Ethical Issues About Genetic Testing

Name: Jeidre L.
Pamorca
Grade and Section: 8-Einstein
Ethical issues regarding Genetic Testing

Informed Concent
Genetic Exceptionalism
Before the appropriate process for obtaining consent for genetic tests is considered, it is necessary to confront the broader question of whether the consequences
of the results of those tests are substantively different from the consequences of other "medical" tests, for which specific consent is not always obtained. Some
ethicists argue against what has been called the "exceptionalism" of genetic tests . They maintain that many medical tests have consequences for patients that
are similar to those of genetic tests. For example, there can be discrimination by insurance companies against individuals either with a genetic disease or with a
disease that is not linked to any particular gene. Results of nongenetic tests, as well as genetic tests, can divulge information about family members (eg, tests for
sexually transmitted diseases). Additionally, both genetic and nongenetic tests can provide information about a person's medical future. As such, some authors
have concluded that many genetic test results "may cause stigmatization, family discord and psychological distress. Regardless of whether a test is genetic,
when this combination of characteristics is present…testing should be performed with particular caution and the highest standards of informed consent and
privacy protection should be applied".
Role of the Obstetrician–Gynecologist
In addition to needing to ensure proper consent, the obstetrician–gynecologist who orders genetic tests should be aware of when it is appropriate to test, which
particular test to order, and "what information the test can provide, the limitations of the test, how to interpret positive and negative results in light of the
patient's medical or family history, and the medical management options available" . The health care provider ordering tests has a responsibility to use and
interpret those tests correctly or to refer to someone with relevant expertise. Because completing all these tasks is particularly difficult when direct-to-consumer
marketing of genetic tests is used, that marketing approach has significant limitations . These enterprises receive compensation only if an individual, after
counseling, chooses to undergo a test, bringing the standard of neutral counseling into question and further rendering the use of a market-driven approach to
testing ethically problematic . In the end, the physician plays an important role in providing adequate, neutral counseling; ensuring informed consent; and
providing follow-up for genetic tests. Neutral counseling also may be compromised through the use of patient educational materials or counselors that are
provided by a company that might profit from a patient's decision to undergo testing.
Genetic Testing in Children and Adolescents
Testing of children presents unique issues in counseling and consent. Although it is most commonly pediatricians or geneticists who are called on to test
children for genetic diseases, obstetricians may be asked to test already born children of parents who, through the process of prenatal testing, have been found
to be carriers of genetic diseases. In such cases, the physician should balance the rights of the parents to have information that can optimize the ongoing health
care of their children against the rights of the children to have their best interests protected. There will be circumstances in which it can be determined that a
child is at risk for an untoward clinical event in the future, but there may be no information about interventions that have the potential to reduce the likelihood
of that event or the magnitude of its effect. In that circumstance, the benefits of testing a child are not always clear.
Prenatal Genetic Testing

Genetic testing of the fetus offers both opportunities and ethical challenges. Preconception and prenatal genetic screening and testing are recommended for a
limited number of severe child-onset diseases because such screening and testing provides individuals with the chance to pursue assisted reproductive
technology in order to avoid conception of an affected child, to consider termination of a pregnancy, or to prepare for the birth of a chronically ill child. With
advancing genetic technology, however, physicians may increasingly face requests for testing of fetuses for less severe child-onset conditions, adult-onset
conditions, or genetically linked traits.
Genetic Data and the Family

In a large number of instances, when patients receive the results of genetic tests, they are party to information that directly concerns their biologic relatives as
well. This familial quality of genetic information raises ethical quandaries for physicians, particularly related to their duty of confidentiality. In these
circumstances, some have posited an ethical tension between obligations the clinician has to protect the confidentiality of the individual who has consented to a
test on the one hand and a physician's duty to protect the health of a different individual on the other hand. For example, a woman who discovers that she is a
carrier of an X-linked recessive disease during the workup of an affected son might choose not to tell her pregnant sister about her carrier status because she
does not believe in abortion and fears that her sister might consider an abortion (16). In another example, a woman identified as a carrier of a gene predisposing
individuals to cancer might not wish to share the information with relatives, some of whom might even be patients of the same physician who tested her,
because such sharing would disclose her own status as a carrier.
Genetic Data and Insurers and Employers

Concerns about access to health and life insurance in the face of the discovery of a deleterious or predisposing gene is one of the most nettlesome issues facing
health care providers who wish to use genetic testing to improve the health of their patients. In some ways, the importance of this issue is more pronounced in
the United States because of the manner in which health care coverage is obtained. In countries with universal health care, individuals with the diagnosis of a
predisposing gene need not fear the loss of access to health insurance.
Genetics and Assisted Reproductive Technology

In the first instance, there is the need to consider whether all individuals, regardless of genotype, should have access to ART using their own gametes. In the
past, individuals who were infected with deleterious viruses that have the potential to be passed to their children (eg, human immunodeficiency virus) were
denied access to ART, in part because, before the advent of a variety of interventions, as many as one in four of their offspring would acquire an ultimately fatal
infection, a risk similar to that if both parents are carriers for a serious autosomal recessive disease. Others have argued, however, that "procreative liberty
should enjoy presumptive primacy when conflicts about its exercise arise because it is central to personal identity, to dignity and to the meaning of one's life" .
Such principles would support allowing prospective parents to be arbiters of the level of risk to which a child could be exposed.

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Ethical Issues About Genetic Testing

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Name: Jeidre L.

Ethical issues regarding Genetic Testing

Prenatal Genetic Testing

Genetic Data and the Family

Genetic Data and Insurers and Employers

Genetics and Assisted Reproductive Technology

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