Patients' rights to laboratory data: Trinucleotide repeat length in huntington disease

American Journal of Medical Genetics

Volumn 62, Issue 1, 1996, Pages 6-9

  Burgess, M M ^a,b   Hayden, M R ^b  

^a UNIVERSITY OF CALGARY   (Canada)

^b UNIVERSITY OF BRITISH COLUMBIA   (Canada)

Author keywords

CAG repeat; Ethics; Neuropsychiatric illness; Predictive testing

Indexed keywords

ANALYTICAL APPROACH; BENEFICENCE; EDITORIAL; ETHICS; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HUMAN; HUNTINGTON CHOREA; MEDICAL ETHICS; PATERNALISM; PATIENT ADVOCACY; PERSONAL AUTONOMY; PROFESSIONAL PATIENT RELATIONSHIP; RISK ASSESSMENT; TRINUCLEOTIDE REPEAT; TRUST;

ANALYTICAL APPROACH; GENETICS AND REPRODUCTION; PROFESSIONAL PATIENT RELATIONSHIP;

BENEFICENCE; ETHICAL ANALYSIS; ETHICS, MEDICAL; GENETIC PRIVACY; GENETIC SCREENING; HUMANS; HUNTINGTON DISEASE; PATERNALISM; PATIENT ADVOCACY; PERSONAL AUTONOMY; RISK ASSESSMENT; TRINUCLEOTIDE REPEATS; TRUST;

EID: 0030097492     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/(sici)1096-8628(19960301)62:1<6::aid-ajmg2>3.0.co;2-x     Document Type: Article

References (25)

1. Andrew SE, Goldberg YP, Kremer B, Telenius H, Theilmann J, Adam S, Starr E, Squitieri F, Lin B, Kalchman MA, Graham RK, Hayden MR (1993): The relationship between trinucleotide repeat length (CAG) and clinical features of Huntington disease. Nature Genet 4:398-403.
2. Baier AC (1986): Trust and antitrust. Ethics 96:231-260.
3. Beauchamp TL, Childress JF (1989): "Principles of Biomedical Ethics," 3rd ed. New York: Oxford University Press.
4. Benjamin C, Adam S, Wiggins S, Theilmann J, Hopley T, Squitieri F, McKellin W, Cox S, Brown SA, Kremer B, Burgess M, Meshino W, Summers A, MacGregor D, Buchanan J, Greenberg C, Carson N, Ives E, Frecker M, Welch JP, Fuller A, Rosenblatt D, Miller S, Dufrasne S, Roy M, Andermann E, Prevost C, Khalifa M, Girard K, Taylor S, Hunter A, Goldsmith C, Whelan S, Eisenburg D, Soltan H, Kane J, Shokeir MHK, Gibson A, Cardwell S, Bamforth S, Grover S, Suchowersky O, Klimek M, Garber T, Gardner HA, MacLeod P, Hayden MR (1994): Proceed with care: Direct predictive testing for Huntington disease. Am J Hum Genet 55:606-617.
5. Canterbury v Spence, 464 F.2d 772:779-80 (D.C. Cir. 1972).
6. DeGrazia D (1991): The ethical justification for minimal paternalism in the use of the predictive test for Huntington's disease. J Clin Ethics 2:219-228.
7. Duyao M, Ambrose C, Myers R, Noveletto A, Persichetti F, Frontali M, Folstein S, Ross C, Franz M, Abbott M, Gray J, Conneally P, Young A, Penney J, Hollingsworth Z, Shoulson I, Lazzarini A, Falek A, Koroshetz W, Sax D, Bird E, Vonsattel J, Bonilla E, Alvir J, Conde JB, Cha J-H, Dure L, Gomez F, Ramos M, Sanchez-Ramos J, Snodgrass S, de Young M, Wexler N, Moscowitz C, Penchaszadeh G, MacFarlane H, Anderson M, Jenkins B, Srinidhi J, Barnes G, Gusella M, MacDonald M (1993): Trinucleotide repeat length instability and age of onset in Huntington's disease. Nature Genet 4:387-392.
8. Faden RR, Beauchamp TL (1986): "A History and Theory of Informed Consent." New York: Oxford University Press.
9. Halushka v. University of Saskatchewan et al. (1965) 53 D.L.R. (2d) 436.
10. Harper PS (1991): "Huntington's Disease." London: W.B. Saunders.
11. Hayden MR (1981): "Huntington's Chorea." New York: Springer-Verlag.
12. Hoffmaster B (1992): Can ethnography save the life of medical ethics? Soc Sci Med 35:1421-1431.
13. Hopp v. Lepp (1980) 2 S.C.R. 192.
14. Huntington's disease Collaborative Research Group (1993): A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell 72:971-983.
15. Katz J (1984): "The Silent World of Doctor and Patient." New York: Free Press, Macmillan Inc.
16. Knoppers BM (1991): "Human Dignity and Genetic Heritage." Ottawa: Law Reform Commission of Canada.
17. Knoppers BM, Laberge CM (1989): DNA sampling and informed consent. Can Med Assoc J 140:1023.
18. Kremer B, Goldberg P, Andrew SE, Squitieri F, Theilmann J, Telenius H, Zeisler J, Lin B, Adam S, Benjamin C, Hayden MR, and the International Huntington Disease Research Group (1994): Worldwide study of the Huntington's disease mutation: The sensitivity and specificity of repeated CAG sequences. N Engl J Med 330:1401-1406.
19. Nedelsky J (1993): Reconceiving rights as relationship. Rev Constitutional Studies 1:1-26.
20. Reibl v. Hughes (1980) 2 S.C.R. 880.
21. Sherwin S (1992): "No Longer Patient: Feminist Ethics and Health Care." Philadelphia: Temple University Press.
22. Snell R, MacMillan JC, Cheadle JP, Fenton I, Lazarou LP, Davies P, MacDonald ME, Gusella JF, Harper PS, Shaw DJ (1993): Relationship between trinucleotide repeat expansion and phenotypic variation in Huntington's disease. Nature Genet 4:393-397.
23. Toulmin S (1981): The tyranny of principles. Hastings Cent Rep 11:31-39.
24. Weiss v. Solomon (1989) R.J.Q. 731.
25. Winkler ER (1993): From Kantianism to contextualism: The rise and fall of the paradigm theory in bioethics. In Winkler ER, Coombs JR (eds): "Applied Ethics: A Reader." Cambridge: Blackwell, pp 343-365.