Ethical and legal issues arising from complex genetic disorders. DOE final report Page: 4 of 5
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The discovery of one's genotype through genetic testing has profound
implications for individual self-esteem and self-perception. Much research has been
conducted within the single gene diseases assessing the individual's psychosocial risks
based on the results of genetic tests. These risks are simply magnified in the arena of
multifactorial disease. Knowing the presence of onc "defective" gene can lead a person
into severe depression, but the knowledge of several "defective" genes without a clear
sense of their meaning and implication for future disease has the potential for devastating
results. Genetic knowledge, despite its nuances and inaccuracies, can alter people's ideas
of self-efficacy, esteem, personal locus of control and even risk-taking behaviors. But
information about complex genetic disorders may have a lesser impact on individuals
because the predictive value of a test is so much lower than the predictive value of the
test for a single gene disorder.
Information about complex genetic disorders may have little impact on actual
decisions. For example, despite the hypothesis that smokers who knew they had a higher
risk for cancer based on genetic test results would be more inclined to quite smoking, the
early data from smoking research shows no greater likelihood among smokers who were
informed of their genetic cancer risk to quit smoking. Research reveals that the genetic
information provides no great motivation, but also does not undermine a person's desire
to quit. Given the interplay between genetic factors, environmental influences and risk-
taking behaviors in the development of complex disease, the belief among many public
health experts that the knowledge of one's genetic information will lead to a more
informed lifestyle and will be an important catalyst for preventive medicine may be
In analyzing the writings on complex, genetic disorders we found that none
addressed the full range of potential ethical issues involved and only a few pointed out
the unique issues that genetic complexity raised.
In our legal analysis, we found that under the American with Disabilities Act (ADA),
people who have a record of, are regarded as having, or do have a disability are protected
from discrimination in employment and in the provision of health care services. More
controversial are conditions that might make the person less likely to want to reproduce,
bringing that person within the protection of the ADA since reproduction has been
interpreted by courts to be a major life function. AIDS is such a condition, but so, too,
might be some untreatable dominant single gene disorders, such as Huntington's disease.
Courts' focus in interpreting the ADA has been on the severity of the disorder. Thus the
ADA has application for complex multifactorial diseases where the manifestation is
severe, such as coronary artery disease.
As people begin to undergo genetic testing for complex, common disorders, however,
questions have been raised as to just what constitutes a disability under the ADA. For
example, whether an alleged genetic predisposition to develop carpal tunnel syndrome
should be considered a disability under the ADA is an issue currently being litigated.
In the context of negligence, when people seek genetic testing, genetic counseling or
other genetic information, health care providers have an obligation to provide it in a high
quality way. When patients might benefit from genetic services, physicians have a legal
obligation to offer them. Medical malpractice cases have held health care providers liable
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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/m1/4/: accessed April 18, 2019), University of North Texas Libraries, Digital Library, https://digital.library.unt.edu; crediting UNT Libraries Government Documents Department.