Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-19T07:05:44.812Z Has data issue: false hasContentIssue false
  • English
  • Français

Empowering Individuals in the Prevention of Genetic Disease

Published online by Cambridge University Press:  10 March 2009

Susan P. Pauker
Susan P. Pauker
Affiliation:
Harvard Medical School and Harvard Pilgrim Health Care
Get access Rights & Permissions [Opens in a new window]

Abstract

As the International Human Genome Project nears the term of a long gestation, the ethical and social implications of complex new genetic technologies will require a new breed of clinicians for a safe delivery. Clinical genetic care has been time intensive as performed by medical specialists. Empowering individuals to take advantage of new opportunities for genetic testing to prevent disease will require clinician education and decision support in the context of individual values.

Type
Special Section: The Consumer And Technology
Information
International Journal of Technology Assessment in Health Care , Volume 14 , Issue 1 , Winter 1998 , pp. 38 - 46
Copyright
Copyright © Cambridge University Press 1998

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

1.Bachman, P., & Schoen, E.Managed Genetic Care in a Large HMO. HMO Practice, 1996, 10, 54–59.Google Scholar
2.Council on Ethical and Judicial Affairs. Testing children for genetic status. Code of Medical Ethics Reports. Chicago: American Medical Association, 1995. Report 66.Google Scholar
3.Ganiats, L.Medical Decision Making 1996, 16, 45–50.CrossRefGoogle Scholar
4.Pauker, S. P., & Pauker, S. G.. Prenatal diagnosis: A directive approach to genetic counseling using decision analysis. Yale Journal Biology and Medicine 1977, 50, 275–289.Google ScholarPubMed
5.Pauker, S. P., & Pauker, S. G. The amniocentesis decision: An explicit guide for parents. In Epstein, C. J., Curry, C. J. R., Packman, S., et al. (eds.), Risk, communication, and decision making in genetic counseling, Part C of Annual Review of Birth Defects, 1978. Birth Defects Original Article Series XV:5C. New York: Alan R. Liss, 1979, 23, 289–324.Google Scholar
6.Pauker, S. P., & Pauker, S. G. The amniocentesis decision: Ten years of decision analytic experience. In Evers-Kiebooms, G., Cassiman, J. J., Vandenberghe, H., & D'ydewalle, G., eds., Genetic risk, risk perception, and decision making. Birth Defects: Original Article Series. Birth Defects Foundation. New York: Alan R. Liss, 1987, 23, 151–169.Google Scholar
7.Reinhard, J.Genetic testing: A challenge to the preventive paradigm. HMO Practice, 1996, 10, 50–53.Google Scholar
8.Rosenquist, T. H., Ratashak, S. A., & Selhub, J.Homocysteine induces congenital defects of the heart and neural tube: Effect of folic acid. Proceedings of the National Academy of Sciences of the United States of America. 1996, 93, 152227–32.Google Scholar
9.Shaw, G. M., O'Malley, C. D., Wasserman, C. R., et al. Maternal periconceptional use of multivitamins and reduced risk for conotruncal heart defects and limb deficiencies among offspring. American Journal of Medical Genetics. 1995, 59, 536–45.CrossRefGoogle ScholarPubMed
10.Szolovits, P., Pauker, S. P. Pedigree analysis for genetic counseling. Medical Informatics: Proceedings of the 7th International Conference. Amsterdam. Elsevier Press, 1992, 679–83.Google Scholar