Public participation in medical policy-making and the status of consumer autonomy: The example of newborn-screening programs in the United States

American Journal of Public Health

Volumn 87, Issue 8, 1997, Pages 1280-1288

  Hiller, Elaine H ^a   Landenburger, Gretchen ^c   Natowicz, Marvin R ^a,b  

^a UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

^c UNIVERSITY OF CONNECTICUT HEALTH CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

GENETIC SCREENING; HEALTH CARE PLANNING; HEALTH CARE POLICY; INFORMATION SYSTEM; INFORMED CONSENT; LAW; NEWBORN SCREENING; PUBLIC OPINION; REVIEW; SCREENING TEST; UNITED STATES;

EID: 0030746725     PISSN: 00900036     EISSN: None     Source Type: Journal    
DOI: 10.2105/AJPH.87.8.1280     Document Type: Review

References (64)

1. Rodwin MA. Patient accountability and quality of care: lessons from medical consumerism and the patients' rights, women's health and disability rights movements. Am J Law Med. 1994:20:147-167.
2. Holman HR, Dutton DB. A case for public participation in science policy formation and practice. South Calif Law Rev. 1978;51: 1505-1534.
3. Lappe M, Martin PA. The place of the public in the conduct of science. South Calif Law Rev. 1978;52:1535-1554.
4. Holtzman NA. Public participation in genetic policy making: the Maryland Commission on hereditary disorders. In: Milunsky A, Annas GJ, eds. Genetics and the Law II. New York, NY: Plenum; 1980;247-258.
5. Chavkin W. Preventing AIDS, targeting women. Health/PAC Bull. 1990;20:19-23.
6. Kantrowitz A. Controlling technology democratically. Am Scientist. 1975;63:505-509.
7. Casper B. Technology policy and democracy: is the proposed science court what we need? Science. 1976;19:29-35.
8. Greenfield S, Kaplan SH, Ware JE, Martin Yano E, Frank HJL. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3:448-457.
9. Brody DS, Miller SM, Lerman CE, Smith DG, Caputo GC. Patient perception of involvement in medical care: relationship to illness attitudes and outcomes. J Gen Intern Med. 1989;4:506-511.
10. Kaplan SH, Greenfield S, Ware JE. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care. 1989;27(suppl):S110-S127.
11. Heymann SJ. Patients in research: not just subjects, but partners. Science. 1995;269: 797-798.
12. Coates JF. Why public participation is essential in technology assessment. Public Admin Rev. 1975;35:67-69.
13. Carroll JD. Participatory technology. In: Kuehn TJ, Porter AL, eds. Science, Technology, and National Policy. Ithaca, NY: Cornell University Press; 1981:416-434.
14. Whitten CF. Sickle cell programming - an imperiled promise. N Engl J Med. 1973; 288:318-319.
15. King PA. The past as prologue: race, class, and gene discrimination. In: Annas GJ, Elias S, eds. Gene Mapping: Using Law and Ethics as Guides. New York, NY: Oxford University Press; 1992:94-111.
16. Andrews LB. State Laws and Regulations Governing Newborn Screening. Chicago, Ill: American Bar Foundation; 1985.
17. Committee for the Study of Inborn Errors of Metabolism. Genetic Screening: Programs, Principles, and Research. Washington, DC: National Academy of Sciences; 1975.
18. Newborn Screening Committee, The Council of Regional Networks for Genetic Services. National Newborn Screening Report - 1991. New York: Council of Regional Networks for Genetic Services; 1994.
19. Therrell B, ed. Infant Screening [newsletter. Austin, Tex].
20. Alaska Stat §18.15.200.
21. State Department of Health Services Newborn Screening Program Regulations, Cal Code Regs §17.9.6504.
22. DC Code Ann §§6.313, 6.314.
23. Rules of the Department of Health and Rehabilitative Services, Fla Admin Code §10J.8.002.
24. Rules of the Birth Defects Institute. Iowa Dept of Public Health §4.641.4.2.
25. Regulations for phenylketonuria, congenital hypothyroidism and galactosemia, Kan Admin Regs §28.4.512.
26. Regulations governing testing of newborns for treatable diseases, Massachusetts Dept of Public Health §105 CMR 270.009.
27. Rules governing testing of infants for inborn metabolic errors, Minnesota Dept of Health §4615.0500.
28. Rules governing testing for metabolic and genetic disorders, Missouri Dept of Health §19 CSR 20.36.010.
29. NM Stat Ann §24.1.6; newborn screening regulations, New Mexico Dept of Health §DOH 92.02.301.
30. Ohio Rev Code Ann §3701.501; rules governing testing of newborn children for genetic, endocrine, and metabolic disorders, Ohio Admin Code §3701.45.01.
31. Rules governing screening and follow-up for diseases of the newborn, Pennsylvania Dept of Health §28.11.
32. Rules governing newborn screening, Wash Admin Code §246.650.020.
33. Wis Stat §146.02.
34. California Health and Safety Code. Cal Codes Ann §1.5.151.
35. Annas GJ. The Rights of Patients. Totowa, NJ: Humana Press; 1992:83-103.
36. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. New York, NY: Oxford University Press; 1994:120-188.
37. Rules governing testing for inherited disorders in the newborn. Georgia Dept of Human Resources §290.5.24.03.
38. Md Code Ann §§13.104, 13.109: regulations governing screening for treatable disorders in the newborn child, Maryland Dept of Health and Mental Hygiene §COMAR 10.39.04.
39. Wyo Stat Ann §35.4.801.
40. Tenn Code Ann §68.5.503; rules of the Tennessee Dept of Health §1200-15-1-03.
41. Wilfond BS, Nolan K. National policy development for the clinical application of genetic diagnostic technologies: lessons from cystic fibrosis. JAMA. 1993;270: 2948-2954.
42. Natowicz MR, Alper JS. Genetic screening: triumphs, problems, and controversies. J Public Health Policy. 1991;12:475-491.
43. Elias S, Annas GJ. Reproductive Genetics and the Law. Chicago, Ill: Year Book Medical Publishers; 1987:53-81.
44. Screening and Counseling for Genetic Conditions: A Report on the Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs. Washington, DC: President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research; 1983.
45. Annas GJ. Judging Medicine. Clifton, NJ: Humana Press; 1988:108-113.
46. Fost N. Ethical implications of screening asymptomatic individuals. FASEB J. 1992; 6:2813-2817.
47. Clayton EW. Issues in state newborn screening programs. Pediatrics. 1992;90: 641-645.
48. Kaback M, Lim-Steele J, Dabholkar D, Brown D, Levy N, Zeiger K. Tay Sachs disease - carrier screening, prenatal diagnosis, and the molecular era: an international perspective, 1970-1993. JAMA. 1993;270: 2307-2315.
49. Walters L. A national advisory committee on genetic testing and screening. In: Annas GJ, Elias S, eds. Gene Mapping: Using Law and Ethics as Guides. New York, NY: Oxford University Press; 1992;255-268.
50. Stone R. Powerful lay body to oversee U.K. genetics? Science. 1995;269:291.
51. New human genetics committee will advise British government. Nature. 1996;381: 640. News in Brief.
52. Myklebost O. First for biotech. Nature. 1996;384:208.
53. Council of Regional Networks for Genetic Services. Newborn Screening System Guidelines. Phoenix, Ariz: Council of Regional Networks for Genetic Services; 1990.
54. Committee on Assessing Genetic Risks, Division of Health Sciences Policy, Institute of Medicine. Assessing Genetic Risks: Implications for Health and Social Policy. Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG, eds. Washington, DC: National Academy Press; 1994.
55. Arnstein SR. A working model for publicparticipation. Public Admin Rev. 1975;35: 70-73.
56. Krimsky S. Environmental Hazards. Dover, Mass: Auburn House Publishing; 1988:180-238.
57. Brown P, Mikkelson EJ. No Safe Place: Toxic Waste, Leukemia, and Community Action. Los Angeles, Calif: University of California Press; 1990:125-163.
58. Reichel W, Franch MS, Solon J. Survey research guiding public policy making in Maryland: the case of Alzheimer's disease and related disorders. Exp Gerontology. 1986;21:439-448.
59. Clayton EW. Screening and treatment of newborns. Houston Law Rev. 1992;29:85-148.
60. Annas GJ. Mandatory PKU screening: the other side of the looking glass. Am J Public Health. 1982;72:1401-1403.
61. Faden R, Holtzman NA, Chwalow AJ. Parental rights, child welfare and public health: the case of PKU screening. Am J Public Health. 1982;72:1396-1400.
62. Regulations pertaining to the testing of newborns for hereditary diseases, §13, Delaware Division of Public Health.
63. Kentucky Rev Stat Ann §214.155.
64. Regulations governing neonatal screening for inborn metabolic errors and hemoglobinopathies, South Carolina Dept of Health and Environmental Control §61.80.