The role of disease characteristics in the ethical debate on personal genome testing

BMC Medical Genomics

Volumn 5, Issue , 2012, Pages

  Bunnik, Eline M ^a   Schermer, Maartje Hn ^a   Janssens, A Cecile J W ^a  

^a ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

BIOETHICS; CLINICAL GENETICS; DEPRESSION; DISEASE PREDISPOSITION; DISEASE SEVERITY; ETHICAL DECISION MAKING; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; GENOME ANALYSIS; HUMAN; MENTAL DISEASE; NON INSULIN DEPENDENT DIABETES MELLITUS; ONSET AGE; PRIORITY JOURNAL; PROPHYLAXIS; PSYCHOLOGICAL ASPECT; RETINA MACULA AGE RELATED DEGENERATION; REVIEW; RISK ASSESSMENT; RISK FACTOR; STIGMA; ADULT; ARTICLE; DISEASES; ETHICS; GENETIC PREDISPOSITION; GENETICS; HUMAN GENOME; PERSONALIZED MEDICINE; RETINA MACULA DEGENERATION; SOCIAL STIGMA;

ADULT; AGE OF ONSET; DEPRESSIVE DISORDER; DIABETES MELLITUS, TYPE 2; DISEASE; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; GENOME, HUMAN; HUMANS; INDIVIDUALIZED MEDICINE; MACULAR DEGENERATION; SOCIAL STIGMA; YOUNG ADULT;

EID: 84855896799     PISSN: None     EISSN: 17558794     Source Type: Journal    
DOI: 10.1186/1755-8794-5-4     Document Type: Review

References (60)

1. Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market. Borry P, Cornel MC, Howard HC, J Community Genet 2010 1 101 106 10.1007/s12687-010-0023-z 21475669
2. 23andme. http://www.23andme.com
3. Navigenics. http://www.navigenics.com
4. Genetic Health. http://www.genetichealth.com
5. Knome. http://www.knome.com
6. American College of Medical Genetics (ACMG), Board of Directors, ACMG Statement on direct-to-consumer genetic testing 2008
7. Statement of the ESHG on direct-to-consumer genetic testing for health-related purposes. European Society of Human Genetics (ESHG), Eur J Hum Genet 2010 18 1271 1273 20736974
8. Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues. Bunnik EM, Schermer MHN, Janssens ACJW, BMC Med Ethics 2011 12 11 10.1186/1472-6939-12-11 21672210
9. Categorizing genetic tests to identify their ethical, legal, and social implications. Burke W, Pinsky LE, Press NA, Am J Med Genet 2001 106 233 240 10.1002/ajmg.10011 11778984 (Pubitemid 32983391)
10. Recommendations for genetic counselling related to genetic testing. Kääriäinen H, Hietala M, Kristoffersson U, et al. Eurogentest Unit 3 2008
11. Wilson JMG, Jungner G, Principles and practice of screening for disease Geneva: WHO 1968 34
12. ACCE: A model process for evaluating data on emerging genetic tests. Haddow JE, Palomaki GE, Human genome epidemiology: A scientific foundation for using genetic information to improve health and prevent disease Oxford University Press, Khoury MJ, Little J, Burke W, 2003 217 233
13. Centers for Disease Control and Prevention (CDC): Public Health Genomics. http://www.cdc.gov/genomics/gtesting/ACCE/acce-proj.htm
14. Beauchamp TL, Childress JF, Principles of Biomedical Ethics Oxford University Press, USA 6 2008
15. OECD, Guidelines for quality assurance in molecular genetic testing 2007
16. Council of Europe, Additional Protocol to the Convention on Human Rights and Biomedicine, concerning Genetic Testing for Health Purposes 2008
17. Is prevention better than cure? Public health policy and the circular structure of learning. Larsen LT, SSRN eLibrary 2010
18. Health Council of the Netherlands, Genetische screening The Hague: Health Council of the Netherlands 1994 [in Dutch]
19. Council of Europe, Recommendation No. R (94) 11 on Screening as a Tool of Preventive Medicine 1994
20. An epidemiological perspective on the future of direct-to-consumer personal genome testing. Janssens ACJW, van Duijn CM, Investig Genet 2010 1 10 10.1186/2041-2223-1-10 21092344
21. Is there a case in favour of predictive genetic testing in young children? Robertson S, Savelescu J, Bioethics 2001 15 26 49 10.1111/1467-8519. 00210 11699548 (Pubitemid 32154896)
22. Personal utility and genomic information: Look before you leap. Grosse SD, McBride CM, Evans JP, Khoury MJ, Genet Med 2009 11 575 576 10.1097/GIM.0b013e3181af0a80 19623080
23. Uptake of Huntington disease predictive testing in a complete population. Morrison P, Harding-Lester S, Bradley A, Clin Genet 2011 8 3 281 286
24. Council of Europe, Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine (Convention on Human Rights and Biomedicine) 1996
25. Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Borry P, Stultiens L, Nys H, Cassiman J, Dierickx K, Clin Genet 2006 70 374 381 10.1111/j.1399-0004.2006.00692.x 17026616 (Pubitemid 44515636)
26. An international survey of predictive genetic testing in children for adult onset conditions. Duncan RE, Savulescu J, Gillam L, Williamson R, Delatycki MB, Genet Med 2005 7 390 396 10.1097/01.GIM.0000170775.39092.44 16024970 (Pubitemid 41139622)
27. Molecular medicine and concepts of disease: the ethical value of a conceptual analysis of emerging biomedical technologies. Boenink M, Med Health Care and Philos 2009 13 11 23
28. Nuffield Council on Bioethics, Mental disorders and genetics The ethical context 1998
29. How will information about the genetic risk of mental disorders impact on stigma? Spriggs M, Olsson CA, Hall W, Aust N Z J Psychiatry 2008 42 214 220 10.1080/00048670701827226 18247196 (Pubitemid 351234191)
30. Genetic bases of mental illness-a cure for stigma? Phelan J, Trends Neurosci 2002 25 430 431 10.1016/S0166-2236(02)02209-9 12127761 (Pubitemid 34804468)
31. Ethical Considerations in Psychiatric Genetics. Hoop JG, Harv Rev Psychiatry 2008 16 322 338 10.1080/10673220802576859 19085387
32. Predictive and Diagnostic Genetic Testing in Psychiatry. Mitchell PB, Meiser B, Wilde A, Fullerton J, Donald J, Wilhelm K, Schofield PR, Clin Lab Med 2010 30 829 846 10.1016/j.cll.2010.07.001 20832655
33. Depression under stress: ethical issues in genetic testing. Newson AJ, Br J Psychiatry 2009 195 189 190 10.1192/bjp.bp.109.064337 19721104
34. On the biomedicalization of alcoholism. Berghmans R, de Jong J, Tibben A, de Wert G, Theor Med Bioeth 2009 30 311 321 10.1007/s11017-009-9103-7 19424820
35. deCODEme. http://www.decodeme.com/
36. The clinical application of genetic testing in type 2 diabetes: a patient and physician survey. Grant RW, Hivert M, Pandiscio JC, Florez JC, Nathan DM, Meigs JB, Diabetologia 2009 52 2299 2305 10.1007/s00125-009-1512-7 19727660
37. Predictive genetic testing for type 2 diabetes. Janssens ACJW, Gwinn M, Valdez R, Narayan KMV, Khoury MJ, BMJ 2006 333 509 510 10.1136/bmj.38953.598947. 80 16960189 (Pubitemid 44408456)
38. Genetic risk profiling for prediction of type 2 diabetes. Mihaescu R, Meigs J, Sijbrands E, Janssens AC, PLoS Curr 2011 3 RN1208 21278902
39. Prevalence of impaired fasting glucose and its relationship with cardiovascular disease risk factors in US adolescents, 1999-2000. Williams DE, et al. Pediatrics 2005 116 1122 1126 10.1542/peds.2004-2001 16263998 (Pubitemid 46056417)
40. Effect of direct-to-consumer genomewide profiling to assess disease risk. Bloss CS, Schork NJ, Topol EJ, N Engl J Med 2011 364 524 534 10.1056/NEJMoa1011893 21226570
41. Impact of communicating familial risk of diabetes on illness perceptions and self-reported behavioral outcomes: a randomized controlled trial. Pijl M, Timmermans DRM, Claassen L, Janssens ACJW, Nijpels G, Dekker JM, Marteau TM, Henneman L, Diabetes Care 2009 32 597 599 10.2337/dc08-1049 19131458
42. Behavioral consequences of testing for obesity risk. Frosch DL, Mello P, Lerman C, Cancer Epidemiol Biomarkers Prev 2005 14 1485 1489 10.1158/1055-9965.EPI-04-0913 15941960 (Pubitemid 40807350)
43. Childhood obesity: public-health crisis, common sense cure. Ebbeling C, Pawlak D, Ludwig D, Lancet 2002 360 473 482 10.1016/S0140-6736(02)09678-2 12241736 (Pubitemid 34880150)
44. Morbidity and mortality associated with elevated body weight in children and adolescents. Must A, et al. Am J Clin Nutr 1996 63 445S 447S 8615339 (Pubitemid 26075829)
45. Interventions for the prevention of overweight and obesity in preschool children: a systematic review of randomized controlled trials. Monasta L, Batty GD, Macaluso A, Ronfani L, Lutje V, Bavcar A, Van Lenthe FJ, Brug J, Cattaneo A, Obes Rev 2010 5 107 118
46. Predictive value of multiple genetic testing for age-related macular degeneration. Despriet DDG, Klaver CCW, van Duijn CC, Janssens ACJW, Arch Ophthalmol 2007 125 1270 1271 10.1001/archopht.125.9.1270 17846371 (Pubitemid 47403038)
47. Common variation in three genes, including a noncoding variant in CFH, strongly influences risk of age-related macular degeneration. Maller J, George S, Purcell S, Fagerness J, Altshuler D, Daly MJ, Seddon JM, Nat Genet 2006 38 1055 1059 10.1038/ng1873 16936732 (Pubitemid 44325932)
48. Macula Risk. http://www.macularisk.com/
49. Genetic Diagnostic Laboratory. http://www.med.upenn.edu/genetics/core- facs/gdl/
50. Prediction model for prevalence and incidence of advanced age-related macular degeneration based on genetic, demographic, and environmental variables. Seddon JM, Reynolds R, Maller J, Fagerness JA, Daly MJ, Rosner B, Invest Ophthalmol Vis Sci 2008 50 2044 2053 19117936
51. World Health Organization (WHO), The Global Burden of Disease: 2004 Update 2008
52. Antioxidant supplements to prevent or slow down the progression of AMD: a systematic review and meta-analysis. Evans J, Eye 2008 22 751 760 10.1038/eye.2008.100 18425071 (Pubitemid 351850510)
53. Prevention of age-related macular degeneration. Wong IYH, Koo SCY, Chan CWN, Int Ophthalmol 2011 31 73 82 10.1007/s10792-010-9397-5 20862519
54. Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings. Wilde A, Meiser B, Mitchell PB, Schofield PR, Eur J Hum Genet 2009 18 47 51
55. Potential consumers' attitudes toward psychiatric genetic research and testing and factors influencing their intentions to test. Laegsgaard MM, Kristensen AS, Mors O, Genet Test Mol Biomarkers 2009 13 57 65 10.1089/gtmb.2008.0022 19309275
56. Gene Planet. http://www.geneplanet.com/
57. Map my Gene. http://www.mapmygene.com/
58. Genetic risk profiles for depression and anxiety in adult and elderly cohorts. Demirkan A, Penninx BWJH, Hek K, et al. Mol Psychiatry 2011 16 773 783 10.1038/mp.2010.65 20567237
59. The Mayo Clinic. http://www.mayoclinic.org/depression/
60. Pharmacogenetics of antidepressant response. Keers R, Aitchison KJ, Expert Rev Neurother 2011 11 101 125 10.1586/ern.10.186 21158559