Prenatal Diagnosis and Public Policy

  • Mark S. Thompson

Abstract

Public policy analysis cannot set social values or make the hard choices that spring from them. It can, however, lay out alternatives in a systematic way and can establish a framework for decision through the subsequent ascription of values. Fashioning such a structure for policy determination in prenatal diagnosis is our initial concern. We derive a format recognizing the technical parameters of diagnostic tests and allowing for the appropriate insertion of values by citizens, physicians, and governmental decision makers. Prevailing societal priorities and the trends in them indicate that the consensus will in the contemporary United States is to support and to expand programs of voluntary amniocentesis. We discuss briefly how this might be done.

Keywords

Hydrocarbon Income Anemia Expense Capron 

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References

  1. Acton, J., 1976, Measuring the monetary value of lifesaving programs. Law Contemp. Probl. 40(4):46.CrossRefGoogle Scholar
  2. Ampola, M. G., Mahoney, M. J., Nakamura, E. K., et al., 1974, In utero treatment of methylmalonic acidemia with vitamin B-12, Pediat. Res. 8:387.CrossRefGoogle Scholar
  3. Borgaonkar, D. S., and Shah, S. A., 1974, The XYY chromosome male—or syndrome? Prog. Med. Genet. 10:135.Google Scholar
  4. Childs, B., 1975, Genetic screening. Ann. Rev. Genet. 9:67.CrossRefGoogle Scholar
  5. Conley, R., and Milunsky, A., 1975, The economics of prenatal genetic diagnosis, in: The Prevention of Genetic Disease and Mental Retardation (A. Milunsky, ed.), Saunders, Philadelphia.Google Scholar
  6. Cooper, T., 1976, Implications of findings from the Amniocentesis Registry for Public Policy, Publ Health Rep. 91:116.Google Scholar
  7. Culliton, B. J., 1975, Amniocentesis: HEW backs test for prenatal diagnosis of disease. Science 190:537.PubMedCrossRefGoogle Scholar
  8. Druckman, E., 1976, personal communication, results of a survey.Google Scholar
  9. Emery, A. E., Elliott, D., Moores, S. M., et al., 1974, A medical genetic register system (RAPID), J. Med. Genet. 11:145.PubMedCrossRefGoogle Scholar
  10. Erbe, R. W., 1975, Screening for the hemoglobinopathies, in: The Prevention of Genetic Disease and Mental Retardation (A. Milunsky, ed.), Saunders, Philadelphia.Google Scholar
  11. Genetics Society of Canada, Canadian Pediatrics Society, and Society of Obstetricians and Gynecologists of Canada, 1974, Canadian guidelines for antenatal diagnosis of genetic disease: A joint statement, Can. Med. Assoc. J. 111:180.Google Scholar
  12. Gerald, P. S., 1976, Sex chromosome disorders, N. Engl. J. Med. 294:706.PubMedCrossRefGoogle Scholar
  13. Glass, N., 1975, Economic aspects of the prevention of Down’s syndrome, in: Systems Aspects of Health Planning (N. T. J. Bailey and M. Thompson, eds.), p. 203–213, North-Holland, Amsterdam.Google Scholar
  14. Green, H. P., and Capron, A. M., 1974, Issues of law and public policy, in: Experimental, Social and Legal Dimensions of Screening for Human Genetic Disease (D. Bergsma, ed.), pp. 57- 84, Stratton Intercontinental Medical Book Corporation, New York.Google Scholar
  15. Guthrie, R., 1972, Mass screening for genetic disease, Hosp. Pract. 7(6):93.Google Scholar
  16. Heymann, P., and Holtz, S., 1975, The severely defective newborn: The dilemma and the decision processes, Publ. Policy 23:381.Google Scholar
  17. Kellerman, G., and Shaw, C. R., 1973, Aryl hydrocarbon hydroxylase inducibility and bronchogenic carcinoma, Am. J. Hum. Genet. 25:40A.Google Scholar
  18. Klarman, H., 1965, Syphills control programs, in: Measuring Benefits of Government Investments (R. Dorfman, ed.), pp. 367–410, Brookings Institution, Washington,D.C.Google Scholar
  19. Leek, I., and Record, R. G., 1966, Seasonal incidence of anencephalus, Br. J. Prev. Soc. Med. 20:67.Google Scholar
  20. Lubs, H. A., and Ruddle, F. H., 1970, Chromosomal abnormalities in the human population: Estimation of rates based on New Haven newborn study. Science 169:495.PubMedCrossRefGoogle Scholar
  21. McDonald, A. D., 1973, Severely retarded children in Quebec: Prevalence, causes, and care. Am. J. Ment. Defic. 78:205.PubMedGoogle Scholar
  22. McKusick, V. A., 1969, Family-oriented follow-up, J. Chron. Dis. 22:1.PubMedCrossRefGoogle Scholar
  23. McNeil, B., and Adelstein, J., 1975, Value of case finding in hypertensive renovascular disease, N. Engl. J. Med. 293:221.PubMedCrossRefGoogle Scholar
  24. Massachusetts Department of Public Health, 1974, Cost-benefit analysis of newborn screening for metabolic disorders, N. Engl. J. Med. 291:1414.CrossRefGoogle Scholar
  25. Milunsky, A., 1973, The Prenatal Diagnosis of Hereditary Disorders, Thomas, Springfield, 111.Google Scholar
  26. Milunsky, A., 1975a, Risk of amniocentesis for prenatal diagnosis, N. Engl J. Med. 293:932.PubMedCrossRefGoogle Scholar
  27. Milunsky, A., ed., 1975b, The Prevention of Genetic Disease and Mental Retardation, Saunders, Philadelphia.Google Scholar
  28. Milunsky, A., 1976a, Medico-legal issues in prenatal genetic diagnosis, in: Genetics and the Law (A. Milunsky and G. J. Annas, eds.), pp. 53–60, Plenum Press, New York.CrossRefGoogle Scholar
  29. Milunsky, A., 1976b, Prenatal diagnosis of genetic disorders, N. Engl. J. Med. 295:377.PubMedCrossRefGoogle Scholar
  30. Milunsky, A., 1977, Know Your Genes, Houghton Mifflin, Boston.Google Scholar
  31. Milunsky, A., and Annas, G. J., (eds.), 1976, Genetics and the Law, pp. v-vii. Plenum Press, New York.Google Scholar
  32. Milunsky, A., Littlefield, J. W., Kanfer, J. N., et al., 1970, Prenatal genetic diagnosis (article in three parts),N. Engl. J. Med. 283:1370, 1441, 1498.PubMedCrossRefGoogle Scholar
  33. Moore, M. H., 1977, Buy and Bust: The Effective Regulation of an Illicit Market in Heroin, Heath, Lexington, Mass.Google Scholar
  34. Motulsky, A. G., 1968, Population genetics of mental retardation, in: Expanding Concepts in Mental Retardation, Thomas, Springfield, 111.Google Scholar
  35. National Academy of Sciences, 1975, Genetic Screening: Programs, Principles and Research, National Academy of Sciences, Washington, D.C.Google Scholar
  36. National Foundation-March of Dimes, 1976, Prenatal Diagnosis and Background Materials (news release). White Plains, N.Y., July 16. SGoogle Scholar
  37. National Opinion Research Center, 1976, Limited approval of legal abortion. Current Opin. 4:18.Google Scholar
  38. Pauly, M. V., 1968, The economics of moral hazard: Comment, Am. Econ. Rev. 58:531.Google Scholar
  39. Pinsky, L., 1975, Carrier detection in X-linked disease, in: The Prevention of Genetic Disease and Mental Retardation (A. Milunsky, ed.), Saunders, Philadelphia.Google Scholar
  40. Powledge, T. M., 1974, Genetic screening as a political and social development, in: Experimental Social and Legal Dimensions of Screening for Human Genetic Disease (D. Bergsma, ed.), pp. 25–55, Stratton Intercontinental Medical Book Corporation, New York.Google Scholar
  41. Raiffa, H., 1968, Decision Analysis: Introductory Lectures on Choices Under Uncertainty, Addison-Wesley, Reading, Mass.Google Scholar
  42. Sackett, D. L., Haynes, R. B., Gibson, E. S., et al., 1975, Randomised clinical trial of strategies for improving medication complicance in primary hypertension. Lancet 1:1205.PubMedCrossRefGoogle Scholar
  43. Schelling, T. C., 1968, The life you save may be your own, in: Problems in Public Expenditure Analysis (S. Chase, ed.), pp. 127–176, Brookings Institution, Washington, D.C.Google Scholar
  44. Shepard, D. S., and Moseley, T. A. E., III, 1976, Mailed versus telephoned appointment reminders to reduce broken appointments in a hospital outpatient department, Med. Care 14:268.PubMedCrossRefGoogle Scholar
  45. Shine, I., and Lai, S., 1973, Need for screening as related to frequency of disease, N. Engl. J. Med. 287:273.Google Scholar
  46. Simpson, N. E., Dallaire, L., Miller, J. R., et al., 1976, Prenatal diagnosis of genetic disease in Canada: Report of a collaborative study. Can. Med. Assoc. J. 115:739.PubMedGoogle Scholar
  47. Stevenson, A. C., Davison, B. C. C., and Oakes, M. W., 1970, Genetic Counseling, Lippincott, Philadelphia.Google Scholar
  48. Taylor, D., 1975, Press summary, p. 2, National Institutes of Heath, Bethesda, Md.Google Scholar
  49. Thompson, M., 1975, Systems analysis for the evaluation of bio-medical research, in: Systems Aspects of Health Planning (N. T. J. Bailey, and M. Thompson, eds.), pp. 165–176, North- Holland, Amsterdam.Google Scholar
  50. Thompson, M., 1976, Personal communication in her capacity as Director of Marketing Information Services, National Association of Blue Shield Plans.Google Scholar
  51. United States Code, 1976, Public Law 94–278, Health Research and Health Services Amendments of 1976, Title IV: Genetic Diseases.Google Scholar
  52. United States House of Representatives, 1976, 94th Congress, second session, H.R. 8489.Google Scholar
  53. World Health Organization, 1969, Genetic counseling, WHO Tech. Rep. 416:1.Google Scholar

Copyright information

© Aubrey Milunsky 1979

Authors and Affiliations

  • Mark S. Thompson
    • 1
  1. 1.Health Services and Center for the Analysis of Health PracticesHarvard School of Public HealthBostonUSA

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