Informing technology policy decisions: The US Human Genome project's ethical, legal, and social implications programs as a critical case

Technology in Society

Volumn 24, Issue 1-2, 2002, Pages 111-132

  McCain, Lauren ^a  

^a UNIVERSITY OF COLORADO   (United States)

Author keywords

And social aspects; Human gene mapping political; Human genome project political; Moral; Moral and ethical

Indexed keywords

DECISION MAKING; SOCIETIES AND INSTITUTIONS;

HUMAN GENOME RESEARCH;

ECONOMIC AND SOCIAL EFFECTS;

ETHICS; RESEARCH; SCIENCE AND TECHNOLOGY; SOCIAL IMPACT; TECHNOLOGY POLICY;

UNITED STATES;

EID: 6444244368     PISSN: 0160791X     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0160-791X(01)00048-3     Document Type: Article

References (87)

1. Opening session remarks
2. The genome program's conscience
3. Hearing on the possible uses and misuses of genetic informations: Testimony before the house subcommittee on government information, justice, and agriculture, 17 Oct 1991
4. The human genome project: View for the national institutes of health
5. Are we the sum of our genes?
6. Human genome research and the public interest: Progress notes on an American science policy experiment
7. Self-critical federal science? The ethics experiment within the US human genome project
8. State supported mass genetic screening programs
9. Understanding our genetic inheritance
10. A new five-year plan for the US human genome project
11. Testimony before the senate subcommittee on science, technology, and space
12. Shattuck lecture - Medical and societal consequences of the human genome project
13. Testimony before the subcommittee on science, technology, and space
14. Remarks by the President
15. The ethical, legal, and social implications program of the national center for human genome research: A missed opportunity?
16. A new five-year plan for the US human genome project
17. New goals for the US human genome project: 1998-2003
18. A physical map of the human genome
19. The sequence of the human genome
20. Complete cloning of the Duchenne Muscular Dystrophy (DMD) cDNA and preliminary genomic organization of the DMD gene in normmal and affected individuals
21. Identification of the cystic fibrosis gene: Cloning and characterization of complementary DNA
22. A novel gene containing a trinucleotide repeat that is expanded and unstable on huntington's disease chromosomes
23. A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1
24. Should we test everyone for haemochromatosis?
25. Clinical screening as compared with DNA analysis in families with multiple endocrine neoplasia type 2A
26. The new genetics: Genetic testing and public policy
27. The impact of genetic testing on primary care: Where's the beef?
28. Incorporation of clinical genetic services into the public health arena: Educational strategies
29. The impact of managed care on genetic testing laboratories in the United States
30. Genetics education for primary care providers in community health settings
31. Sickle cell screening policies as portent: How will the human genome project affect public sector genetic services?
32. Researchers uncover genetic discrimination
33. Drafting the genetic privacy act: Science, policy, and practical considerations
34. The genetic privacy act: A proposal for national legislation
35. Genetic discrimination and the law
36. Genetic discrimination and the public entities and public accommodations titles of the Americans with disabilities act
37. Discrimination as a consequence of genetic testing
38. Individual, family, and societal dimensions of genetic discrimination: Case history analysis
39. Human genome research in an interdependent world
40. Public policy implications of scientific research: The human genome initiative and the future of insurance
41. Genetic discrimination: Perspectives of consumers
42. Law restricting health insurers' use of genetic information: Impact on genetic discrimination
43. Patients' fear of genetic discrimination by health insurers: The impact of legal protections
44. Genetic information and health insurance: State legislative approaches
45. Genetic discrimination and health insurance: An urgent need for reform
46. Genetic information and the workplace: Legislative approaches and policy challenges
47. Genetic privacy and discrimination: A comprehensive survey of state legislation
48. EEOC sues to halt worker gene tests
49. Families sue hospital, scientist for control of canavan gene
50. Disease gene patents: Overcoming unethical constraints on clinical laboratory medicine
51. Sounding board: Secrecy in medical research
52. Survey confirms fears about licensing of genetic tests (letter)
53. Ethical and legal issues in the 21st century
54. Intellectual property issues in genomics
55. Can patents deter innovation? The anticommons in biomedical research
56. Those who forget their history: Lessons from the human genome quest
57. Usable information for policy: An appraisal of the US global change research program
58. Genetic testing for cystic fibrosis