Non-professionals' evaluations of gene therapy ethics

Social Science and Medicine

Volumn 58, Issue 7, 2004, Pages 1415-1425

  Scully, Jackie Leach ^a   Rippberger, Christine ^a   Rehmann Sutter, Christoph ^a  

^a UNIVERSITY OF BASEL   (Switzerland)

Author keywords

Disability; Ethics; Somatic gene therapy; Switzerland

Indexed keywords

ETHICS;

ARTICLE; CONTROLLED STUDY; GENE THERAPY; GENETIC ENGINEERING; HEALTH CARE PERSONNEL; HUMAN; MEDICAL ETHICS; MORALITY; PROFESSIONAL PRACTICE;

EID: 0842305117     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0277-9536(03)00336-8     Document Type: Article

References (46)

1. Abramowicz M.J. Therapie génique somatique. Hottois G., Missa J.-N. Nouvelle encyclopédie de bioéthique. 2001;825-829 De Boeck Université Bruxelles.
2. Ahmad W., Atkin K., Jones L. Being deaf and being other things. South Asian deaf young people and identity negotiation Social Science & Medicine. 55:2002;1757-1769.
3. Bosk C.L. Professional ethicist available. Daedalus. 128:1999;47-68.
4. Charmaz K. Good days, bad days. The self in chronic illness and time:1993;Rutgers University Press, New York.
5. Christakis N.A. Prognostication and bioethics. Daedalus. 128:1999;197-214.
6. Clothier C. Report of the committee on the ethics of gene therapy (the clothier report). 1992;HMSO, London.
7. Fletcher J.C. Evolution of ethical debate about human gene therapy. Human Gene Therapy. 1:1990;55-68.
8. Gallagher, E. B. et al. (1998). To enrich bioethics, add one part social to one part clinical. In R. Devries & J. Subedi (Eds.), Bioethics and society. Constructing the ethical enterprise (pp. 166-191). Upper Saddle River, NJ: Prentice Hall.
9. Graumann S. Die somatische gentherapie. 2000;Francke Verlag, Tübingen, Basel.
10. Haimes E. What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics. 16:2002;89-113.
11. Henderson B.J., Maguire B.T. Three lay mental models of disease inheritance. Social Science & Medicine. 50:2000;293-301.
12. Hoffmaster B. Can ethnography save the life of medical ethics? Social Science & Medicine. 35:1992;1421-1431.
13. Holm S., Jayson G. What do patients, their relatives and medical staff know about gene therapy? Bulletin of Medical Ethics. 173:2001;13-19.
14. 2. In G. Weisz (Ed.), Social science perspectives on medical ethics (pp. 262-272). Dordrecht: Klewer.
15. Juengst E., Walters L. Gene therapy. Ethical and social issues Reich W.T. Encyclopedia of bioethics. 1995;Macmillan, New York.
16. Kerr A., Cunningham-Burley S., Amos A. The new genetics. Professionals' discursive boundaries Sociological Review. 45:1997;279-303.
17. Kerr A., Cunningham Burley S., Amos A. The new genetics and health. Mobilising lay expertise Public Understanding of Science. 7:1998;41-60.
18. Kleinman A. Moral experience and ethical reflection. Can ethnography reconcile them? A quandary for 'the new bioethics'. Daedalus. 128:1999;69-97.
19. Krippendorff K. Content analysis. An introduction to its methodology. 1980;Sage Publications, Beverly Hills.
20. Leclerc B. Therapie génique. Hottois G., Missa J.-N. Nouvelle encyclopédie de bioéthique. 2001;814-818 De Boeck Université Bruxelles.
21. Lieban R.W. Medical anthropology and the comparative study of medical ethics. Weisz G. Social science perspectives on medical ethics. 1990;221-239 Kluwer, Dordrecht.
22. Lupton D. Medicine as culture. Illness, disease and the body in western societies. 1994;Sage Publications, London.
23. Macer D. Public acceptance of human gene therapy and perceptions of human genetic manipulation. Human Gene Therapy. 3:1992;511-518.
24. Macer D.R.J., Akiyama S., Alora A.T., Asada Y., Azariah J., Azariah H., Boost M.V., Chatwachirawong P., Kato Y., Kaushik V., Leavitt F.J., Macer N.Y., Ong C.C., Srinives P., Tsuzuki M. International perceptions and approval of gene therapy. Human Gene Therapy. 6:1995;791-803.
25. Marks D. Disability. Controversial debates and psychosocial perspectives:1999;Routledge, London.
26. Marshall P.A. Anthropology and bioethics. Medical Anthropology Quarterly. 6:1992;49-73.
27. Mayring P. Qualitative inhaltsanalyse. Flick U., von Kardorff E., Steinke I. Qualitative Forschung. Ein Handbuch. 2003;469-474 Rowohlt Taschenbuch Verlag GmbH, Hamburg.
28. Michie S., McDonald V., Marteau T. Understanding responses to predictive genetic testing. A grounded theory approach Psychology and Health. 11:1996;455-470.
29. Middleton A., Hewison J., Mueller R.F. Attitudes of deaf adults toward genetic testing for hereditary deafness. American Journal of Human Genetics. 63:1998;1175-1180.
30. Middleton A., Hewison J., Mueller R. Prenatal diagnosis for inherited deafness - What is the potential demand? Journal of Genetic Counselling. 10:2001;121-131.
31. Nicholson, G. (1997). Hermeneutic phenomenology. In L. Embree et al. (Eds.), Encyclopedia of phenomenology (pp. 304-308.) Dordrecht: Klewer.
32. Post S.G. Selective abortion and gene therapy. Reflections on human limits Human Gene Therapy. 2:1991;229-233.
33. Rapp R. Testing women, testing the fetus. The social impact of amniocentesis in America. 2000;Routledge, London/New York.
34. Rehmann-Sutter C. Gentherapien. Bondolfi A., Müller H.-j. Medizinische Ethik im ärztlichen Alltag. 1999;193-215 EMH, Basel.
35. Reiss M.J. Sollten wir Menschen gentechnisch verändern? Weber M., Hoyningen-Huence P. Ethische Probleme in den Biowissenschaften. 2001;7-29 Synchron, Heidelberg.
36. Richards M.P.M. Lay and professional knowledge of genetics and inheritance. Public Understanding of Science. 5:1996;217-230.
37. Richards M., Ponder M. Lay understanding of genetics. A test of a hypothesis Journal of Medical Genetics. 33:1996;1032-1036.
38. Scully J.L., Rehmann-Sutter C. When norms normalize. The case of genetic enhancement. Human Gene Therapy. 12:2001;87-95.
39. Shakespeare, T. (1996). Disability, identity, difference. In: C. Barnes, & G. Mercer (Eds.), Exploring the divide: Illness and disability. (pp. 94-113). Leeds: The Disability Press.
40. Shakespeare T. 'Losing the plot?' Medical and activist discourses of contemporary genetics and disability. Sociology of Health and Illness. 21:1999;669-688.
41. Smith J. Risk perception and decision-making processes in candidates for genetic testing for Huntington's disease. An interpretative phenomenological analysis Journal of Health Psychology. 7:1996;131-144.
42. Smith T. Ethics in medical research. A handbook of good practice. 1999;Cambridge University Press, Cambridge.
43. Stephenson J. Gene therapy trials show clinical efficacy. Journal of American Medical Association. 283:2000;589-590.
44. Stern S.J., Arnos K.S., Murrelle L., Welch K.O., Nance W.E., Pandya A. Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. Journal of Medical Genetics. 39:2002;449-453.
45. Van der Zalm J.E., Bergum V. Hermeneutic-phenomenology. Providing living knowledge for nursing practice Journal of Advanced Nursing. 31:2000;211-218.
46. Walters L., Palmer J.G. The ethics of human gene therapy. 1997;Oxford University Press, Oxford.