Adult-onset field may spark greater ethics role
Counselor qualifications still being formed
Recent advances in discovering genetic links to Alzheimer’s disease (AD) and other adult-onset diseases could mean that ethics committees will be playing a larger role in educating both patients and caregivers for this new field.
In fact, genetic counselors most likely will develop a particular disease specialty to help solve ethical problems associated with genetic testing, experts tell Medical Ethics Advisor.
"Genetic counselors are best suited for the job of educating physicians, staff, patients, and their families, but even the counselors need to develop expertise in a particular area," says Gail Geller, ScD, associate professor at the Bioethics Institute at Johns Hopkins University School of Medicine in Baltimore. "What we’ve learned in cancer susceptibility testing can be applied to Alzheimer’s as well," she notes. "The most important aspect is that genetic counselors develop an expertise in a particular disease. They need additional training, either from attending conferences, through hands-on experience, or from reading, so they can discuss the meaning of the results with the patient."
In addition, the evolution of adult-onset gen-etic testing creates a paradigm shift in the area of informed consent, says Elizabeth Thomson, RN, MS, program director of clinical genetics research at the National Human Genome Research Insti-tute. The Human Genome Institute is a division of the National Institutes of Health in Bethesda, MD. "Informed consent in the past focused primarily on physical harm, but genetic testing could lead to discrimination, stigmatization, and mental harm. These are things never thought about before in terms of informed consent," Thomson adds. As a result, she says, policies to deal with informed consent for genetic testing often are developed after tests are made available. (For information on genetic counselors’ code of ethics, see insert.)
Ongoing education and counseling is crucial for patients, says Geller, who served on a task force on informed consent as part of the Cancer Genetics Studies Consortium funded by the National Institutes of Health. The task force’s recommendations, published in the Journal of the American Medical Association, could be applied to genetic testing for AD as well, she says.1 Those recommendations specify that informed consent for genetic testing should be an ongoing process of education and counseling in which:
• providers elicit participant, family, and community values and disclose their own;
• decision making is shared;
• the style of disclosure is individualized;
• specific content areas are discussed.
An important point to remember about genetic testing and counseling is to focus on the particular disease as well, experts say. A potential hurdle to overcome, for example, in the genetic testing and counseling arena is "genetic myopia," according to Thomson.
"Twenty years ago, I would stress the importance of genetics and how clinicians needed to think more about how they would play a role in health care. Now, I think there’s too much focus on genetics, and in some respects, we need to relearn certain practices," she explains.
The negative aspect of such promising advances in genetic research is the emergence of a genetic underclass, says Thomson. "We’ll see a group of patients who can’t afford to have tests done, or their insurance won’t cover the cost."
Reference
1. Geller G, Botkin J, Green M, et al. Genetic testing for susceptibility to adult-onset cancer: the process and content of informed consent. JAMA 1997; 277:1,467-1,474.
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