StemCell Therapy

This document reflects emerging clinical and scientific advances as of the date issued and is subject to change. The information should not be construed as dictating an exclusive course of treatment or procedure to be followed.

ABSTRACT: Genetic testing is poised to play an increasing role in the practice of obstetrics and gynecology. To assure patients of the highest quality of care, physicians should become familiar with the currently available array of genetic tests and the tests' limitations. Clinicians should be able to identify patients within their practices who are candidates for genetic testing. Candidates will include patients who are pregnant or considering pregnancy and are at risk for giving birth to affected children as well as gynecology patients who, for example, may have or be predisposed to certain types of cancer. The purpose of this Committee Opinion is to review some of the ethical issues related to genetic testing and provide guidelines for the appropriate use of genetic tests by obstetriciangynecologists. Expert consultation and referral are likely to be needed when obstetriciangynecologists are confronted with these issues.

Although ethical questions related to genetic testing have been recognized for some time, they have gained a greater urgency because of the rapid advances in the field as a result of the success of the Human Genome Project. That projecta 13-year multibillion-dollar programwas initiated in 1990 to identify all the estimated 20,00025,000 genes and to make them accessible for further study. The project harnessed America's scientists in a quest for rapid completion of a high-priority mission but left a series of ethical challenges in its wake. When developing the authorizing legislation for the federally funded Human Genome Project, Congress recognized that ethical conundrums would result from the project's technical successes and included the need for the development of federally funded programs to address ethical, legal, and social issues. Accordingly, the U.S. Department of Energy and the National Institutes of Health earmarked portions of their budgets to examine the ethical, legal, and social issues surrounding the availability of genetic information.

The purpose of this Committee Opinion is to review some of the ethical issues related to genetic testing and provide guidelines for the appropriate use of genetic tests by obstetriciangynecologists. It is important to note at the outset, given the increasing complexity of this field and the quickness with which it advances, that expert consultation and referral are likely to be needed when obstetriciangynecologists are confronted with many of the issues detailed in this Committee Opinion.

The pace at which new information about genetic diseases is being developed and disseminated is astounding. Thus, the ethical obligations of clinicians start with the need to maintain competence in the face of this evolving science. Clinicians should be able to identify patients within their practices who are candidates for genetic testing. Candidates will include patients who are pregnant or considering pregnancy and are at risk for giving birth to affected children as well as gynecology patients who, for example, may have or be predisposed to certain types of cancer.

If a patient is being evaluated because of a diagnosis of cancer in a biologic relative and is found to have genetic susceptibility to cancer, she should be offered counseling and follow-up, with referral as appropriate, to ensure delivery of care consistent with current standards. In fact, genetic screening for any clinical purpose should be tied to the availability of intervention, including prenatal diagnosis, counseling, reproductive decision making, lifestyle changes, and enhanced phenotype screening.

One of the pillars of professionalism is social justice, which would oblige physicians to "promote justice in the health care system, including the fair distribution of health care resources" (1). In the context of genetic testing, justice would require clinicians to press for resources, independent of an individual's ability to pay, when they encounter barriers to health care for their patients who require care as a consequence of genetic testing and diagnosis (1).

Obstetriciangynecologists also are ideally positioned to educate women. When they, or experts in genetics to whom they refer, counsel on genetics, they should provide accurate information and, if needed, emotional support for patients burdened by the results or consequences of genetic diagnoses, be they related to preconception or prenatal care, cancer risks, or other implications for health. Finally, clinicians should familiarize their patients with steps that can be taken to mitigate health risks associated with their genetic circumstance (eg, having a colonoscopy if there is a predisposition to colon cancer) (2).

It recently has been suggested that each person's entire genome may be available for use by physicians for diagnostic and therapeutic purposes in the not-too-distant future (3). Although that might seem like a medical panacea, the potential risks associated with wide-scale genetic testing are substantial. Many incidental findings will come to light, and yet, although those tested may be tempted to believe otherwise, genetic findings do not equate directly with either disease or health: "one hundred percent accurate identification of such incidental pathologies will lead to iatrogenic pathology the belief that genetics completely determines phenotypic outcome must be informed by an understanding that most genetic measurements only shift the probability of an outcome, which often depends on other environmental triggers and chance" (4).

Genetic Exceptionalism

See the article here:
Ethical Issues in Genetic Testing - ACOG

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