Ethical and legal issues arising from complex genetic disorders. DOE final report Page: 1 of 5
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DOE Final Report
October 9, 2002
*To be entered into DOE's electronic database directly
Password: 695046, User ID: ANDREWS
Summary of findings:
Our project analyzed -the challenges raised by complex genetic disorders in
genetic counseling, for clinical practice, for public health, for quality assurance and for
protection against discrimination. Our research found that, in some settings, solutions
created in the context of single gene disorders are more difficult to apply to complex
disorders. In other settings, the single gene solutions actually backfired and created
additional problems when applied to complex genetic disorders. We also evaluated in-
depth the literature of five common, complex genetic disorders: Alzheimer's, asthma,
coronary heart disease, diabetes and psychiatric illnesses.
We started our project by collecting medical, legal, epidemiological,
psychological, and ethical articles dealing with complex genetic disorders. A second
stage of the project focused on the extent to which the medical, legal, ethical, and
psychological articles acknowledged the range of ethical issues raised by complex
genetic disorders and the aspects of those issues that are unique. In that analysis, we
collected all articles related to genetic testing for five complex genetic disorders
(Alzheimer's, asthma, coronary heart disease, diabetes and psychiatric illnesses) and
analyzed the extent to which the articles acknowledged, compared, or analyzed the
existence of ethical, legal, or social challenges present when testing for complex genetic
We then analyzed the way in which courts in cases involving negligence law and
discrimination law have addressed genetic testing and genetic disease. This aspect of the
study attempted to predict whether complex genetic diseases would be handled
differently than single gene disorders.
Background Concerns with Complex Disorders
Obtaining informed consent in the realm of complex genetic diseases is
complicated by the potential for multiple diagnoses. Patients seeking testing for one
specific complex disease may find in the process that they are at increased risk for
another complex disease for which they were not inquiring. The presence of a variant of
the apolipoprotein E (ApoE) allele, for example, is a marker for coronary heart disease
but the ApoE-4 variant is also a marker for Alzheimer's disease. Is the clinician ethically
obliged to inform the patient of the presence of the predisposing gene for Alzheimer's
disease when the patient did not consent to the test or knowledge of the information? This
is a concern because the patient did not provide informed consent to test for several
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Office of intellectual Property Law
DOE Chicago Operations office
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Andrews, Lori. Ethical and legal issues arising from complex genetic disorders. DOE final report, report, October 9, 2002; United States. (https://digital.library.unt.edu/ark:/67531/metadc739265/m1/1/: accessed April 19, 2019), University of North Texas Libraries, Digital Library, https://digital.library.unt.edu; crediting UNT Libraries Government Documents Department.