Should people be allowed to choose or refuse the test, or should it be mandatory, as newborn screening is in some states? Should people be able to control access to the results of their tests? If test results are released to third parties such as employers or insurers, what protections should be in place to ensure that people are not treated unfairly because of their genotype?
Committee on Ethics Committee on Genetics 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.
Genetic testing is poised to play an increasing role in the practice of obstetrics and gynecology.
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 obstetrician—gynecologists.
Expert consultation and referral are likely to be needed when obstetrician—gynecologists 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 project—a year multibillion-dollar program—was initiated in to identify all the estimated 20,—25, genes and to make them accessible for further study. 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.
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 obstetrician—gynecologists 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.
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.
Obstetrician—gynecologists 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. 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: Informed Consent 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 5.The usual standards for review of research should be applied no matter what the setting. In particular, an institutional review board (IRB) should review the scientific and ethical issues related to new tests and services in academic research centers, state public health departments, and commercial enterprises.
Digital Collections—selected monographs about ethics of genetics research and clinical practice, and current concerns whether genetic intervention creates a new eugenics. The Human Genome Project provides historical background on the ethical, legal and social aspects of the ongoing mapping of the human genome.
Its bibliography cites. Ethical, Legal and Social Issues in Genomic Medicine Genomics is the study of an organism's whole hereditary information that is present in its genes (DNA) and the use of its genes. It deals with the use of genome information associated with other information to provide answers in biology and medicine.
There is more than enough ethical mud in genetics of to keep physicians, lawyers, scientists and bioethicists on guard. A majority are unaware of the progress made in routine and exotic genetics, and most are caught off guard by each new technology.
Americans spend millions on genetic research concerning intelligence, but find their. On March 16, Rep. Louise M. Slaughter (D-N.Y.), author of the Genetic Information Nondiscrimination Act of (GINA), passed away at the age of Rep.
Slaughter was a strong advocate for genomics research, and her work on GINA helped create protections against genetic discrimination in employment and health insurance.
Aug 28, · The Ethical, Legal, and Social Implications (ELSI) program was founded in as an integral part of the Human Genome Project. The mission of the ELSI program was to identify and address issues raised by genomic research that would affect individuals, families, and society.