Genetic research into Alzheimer's Disease: A European focus group study on ethical issues

International Journal of Geriatric Psychiatry

Volumn 23, Issue 1, 2008, Pages 11-15

  van der Vorm, Anco ^a   Rikkert, Marcel Olde ^a   Vernooij Dassen, Myrra ^a   Dekkers, Wim ^a  

^a RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Alzheimer's Disease; Ethics; Focus groups; Genetics

Indexed keywords

ALZHEIMER DISEASE; ARTICLE; CLINICAL GENETICS; EARLY DIAGNOSIS; EUROPE; FAMILY CENTERED CARE; GUILT; HETEROZYGOTE; HUMAN; INFORMED CONSENT; MEDICAL DECISION MAKING; MEDICAL ETHICS; MEDICAL RESEARCH; RELATIVE; RESPONSIBILITY; SOCIAL PROBLEM; TREATMENT PLANNING;

AGED; ALZHEIMER DISEASE; ATTITUDE TO HEALTH; BIOETHICAL ISSUES; FAMILY; FOCUS GROUPS; GENETIC RESEARCH; HUMANS; INFORMED CONSENT; PREJUDICE; THIRD-PARTY CONSENT;

EID: 38749151536     PISSN: 08856230     EISSN: 10991166     Source Type: Journal    
DOI: 10.1002/gps.1825     Document Type: Article

References (18)

1. AGS Ethics Committee. 1998. Informed consent for research on human subjects with dementia. J Am Geriatr Soc 46: 1308-1310.
2. Baldwin C, Hughes J, Hope T, et al. 2003. Ethics and dementia: mapping the literature by bibliometric analysis. Int J Geriatr Psychiatry 18: 41-54.
3. Clayton EW. 2003. Ethical, legal, and social implications of genomic medicine. N Engl J Med 349(6): 562-569.
4. Corbin J, Straus A. 1990. Grounded theory research: procedures, canons, and evaluative criteria. Qual Sociol 13(1): 3-21.
5. Dekkers W, Olde Rikkert M. 2006. What is a genetic cause? The example of Alzheimer's disease. Med Health Care Philos 9(3): 273-284.
6. Doukas DJ, Berg JW. 2001. The family covenant and genetic testing. Am J Bioeth 1(3): 2-10.
7. Ensenauer RE, Michiels VV, Reinke SS. 2005. Genetic testing: practical, ethical, and counseling considerations. Mayo Clin Proc 80(1): 63-73.
8. Finkler K, Skrzynia C, Evans JP. 2003. The new genetics and its consequences for family, kinship, medicine and medical genetics. Soc Sci Med 57: 403-412.
9. Heath H, Cowley S. 2004. Developing a grounded theory approach: a comparison of Glaser and Straus. Int J Nurs Stud 41: 141-150.
10. Kitzinger J. 1995. Qualitative research: introducing focus groups. BMJ 311: 299-302.
11. Knoppers BM, Chadwick R. 2005. Human genetic research: emerging trends in ethics. Nat Rev Genet 6: 75-79.
12. Mendonça Lima CA de, Levav I, Jacobsson L, Rutz W, 2003. Stigma and discrimination against older people with mental disorders in Europe. Int J Geriatr Psychiatry 18: 679-682.
13. Miller FA, Ahern C, Ogilvie J, et al. 2005. Ruling in and ruling out: implications of molecular genetic diagnoses for disease classification. Soc Sci Med 61(12): 2536--2545.
14. Scott S, Prior L, Wood F, Gray J. 2005. Repositioning the patient: the implications of being 'at risk'. Soc Sci Med 60(8): 1869-1879.
15. Scully JL, Rippberger C, Rehmann-Sutter C. 2004. Nonprofessionals' evaluations of gene therapy ethics. Soc Sci Med 58: 1415-1425.
16. Thomas SM. 2004. Society and ethics-the genetics of disease. Curr Opin Genet Dev 14: 287-291.
17. Vernooij-Dassen MJFJ, Moniz-Cook ED, Woods RT, et al. and the INTERDEM group 2005. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. Int J Geriatr Psychiatry 20: 377-386.
18. Wexler NS. 1992. The Tiresias complex: Huntington's disease as a paradigm of testing for late-onset disorders. FASEB Journal 6: 2820-2825.