Consent to genetic testing: A family affair?

The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine

Volumn , Issue , 2009, Pages

  Hallowell, Nina ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Genetic information; Genetic tests; Informed consent; Medical research

Indexed keywords

EID: 84922760728     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1093/acprof:oso/9780199231461.003.0011     Document Type: Chapter

References (34)

1. Andorno, R. (2004). The right not to know: an autonomy based approach. Journal of Medical Ethics, 30, 435-9.
2. Beauchamp, T.L. and Childress, J.F. (1994). Principles of Biomedical Ethics. New York: Oxford University Press.
3. Biesecker, B.B., Ishibe, N., Hadley, D.W., et al. (2000). Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. American Journal of Medical Genetics, 93, 257-342.
4. Burgess, M. and d'Agincourt-Canning, L. (2001). Genetic testing for hereditary disease: attending to relational responsibility. The Journal of Clinical Ethics, 12, 361-72.
5. Clarke, A. (1997). The process of genetic counselling: beyond non-directiveness. In Genetics, Society and Clinical Practice, edited by P.S. Harper and A.J. Clarke. Oxford: Bios.
6. Donchin, A. (2000). Autonomy and interdependence: quandaries in genetic decisionmaking. In Mackenzie, C and Stolja N. eds. Relational Autonomy: Feminist-perspectives on Autonomy, Agency and the Social Self. Oxford: Oxford University Press. 236-258
7. D'Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15, 231-47.
8. Daly, P.A., Nolan, C., Green, A., et al. (2003). Predictive testing for BRCA1 and 2 mutations: a male contribution. Annals of Oncology, 14, 549-53.
9. Dawson, L. and Kass, N.E. (2005). Views of US researchers about informed consent in international collaborative research. Social Science and Medicine, 61, 1211-22.
10. Downing, C. (2001). Reproductive Decision-Making in Families Facing the Risk for Huntington's Disease: Perceptions of Responsibility. PhD Thesis, University of Cambridge.
11. Finkler, K. (2000). Experiencing the New Genetics. 61, 1059-71 Philadelphia: University of Pennsylvania Press.
12. Freeman, T. and Richards, M. (2006). DNA testing and kinship: paternity geneology and the search for the 'truth' of genetic origins. In Ebtehaj, F., Lindley B., and Richards, M. (eds). Kinship Matters. 67-95. Oxford: Hard Publishing.
13. Freeman, T. and Richards, M. (2001). The kin in the gene: the medicalisation of family and kinship in American society. Current Anthropology, 42, 235-63.
14. Freeman, T. and Richards, M. (2005). Family, kinship, memory and temporality in the age of the new genetics. Social Science and Medicine, 61, 1059-71. accessed 15/03/2005.
15. Goelen, G., Rigo, A., Bonduelle, and De Greve, J. (1999). Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. Journal of Clinical Oncology, 17, 1595.
16. Hallowell, N. (1999). Doing the right thing: genetic risk and responsibility. Sociology of Health and Illness, 21, 597-621.
17. Hallowell, N., Ardern-Jones, A., Eeles R., et al. (2005). Men's decision-making about predictive BRCA1/2 testing: the role of family. Journal of Genetic Counseling, 14, 207-17.
18. Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V., and Watson, M. (2003). Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29, 74-9.
19. Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., and Watson, M. (2004). Accommodating risk: women's responses to BRCA1/2 genetic testing following a cancer diagnosis. Social Science and Medicine, 59, 553-65.
20. Huibers, A.K. and van't Spijker, A. (1998). The autonomy paradox: predictive genetic testing and autonomy: three essential problems. Patient Education and Counseling, 35, 53-62.
21. Knoppers, B. (1998). Towards a reconstruction of the 'genetic family' new principles? International Digest of Health Legislation, 49, 241-53.
22. Liede, A., Metcalfe, K., Hanna, D., et al. (2000). Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. American Journal of Human Genetics, 67, 1494-504.
23. Lodder, L., Frets, P.G., Trijsburg, R.W., et al. (2001). Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: an exploration of attitudes and psychological functioning during genetic testing. European Journal of Human Genetics, 9, 492-500
24. Newson, A. and Ashcroft, R. (2004). Time to untangle ethical review of genetic research. Bionews
25. Nuffield Council on Bioethics (1993). Genetic Screening: Ethical Issues. London: Nuffield Council on Bioethics.
26. O'Neill, O. (2002). Autonomy and Trust in Bioethics. Cambridge: Cambridge University Press.
27. O'Neill, O. (2003). Some limits of informed consent. Journal of Medical Ethics, 29, 4-7.
28. Parker, M., Ashcroft, R., Wilkie, A.O.M., and Kent, A. (2004). Ethical review of research into rare genetic disorders. British Medical Journal, 329, 288-9.
29. Richards, M.P.M. (2001). Commentary on K Finkler's 'The kin in the gene'. Current Anthropology, 42, 255-6.
30. Richards, M.P.M. (2006). Genes, geneologies and paremity: making babies in the twentyfirst century. In Freedom and Responsibility in Reproductive Choice, edited by J. Spencer and A. Perdain. Oxford: Hart Publishing.
31. Shiloh, S. (1996). Decision-making in the context of genetic risk. In The Troubled Helix: Social and Psychological Implications of the New Human Genetics, edited by T. Marteau and M.P.M. Richards. Cambridge: Cambridge University Press.
32. Sommerville, A. and English, V. (1999). Genetic privacy: orthodoxy or oxymoron. Journal of Medical Ethics, 25, 144-50.
33. Tarpey, P,. Parnau, J., Blow, M., et al. (2004). Mutations in the DLG3 gene cause nonsyndromic X-linked mental retardation. American Journal of Human Genetics, 75, 318-324.
34. Wang, C., Gonzalez, R., and Merajver, S.D. (2004). Assessment of genetic testing and related counseling services: current research and future directions. Social Science and Medicine, 58, 1427-42.