ch
How can truly informed consent for genetic testing be obtained in public health practice (versus clinical practice, in which personal contact and the opportunity for one-on-one interaction is greater)?
How does informed consent for genetic testing in public health practice differ from informed consent for other public health services?
Should genetic counseling services be provided as part of public health practice even when risks associated with different genetic polymorphisms and mutations vary widely? And how can such services be provided?
How can stored samples on large scale populations (e.g., newborn screening blood spots) be used for epidemiologic research?
Under what circumstances is new consent for archived specimens needed for public health investigations?
Under what circumstances, if any, is it appropriate to make specimens anonymous?
Do situations occur in public health when genetic testing could be done on identifiable specimens without informed consent?
II. Legal issues for public health genetics programs
Should genetic programs in the public health setting be mandated by law?
What legal protections can be used to ensure confidentiality to persons participating in screening programs?
What laws and regulations are needed to ensure the safety and effectiveness of genetic tests?
III. Population access to clinical and preventive services
How can population access to genetic tests and services be ensured?
IV. Privacy concerns in population-based surveillance programs
How can privacy and confidentiality be maintained in the public health setting?
How should population-based disease registries be handled? What are their immediate and long-term benefits? What are their immediate and long-term risks?
How can public health agencies maximize benefits and minimize the risks associated with such registries?
V. Group stigmatization
How can concerns about potential stigmatization of population groups that result from research or testing programs be addressed?
Source: CDC (1997) (11).
- Collins FS. Preparing health professionals for the genetic revolution. JAMA 1997;278:1285-1286.
- Collins FS, Patrinos A, Jordan E, et al. New goals for the U.S. Human Genome Project: 1998-2003. Science 1998;282:682-689.
- Center for Medical Genetics, Johns Hopkins University and National Center for Biotechnology Information, National Library of Medicine. Online Mendelian Inheritance in Man, OMIMT [database]. 1999;World Wide Web URL: http://www.ncbi.nlm.nih.gov/omim.
- Pagon RA, Covington M, Tarczy-Hornoch P. Helix. A directory of medical genetics laboratories. World Wide Web.
- Coughlin SS. The intersection of genetics, public health, and preventive medicine. Am J Prev Medicine 1999;16:89-90.
- Khoury MJ. Genetic epidemiology and the future of disease prevention and public health. Epidemiol Rev 1997;19:175-180.
- Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention. Genetics in the news. Available from URL: http://www.cdc.gov/genetics/update/index.htm.
- Laken SJ, Petersen GM, Gruber SB, et al. Familial colorectal cancer in Ashkhenazim due to hypermutable tract in APC. Nat Genet 1997;17:79-83.
- Cancer Research Foundation of America. Cancer Research Foundation of America Web site. 1998.
- Khoury MJ, and the CDC Genetics Working Group. From genes to public health: applications of genetics in disease prevention. Am J Public Health 1996;86:1717-1722.
- Centers for Disease Control and Prevention. Translating advances in human genetics into public health action: a strategic plan (1997). Available from URL: http://www.cdc.gov/genetics/about/reports/1997.htm
- Institute of Medicine. The future of public health. Washington, DC: National Academy Press, 1988.
- University of Washington, School of Public Health and Community Medicine. Multidisciplinary program in public health genetics in the context of law, ethics and policy. Available from URL: .
- University of Michigan. Public health genetics. Internet URL: .
- Ten Kate L. Editorial. Community Genetics 1998;1:1-2.
- King RA. Genetics and the practice of medicine