Genetic Research Involving Elders

Genetic research (i.e., the identification of genetic variants) has the potential for discovering important preventive and therapeutic interventions for diseases associated with aging. For example, the identification of genetic mutations in familial Alzheimer disease and other diseases has yielded information regarding the mechanisms of the sporadic, yet more prevalent, forms of these diseases (Banks, D. and Fossel, M., 1997; Blacker, D., et al., 1997; Longo, V. and Finch, C., 2002). Hence, it is not surprising that the interest in and conducting of genetic research in elders are growing.

While the aforementioned principles of research also apply to genetic research, the implications of genetic information obtained through research can be complex for subjects, their blood relatives, clinicians, and investigators (American Society of Human Genetics, 1996).

Indeed, genetic research raises a number of important ethical concerns, particularly those related to informed consent and subject confidentiality that are applicable to all subjects regardless of age.

The American Society of Human Genetics (ASHG) has published a statement on informed consent that provides guidance to investigators who wish to conduct genetic research involving human subjects including elders (American Society of Human Genetics, 1996). Subjects should be informed not only about the physical discomforts associated with collecting specimens (e.g., blood), they should also be informed about the types of information that can result from genetic research including potentially unexpected findings (e.g., carrier status, paternity, children affected by genetic disease, etc.). Needless to say, these findings may be alarming to subjects and, hence, geneticists and/or genetic counselors should be directly involved or available in genetic studies in order to communicate accurately the results to subjects. Subjects should be informed if specimens will be stored for future studies and should be given options regarding the scope of future studies involving the specimens (including after the subject's death). Investigators should not seek ''blanket consent'' for unspecified future genetic

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