Controversies and ethical issues in cancer-genetics clinics

Lancet Oncology

Volumn 6, Issue 5, 2005, Pages 301-310

  Harris, Marion ^a   Winship, Ingrid ^a   Spriggs, Merle ^a  

^a ROYAL CHILDREN'S HOSPITAL   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER DIAGNOSIS; CANCER GENETICS; CANCER SUSCEPTIBILITY; CONFIDENTIALITY; COST BENEFIT ANALYSIS; EMPLOYMENT; GENETIC PROCEDURES; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; HEALTH INSURANCE; HEALTH STATUS; HUMAN; HUMAN RIGHTS; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; JUSTICE; LAW; MEDICAL ETHICS; ONCOGENE; PATENT; PEDIGREE ANALYSIS; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; PROFESSIONAL PRACTICE; PSYCHOLOGICAL ASPECT; REVIEW; TUMOR SUPPRESSOR GENE;

GENETICS AND REPRODUCTION;

CHILD; CHILD, PRESCHOOL; CONFIDENTIALITY; DISCLOSURE; ETHICS, MEDICAL; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HUMANS; INFORMED CONSENT; INSURANCE, LIFE; NEOPLASMS; PEDIGREE; PREJUDICE;

EID: 17844401190     PISSN: 14702045     EISSN: None     Source Type: Journal    
DOI: 10.1016/S1470-2045(05)70166-2     Document Type: Review

References (70)

1. T Beauchamp J Childress Principles of biomedical ethics 5th edn. 2001 Oxford University Press New York 57-58
2. The American Society of Human Genetics social issues subcommittee on familial disclosure ASHG statement: Professional disclosure of familial genetic information Am J Hum Genet 62 1998 474-483
3. K Offit M Bertagnoli A Bombard et al. American Society of Oncology Policy Statement Update: Genetic testing for cancer susceptibility J Clin Oncol 21 2003 2397-2424
4. H Vasen M van Ballegooijen E Buskens et al. A cost effectiveness analysis of colorectal screening of hereditary non polyposis colorectal carcinoma gene carriers Cancer 82 1998 1632-1637
5. A Stanley C Gaff A Aittomaki et al. Value of predictive genetic testing in management of hereditary non-polyposis colorectal cancer Med J Aust 172 2000 313-316
6. S Ramsey L Clarke R Etzioni et al. Cost effectiveness of microsatellite instability screening as a method for detecting hereditary non-polyposis colorectal cancer Ann Intern Med 135 2001 577-588
7. Y Chikhaoui H Gelinas L Joseph et al. Cost minimisation analysis of genetic testing versus clinical screening of at risk relatives for familial adenomatous polyposis Int J Technol Assess Health care 18 2002 67-80
8. J Balmana J Sanz X Bonfill et al. Genetic counselling program in familial breast cancer: Analysis of its effectiveness, cost and cost effectiveness ratio Int J Cancer 112 2004 647-652
9. Australian Government Dept of Health and Ageing National Hospital Cost data collection cost report round 6 2001-02 http://www.health.gov.au/ internet/wcms/publishing.nsf/e11ffa331b366c54ca2569210006982f/ health-casemix-costing-fc_r6.htm/$FILE/fc_r6.pdf (accessed Dec 28, 2004)
10. C Julian-Reynier F Eisinger P Vennin et al. Attitudes towards cancer predictive testing and transmission of information to the family J Med Genet 33 1996 731-736
11. J Wilcke Personal papeW: Late onset genetic disease: where ignorance is bliss, is it folly to inform relatives? BMJ 317 1998 744-747
12. JM Falk B Dugan M O'Riordan et al. Medical geneticists' duty to warn at risk relatives for genetic disease Am J Med Genet 120 2003 374-380
13. Clarke A, Richards M, Kerzin-Storrar L, et al. Genetic professionals' reports of non disclosure of genetic risk information within families. Eur J Hum Genet (in press)
14. President's commission for the study of ethical problems in medicine and biomedical and behavioural research (1983) screening and counselling for genetic conditions 1983 US government printing office Washington DC
15. Committee of the Health Council of the Netherlands Heredity: Science and society 1989 Health Council of the Netherlands The Hague
16. Council of Europe Recommendation no. R(92)3 of the committee of ministers to member states on genetic testing and screening for health care purposes Int Dig Health Legis 43 1992 284-289
17. Nuffield Council on Bioethics (1993) Genetic screening: Ethical issues 1993 Nuffield Council on Bioethics London
18. DC Wertz JC Fletcher K Berg Guidelines on ethical issues in medical genetics and the provision of genetic services 1995 World Health Organization Geneva
19. Norway Ministry of health and social affairs Biotechnology related to human beings. Rep 25 1993 Norway Ministry of health and social affairs Norway
20. Swiss Academy of medical sciences Medical-ethical guidelines for genetic investigations in humans Bull Med Suisses 74 1993 1454-1458
21. House of Commons Science and Technology Committee Human genetics: The science and its consequences 1995 HM Stationery Office London (part 227-28)
22. Council on ethical and judicial affairs of the American Medical Association Opinion E-2.131. Disclosures of familial risk in genetic testing. In: American Medical Association, Code of medical ethics: Current opinions at http://www.ama-assn.org/ama/pub/category/11963.html (accessed Dec 28, 2004)
23. E Clayton Ethical, legal and social implications of genomic medicine N Engl J Med 349 2003 562-569
24. K Offit E Groeger S Turner et al. The 'duty to warn' a patient's family members about hereditary disease risks JAMA 292 2004 1469-1473
25. D Sulmasy On warning families about genetic risk: The ghost of Tarasoff Am J Med 109 2000 738-740
26. Pate v Threkel, 661 So. 2d 278 FL 1995
27. Safer v estate of Pack, 677 A 2d 1188 (NJ Super AD 1996)
28. Health Insurance Portability and Accountability Act, 104 Public Law N0.104-191,701,110 STAT, 1936n (1996)
29. Essentially yours: Protection of human genetic information in Australia Report 96 March 2003. Australian Law Reform Commission and National Health and Medical Research Council and Australian Health Ethics Committee 2003 Commonwealth of Australia Canberra
30. MJ Friedrich Preserving privacy, preventing disclosure becomes the province of genetics experts JAMA 21 2002 815-819
31. Y Joly B Knoppers B Godard Genetic information and life insurance: A real risk? Eur J Hum Genet 11 2003 561-564
32. E Matloff H Shappell K Brierley et al. What would you do? Specialists' perspectives on cancer genetic testing, prophylactic surgery, and insurance discrimination J Clin Oncol 18 2000 2484-2492
33. L Low S King T Wilkie Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom BMJ 317 1998 1632-1635
34. K Barlow-Stewart D Keays Genetic discrimination in Australia J Law Med 8 2001 250-262
35. E Lapham C Kozma J Weiss Genetic discrimination: Perspectives of consumers Science 274 1996 621-624
36. M Otlowski S Taylor K Barlow-Stewart Australian empirical study into genetic discrimination Genet Med 4 2002 392-395
37. M Hall S Rich Laws restricting health insurers' use of genetic information: Effect on genetic discrimination Am J Hum Genet 66 2000 293-307
38. D Josefson Clinton outlaws genetic discrimination in federal jobs BMJ 320 2000 468
39. National Conference of State legislatures State genetics employment laws 2004 http://www.ncsl.org/programs/health/genetics/ndiscrim.htm (accessed Dec 29, 2004)
40. Council of Europe, C.M, 470th meeting, Principle 6 of Recommendation No R (92)3 on genetic testing and screening for health care purposes in: Texts of the Council of Europe on Bioethical matters (Strasbourg: Directorate of legal affairs, 1993)
41. Resolution of the conference of the data protection commissioners of the Federal Republic of Germany, Oct 26-27. Germany: 1989
42. Nuffield Council on Bioethics the implications of genetic testing for employment (1999) 1999 Human Genetics Advisory Committee London London
43. M Rothstein M Knoppers Legal aspects of genetics, work and insurance in North America and Europe Eur J Health Law 3 1996 143-161
44. Equal Employment Opportunity Commission: Compliance manual 2. Washington: Equal Employment Opportunity Commission, 902-45
45. National Conference of State legislatures Genetics and health insurance: state anti-discrimination laws http://www.ncsl.org/programs/health/ genetics/ndishlth.htm (accessed Dec 29, 2004)
46. W Nowlan A rational view of insurance and genetic discrimination Science 297 2002 195-196
47. K Armstrong B Weber G Fitzgerald et al. Life insurance and breast cancer risk assessment; adverse selection, genetic testing decisions, and discrimination Am J Med Genet 120 2003 359-364
48. E Cook Genetics and the British insurance industry J Med Ethics 25 1999 157-162
49. J Simon Genetic testing and insurance: An international comparison J Int Bioethique 14 2003 59-78
50. Genetic and Insurance Committee, Department of Health, UK www.doh.gov.uk/ genetics/gaic/index.htm (accessed Dec 29, 2004)
51. N Holtzman D Shapiro Genetic testing and public policy BMJ 316 1998 852-856
52. Directive 95/46/EC of the European Parliament and of the council of Oct 24, 1995 http://www2.echo.lu/legal/en/dataprot/directiv/directiv.html (accessed Dec 28, 2004)
53. A Mould Implications of genetic testing: Discrimination in life insurance and future directions J Law Med 10 2003 470-487
54. Australia Law Reform Commission Gene patenting and human health. Discussion paper 68, February, 2004 2004 Australia Law Reform Comission Canberra
55. Organisation for Economic Co-operation and Development Genetic inventions, intellectual property rights and licensing practices: evidence and policies 2002 OECD Paris
56. Nuffield Council on Bioethics The ethics of patenting DNA (2002) 2002 Nuffield Council on Bioethics London
57. Human Genetics Society of Australasia HGSA position paper on the patenting of genes www.hgsa.com.au/policy/patgen.html 2001 (accessed Dec 28, 2004)
58. J Paradise European opposition to exclusive control over predictive breast cancer testing and the inherent implications for US patent law and public policy: A case study of the Myriad genetics BRCA patent controversy Food Drug Law J 59 2004 133-154
59. A Lecrubier Patents and public health European Molecular Biology Organisation 3 2002 1120-1122
60. C Tilstone Gene patents: A myriad of issues Lancet Oncol 5 2004 392
61. Genetic Technologies Limited, Genetic susceptibility testing: A third progress report Genetic Technologies Limited http://www.gtg.com.au/ index_archivenews.asp?art_id=465&menuid=210.010 (accessed April 12, 2005)
62. American Society of Human Genetics Board of Directors, Advisory Council on Medical Genetics Points to consider: Ethical, legal and psychosocial; implications of genetic testing in children and adolescents Am J Hum Genet 57 1995 1233-1241
63. Working party of the Clinical Genetics Society (UK) The genetic testing of children J Med Genet 31 1994 785-797
64. Human Genetics Society of Australasia Predictive genetic testing in children and adolescents http://www.hgsa.com.au/policy/ptca.html (accessed Dec 28, 2004)
65. J Savulescu Predictive genetic testing in children Med J Aust 175 2001 379-381
66. R Robertson J Savulescu Is there a case in favour of predictive testing of children? Bioethics 15 2001 26-49
67. K Sermon A Van Steirteghem I Liebaers Preimplantation genetic diagnosis Lancet 363 2004 1633-1641
68. American Society of Reproductive Medicine Ethics Committee Sex selection and preimplantation genetic diagnosis Fertil Steril 72 1999 595-598
69. J Robertson Extending preimplantation genetic diagnosis: The ethical debate Human Reprod 18 2003 465-471
70. S Rechitsky O Verlinsky A Chistokhina et al. Preimplantation genetic diagnosis for cancer predisposition Reprod Biomed online 5 2002 148-155