database of Systematic Reviews. 2010, 10- Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood S, Hollands GJ: Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database of Systematic Reviews. 2010, 10-
15.
go back to reference Haddow JE, Palomaki GE: ACCE: A model process for evaluating data on emerging genetic tests. Human genome epidemiology: a scientific foundation for using genetic information to improve health and prevent disease. Edited by: Khoury MJ, Little J, Burke W. 2003, Oxford University Press, 217-233. Haddow JE, Palomaki GE: ACCE: A model process for evaluating data on emerging genetic tests. Human genome epidemiology: a scientific foundation for using genetic information to improve health and prevent disease. Edited by: Khoury MJ, Little J, Burke W. 2003, Oxford University Press, 217-233.
16.
go back to reference Mokdad AH, Ford ES, Bowman BA, Dietz WH, Vinicor F, Bales VS, et al: Prevalence of obesity, diabetes, and obesity-related health risk factors. JAMA. 2003, 289: 76-79. 10.1001/jama.289.1.76.CrossRefPubMed Mokdad AH, Ford ES, Bowman BA, Dietz WH, Vinicor F, Bales VS, et al: Prevalence of obesity, diabetes, and obesity-related health risk factors. JAMA. 2003, 289: 76-79. 10.1001/jama.289.1.76.CrossRefPubMed
17.
go back to reference Gillies CL, Abrams KR, Lambert PC, Cooper NJ, Sutton AJ, Hsu RT, et al: Pharmacological and lifestyle interventions to prevent or delay type 2 diabetes in people with impaired glucose tolerance: systematic review and meta-analysis. BMJ. 2007, 334: 299-10.1136/bmj.39063.689375.55.CrossRefPubMedPubMedCentral Gillies CL, Abrams KR, Lambert PC, Cooper NJ, Sutton AJ, Hsu RT, et al: Pharmacological and lifestyle interventions to prevent or delay type 2 diabetes in people with impaired glucose tolerance: systematic review and meta-analysis. BMJ. 2007, 334: 299-10.1136/bmj.39063.689375.55.CrossRefPubMedPubMedCentral
18.
go back to reference De Silva NM, Frayling TM: Novel biological insights emerging from genetic studies of type 2 diabetes and related metabolic traits. Curr Opin Lipidol. 2010, 21: 44-50. 10.1097/MOL.0b013e328334fdb6.CrossRefPubMed De Silva NM, Frayling TM: Novel biological insights emerging from genetic studies of type 2 diabetes and related metabolic traits. Curr Opin Lipidol. 2010, 21: 44-50. 10.1097/MOL.0b013e328334fdb6.CrossRefPubMed
19.
go back to reference van Hoek M, Dehghan A, Witteman JC, van Duijn CM, Uitterlinden AG, Oostra BA, et al: Predicting type 2 diabetes based on polymorphisms from genome-wide association studies: a population-based study. Diabetes. 2008, 57: 3122-3128. 10.2337/db08-0425.CrossRefPubMedPubMedCentral van Hoek M, Dehghan A, Witteman JC, van Duijn CM, Uitterlinden AG, Oostra BA, et al: Predicting type 2 diabetes based on polymorphisms from genome-wide association studies: a population-based study. Diabetes. 2008, 57: 3122-3128. 10.2337/db08-0425.CrossRefPubMedPubMedCentral
20.
go back to reference Meigs JB, Cupples LA, Wilson PW: Parental transmission of type 2 diabetes: the Framingham Offspring Study. Diabetes. 2000, 49: 2201-2207. 10.2337/diabetes.49.12.2201.CrossRefPubMed Meigs JB, Cupples LA, Wilson PW: Parental transmission of type 2 diabetes: the Framingham Offspring Study. Diabetes. 2000, 49: 2201-2207. 10.2337/diabetes.49.12.2201.CrossRefPubMed
21.
go back to reference Valdez R, Yoon PW, Liu T, Khoury MJ: Family history and prevalence of diabetes in the U.S. population: the 6-year results from the National Health and Nutrition Examination Survey (1999-2004). Diabetes Care. 2007, 30: 2517-2522. 10.2337/dc07-0720.CrossRefPubMed Valdez R, Yoon PW, Liu T, Khoury MJ: Family history and prevalence of diabetes in the U.S. population: the 6-year results from the National Health and Nutrition Examination Survey (1999-2004). Diabetes Care. 2007, 30: 2517-2522. 10.2337/dc07-0720.CrossRefPubMed
22.
go back to reference Krueger RA, Casey MA: Focus groups: A practical guide for applied research. 2000, Thousand OaksCrossRef Krueger RA, Casey MA: Focus groups: A practical guide for applied research. 2000, Thousand OaksCrossRef
23.
go back to reference Spijkerman AM, Adriaanse MC, Dekker JM, Nijpels G, Stehouwer CD, Bouter LM, et al: Diabetic patients detected by population-based stepwise screening already have a diabetic cardiovascular risk profile. Diabetes Care. 2002, 25: 1784-1789. 10.2337/diacare.25.10.1784.CrossRefPubMed Spijkerman AM, Adriaanse MC, Dekker JM, Nijpels G, Stehouwer CD, Bouter LM, et al: Diabetic patients detected by population-based stepwise screening already have a diabetic cardiovascular risk profile. Diabetes Care. 2002, 25: 1784-1789. 10.2337/diacare.25.10.1784.CrossRefPubMed
24.
25.
go back to reference Scheuner MT, Sieverding P, Shekelle PG: Delivery of genomic medicine for common chronic adult diseases: a systematic review. JAMA. 2008, 299: 1320-1334. 10.1001/jama.299.11.1320.CrossRefPubMed Scheuner MT, Sieverding P, Shekelle PG: Delivery of genomic medicine for common chronic adult diseases: a systematic review. JAMA. 2008, 299: 1320-1334. 10.1001/jama.299.11.1320.CrossRefPubMed
26.
go back to reference Grant RW, Hivert M, Pandiscio JC, Florez JC, Nathan DM, Meigs JB: The clinical application of genetic testing in type 2 diabetes: a patient and physician survey. Diabetologia. 2009, 52: 2299-2305. 10.1007/s00125-009-1512-7.CrossRefPubMed Grant RW, Hivert M, Pandiscio JC, Florez JC, Nathan DM, Meigs JB: The clinical application of genetic testing in type 2 diabetes: a patient and physician survey. Diabetologia. 2009, 52: 2299-2305. 10.1007/s00125-009-1512-7.CrossRefPubMed
27.
go back to reference Wang C, O'Neill SM, Rothrock N, Gramling R, Sen A, Acheson LS, et al: Comparison of risk perceptions and beliefs across common chronic diseases. Prev Med. 2009, 48: 197-202. 10.1016/j.ypmed.2008.11.008.CrossRefPubMed Wang C, O'Neill SM, Rothrock N, Gramling R, Sen A, Acheson LS, et al: Comparison of risk perceptions and beliefs across common chronic diseases. Prev Med. 2009, 48: 197-202. 10.1016/j.ypmed.2008.11.008.CrossRefPubMed
28.
go back to reference Qureshi N, Wilson B, Santaguida P, Little J, Carroll J, Allanson J, Raina P: NIH State-of-the Science Conference: Family History and Improving Health. 2009, Evidence Report/Technology Assessment Publication No. 09-E016. Rockville, MD; Qureshi N, Wilson B, Santaguida P, Little J, Carroll J, Allanson J, Raina P: NIH State-of-the Science Conference: Family History and Improving Health. 2009, Evidence Report/Technology Assessment Publication No. 09-E016. Rockville, MD;
29.
go back to reference Markowitz SM, Park ER, Delahanty LM, O'Brien KE, Grant RW: Perceived impact of diabetes genetic risk testing among patients at high phenotypic risk for type 2 diabetes. Diabetes Care. 2011, 34: 568-573. 10.2337/dc10-1960.CrossRefPubMedPubMedCentral Markowitz SM, Park ER, Delahanty LM, O'Brien KE, Grant RW: Perceived impact of diabetes genetic risk testing among patients at high phenotypic risk for type 2 diabetes. Diabetes Care. 2011, 34: 568-573. 10.2337/dc10-1960.CrossRefPubMedPubMedCentral
30.
go back to reference LaRusse S, Roberts JS, Marteau TM, Katzen H, Linnenbringer EL, Barber M, et al: Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease. Genet Med. 2005, 7: 48-53. 10.1097/01.GIM.0000151157.13716.6C.CrossRefPubMed LaRusse S, Roberts JS, Marteau TM, Katzen H, Linnenbringer EL, Barber M, et al: Genetic susceptibility testing versus family history-based risk assessment: Impact on perceived risk of Alzheimer disease. Genet Med. 2005, 7: 48-53. 10.1097/01.GIM.0000151157.13716.6C.CrossRefPubMed
31.
go back to reference Hicken B, Tucker D: Impact of genetic risk feedback: perceived risk and motivation for health protective behaviours. Psychology, health & medicine. 2002, 7: 25-36. 10.1080/13548500120101531.CrossRef Hicken B, Tucker D: Impact of genetic risk feedback: perceived risk and motivation for health protective behaviours. Psychology, health & medicine. 2002, 7: 25-36. 10.1080/13548500120101531.CrossRef
32.
go back to reference Pijl M, Timmermans DRM, Claassen L, Janssens ACJW, Nijpels G, Dekker JM, Marteau TM, Henneman L: Impact of communicating familial risk of diabetes on illness perceptions and self-reported behavioral outcomes: a randomized controlled trial. Diabetes Care. 2009, 32: 597-599. 10.2337/dc08-1049.CrossRefPubMedPubMedCentral Pijl M, Timmermans DRM, Claassen L, Janssens ACJW, Nijpels G, Dekker JM, Marteau TM, Henneman L: Impact of communicating familial risk of diabetes on illness perceptions and self-reported behavioral outcomes: a randomized controlled trial. Diabetes Care. 2009, 32: 597-599. 10.2337/dc08-1049.CrossRefPubMedPubMedCentral
33.
go back to reference Collins RE, Wright AJ, Marteau TM: Impact of communicating personalized genetic risk information on perceived control over the risk: A systematic review. Gen Med. 2010, [Epub ahead of print] Collins RE, Wright AJ, Marteau TM: Impact of communicating personalized genetic risk information on perceived control over the risk: A systematic review. Gen Med. 2010, [Epub ahead of print]
35.
go back to reference Khoury MJ: From genes to public health: the applications of genetic technology in disease prevention. Genetics Working Group. Am J Public Health. 1996, 86: 1717-1722. 10.2105/AJPH.86.12.1717.CrossRefPubMedPubMedCentral Khoury MJ: From genes to public health: the applications of genetic technology in disease prevention. Genetics Working Group. Am J Public Health. 1996, 86: 1717-1722. 10.2105/AJPH.86.12.1717.CrossRefPubMedPubMedCentral
36.
go back to reference Khoury MJ, Berg A, Coates R, Evans J, Teutsch SM, Bradley LA: The evidence dilemma in genomic medicine. Health Aff(Millwood.). 2008, 27: 1600-1611.CrossRef Khoury MJ, Berg A, Coates R, Evans J, Teutsch SM, Bradley LA: The evidence dilemma in genomic medicine. Health Aff(Millwood.). 2008, 27: 1600-1611.CrossRef
37.
go back to reference Hall MA, Rich SS: Patients' fear of genetic discrimination by health insurers: the impact of legal protections. Genet Med. 2000, 2: 214-221. 10.1097/00125817-200007000-00003.CrossRefPubMed Hall MA, Rich SS: Patients' fear of genetic discrimination by health insurers: the impact of legal protections. Genet Med. 2000, 2: 214-221. 10.1097/00125817-200007000-00003.CrossRefPubMed
38.
go back to reference Sanderson SC, Wardle J, Jarvis MJ, Humphries SE: Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based survey in the UK. Prev Med. 2004, 39: 458-464. 10.1016/j.ypmed.2004.04.051.CrossRefPubMed Sanderson SC, Wardle J, Jarvis MJ, Humphries SE: Public interest in genetic testing for susceptibility to heart disease and cancer: a population-based survey in the UK. Prev Med. 2004, 39: 458-464. 10.1016/j.ypmed.2004.04.051.CrossRefPubMed
39.
go back to reference Henneman L, Timmermans DR, Van Der Wal G: Public attitudes toward genetic testing: perceived benefits and objections. Genet Test. 2006, 10: 139-145. 10.1089/gte.2006.10.139.CrossRefPubMed Henneman L, Timmermans DR, Van Der Wal G: Public attitudes toward genetic testing: perceived benefits and objections. Genet Test. 2006, 10: 139-145. 10.1089/gte.2006.10.139.CrossRefPubMed
Metadata
Title
Lay perceptions of predictive testing for diabetes based on DNA test results versus family history assessment: a focus group study
Authors
Miranda Wijdenes-Pijl
Wybo J Dondorp
Danielle RM Timmermans
Martina C Cornel
Lidewij Henneman
Publication date
01-12-2011
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2011
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/1471-2458-11-535

Other articles of this Issue 1/2011

BMC Public Health 1/2011 Go to the issue