The objective of this module is to provide information and generate discussion about genetics, ethics, and elderly patient populations.
With the advance of genetic technology, the relationship between genetics and disease has become a more integral part of health care. Genetic testing is one tool that has emerged to help identify carriers of genetic diseases.In principle, genetic testing can enable clinicians and researchers to better understand and predict the onset of diseases. Further, prevention and delay of symptoms stemming from these diseases can be importantly tied to early detection.
Although genetic testing has the potential to improve the quality of health care greatly, there are a number of debilitating diseases affecting the elderly for which testing may not be useful at this time.One main reason is that there are tests available for diseases that are currently incurable.With regard to Alzheimer’s disease, for example, there are only very few circumstances where genetic testing can help to predict the onset of the disease.In rare situations, genetic factors, such as having an allele of Apolipoprotein E (APOE), are believed to be importantly connected to the onset of Alzheimer’s disease, especially in cases where the disease manifests itself early in a patient’s life.Yet in most Alzheimer’s cases, genetic tests offer little or no predictive value. Further, even after the disease has been detected, therapies to treat its symptoms have proved to be largely ineffective.In fact, the American Geriatrics Society does not endorse genetic testing as part of the routine care for Alzheimer’s patients because the benefit of using such tests has not been clearly established.
Another concern relating to genetic testing is that elderly patients might have a difficult time obtaining quality health insurance if it is revealed that they are carriers for a genetic disease.If long-term care insurance is required, for example, they might not be eligible for such insurance if a genetic test reveals that they are at risk for Alzheimer’s disease. Alternatively, premiums could rise if the test’s results have been revealed to an insurance company.
There are measures in place to help protect patients from losing control over their medical records, including results from genetic tests.For example, the Health Insurance Portability and Accountability Act (HIPAA) is a federal law that is supposed to prevent the unauthorized use of medical information. Further, in 2003, a bill came before Congress specifically aimed at preventing genetic discrimination. Patients are, and should be, concerned about sharing their genetic information with employers and insurance companies because of the potential for bad consequences.
Due to the nature of genetic information, the results of genetic tests can have a profound impact on a patient’s family as well. Although patients do not typically have a duty to inform their relatives that they are undergoing genetic testing, the results from such testing might reveal that family members are carriers for a genetic disease.This information could potentially be beneficial if measures can be taken to prevent or delay the onset of the disease.Yet feelings of guilt, anxiety, and frustration could emerge within the family along with the danger that the revealed information could affect a relative’s ability to retain insurance and employment.
The use of elderly subjects in genetics research raises several important ethical issues. There are a variety of shortcomings, for example, that can plague the consent process for genetics research, including that researchers might not be sufficiently educated about how to disclose the benefits and risks associated with the research. Moreover, since the current elderly population received its education before or around the time that DNA was first being identified as the mechanism of heredity, it is unlikely that they have formally learned about such matters. Further, elderly patients who suffer from memory loss might have difficulty recalling information that has been provided to them, which means that they might not fully appreciate how participation in genetics research could affect them and their families. Consequently, the details of a research protocol must be explained clearly and thoroughly during the consent process so that potential subjects understand what is involved and potential dangers are averted.
Does being carrier for a genetic disease necessarily entail that the disease will manifest itself?In general, it does not. Being a carrier usually entails a higher risk for developing a disease; it does not typically indicate that you will inevitably suffer from it. Genetic counseling services can assist patients and their families to cope with the results of a genetic test by explaining that being a disease carrier does not necessarily mean that a grave prognosis will follow.
2) If researchers have obtained consent to test tissue samples for a research protocol, is it morally permissible to later re-test those samples for different research purposes without obtaining consent?In general, tissue samples should not be used in research unless consent has been given to do so.If researchers believe that tissue samples might be useful for future genetics research, it should indicated on the original protocol’s consent forms that they intend to to perform additional tests on the provided tissue samples.The usual stipulation for this type of arrangement is that identifying information will be removed from the samples before they are tested.
Bioethics Resources on the Web: Genetics (sponsored by the National Institutes of Health)
Brown SM. The ethics of medical genomics. From Essentials of Medical Genomics. New Jersey: Wiley-Liss, Inc., 2003, pp: 215-35.
The Genetic Privacy Act and Commentary (sponsored by the Department of Energy)
Rothstein MA, Ed. Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era. Yale University Press, 1999.
Human Genome News: Ethical, Legal, and Social Issues (sponsored by the Department of Energy)
Human Genome Project Information: Ethical, Legal, and Social Issues (sponsored by the Department of Energy)
Miller PS. Genetic discrimination in the workplace. Journal of Law, Medicine & Ethics 1998;26:189-97.
Post SG. Future scenarios for the prevention and delay of Alzheimer disease onset in high-risk groups: An ethical perspective. American Journal of Preventive Medicine 1999;16(2):105-10.
Wendler D, Prasad K, Wilfond B.Does the current consent process minimize the risks of genetics research? American Journal of Medical Genetics 2002;113:258-62.