Position Statements reflect concrete applications of the Society's Code of Ethics and other official documents. Adoption requires majority vote by the NSGC Board of Directors.
BLOOD SPOT STORAGE AND USE: The National Society of Genetic Counselors supports storage and use of blood spot samples by newborn screening laboratories and transparent policies that govern these activities. Dried blood spots are valuable resources that significantly contribute to lifesaving newborn screening and advancing public health. They are critical for program quality assurance, new test development and institutional review board-approved research. As such, parents should be fully informed of their options through comprehensive education during the prenatal and immediate postnatal period regarding blood spot storage and use policies. (Adopted February 18, 2012)
For additional information, please refer to the background document.
DIRECT TO CONSUMER GENETIC TESTING: The National Society of Genetic Counselors (NSGC) supports access to accurate and appropriate genetic testing. Tests for genetic variations of medical significance should be offered to consumers in conjunction with unbiased education and counseling by a qualified provider, such as a certified genetic counselor. (Adopted 2007; Revised 2011)
DISABILITY: The National Society of Genetic Counselors appreciates diversity and values all individuals. It is the goal of the genetic counseling profession to advocate for all individuals and families according to their unique physical, medical, cultural, educational, and psychosocial needs. The NSGC believes that no person should be discriminated against because he or she has a disability. (Adopted 2011)
FETAL TISSUE RESEARCH: The NSGC supports fetal tissue research (within strict medical guidelines) as a legitimate and important area of scientific investigation and as a vital avenue of research toward treatment of genetic conditions. (Adopted 1992)
GENETIC TESTING AND ADOPTION POSITION STATEMENT: The National Society of Genetic Counselors supports the American Society of Human Genetics and the American College of Medical Genetics joint statement written in the year 2000 entitled “Genetic Testing in Adoption” with the addition of the following comments:
The NSGC supports the routine collection of accurate family, genetic, and medical history information for children entering into the adoption process or foster care system. Medical professionals should utilize this information to determine the likelihood of specific genetic conditions and the appropriateness of genetic testing for the child. Genetic testing should not be undertaken unless family, genetic or medical histories indicate that the results have the potential to be of timely benefit to the child. As previously outlined in the American Society of Human Genetics Social Issues Committee Report on Genetics and Adoption: Points to Consider, 1991
In the unlikely event that genetic testing reveals information that is not of timely medical relevance this specific information should only be released to adoptive parents once the adoption is finalized. Education and counseling throughout the consent and genetic testing process by an appropriate professional is essential. (Adopted 2002)
GENETIC TESTING FOR ADULT-ONSET DISORDERS: Predisposition genetic testing for hereditary susceptibility to disease is a new arena of medicine, but is likely to affect increasing numbers of person and families as more genes are identified. NSGC advocates responsible testing, whether commercial or non-commercial, for which persons receive appropriate pretest education and genetic counseling and posttest follow-up care, as outlined in the position paper. In addition, it is recommended that professionals offering such testing establish relationships with laboratories providing testing to optimize testing procedures and the clinical interpretation of test results. Caution must be used in the provision of predisposition genetic tests to protect persons and families from potential risks to autonomy, privacy, and justice, while maximizing the benefits from genetic knowledge to the individual and to society. (Adopted 1997)
GENETIC TESTING OF MINORS FOR ADULT-ONSET CONDITIONS: The National Society of Genetic Counselors (NSGC) encourages deferring predictive genetic testing of minors for adult-onset conditions whenever possible. The decision to test, when the test is not anticipated to impact medical management in the near term, should be made carefully and on a case-by-case basis. Deferring predictive genetic testing allows individuals to choose for themselves as adults, taking into account their own circumstances, preferences, and beliefs. NSGC strongly recommends that families facing these decisions meet with a certified genetic counselor or medical geneticist to review the clinical and personal implications of testing.
HUMAN GENE PATENTING: The National Society of Genetic Counselors (NSGC) supports an individual's access to medical technology and services. NSGC believes that patent holders granting exclusive licenses on human nucleic acid sequences will hinder the development and cost-effectiveness of genetic testing, particularly when the analysis of multiple genes or the entire genome is necessary to assess the risk or existence of disease.
The NSGC supports government policy that encourages open and unfettered access to human nucleic acid sequences to promote the development of personalized medicine services that will benefit the public.
(Adopted 2010)
For additional information, please refer to the background document.
NATIONAL HEALTH CARE REFORM: Genetic counselors are uniquely trained healthcare providers who deliver genetic risk assessment, provide comprehensive genetic counseling, and ensure the appropriate utilization of genetic tests; yet they are not recognized providers by all payers, including the Centers for Medicare and Medicaid Services (CMS). Policies should promote appropriate patient access to board-certified genetic counselors as part of a high quality, cost-effective healthcare model.
The National Society of Genetic Counselors urges the enactment of federal legislation that would designate board-certified genetic counselors as practitioners by CMS. The Society advocates for all health plans to provide access to these essential services. (Adopted 2011)
NEWBORN SCREENING: The National Society of Genetic Counselors (NSGC) strongly supports newborn screening for the panel of conditions recommended by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. When considering screening, parents should be informed of the significant and potentially fatal childhood health risks that these conditions cause.
NSGC strongly recommends that parents receive newborn screening education and resources from a qualified healthcare provider during the prenatal and the immediate postnatal period. NSGC supports retaining newborn screening results for a minimum of two years, in compliance with Federal regulations. (Adopted 2012)
For additional information, please refer to the background document.
NONDISCRIMINATION: The National Society of Genetic Counselors (NSGC) believes that no individual should be discriminated against on the basis of genetic information obtained from tests or family history. NSGC supports the protections of the Genetic Information Nondiscrimination Act of 2008 (GINA), which safeguards individuals with regard to employment and medical insurance eligibility.
NSGC believes that the protections supported by GINA should encompass all individuals in all circumstances. No person should forego medical care, genetic testing, or participation in clinical trials and/or research studies out of fear that genetic information may be used against him, her or family members. (Adopted 1991; Review 2011)
NONINVASIVE PRENATAL TESTING/NONINVASIVE PRENATAL DIAGNOSIS (NIPT/NIPD): The National Society of Genetic Counselors currently supports Noninvasive Prenatal Testing/Noninvasive Prenatal Diagnosis (NIPT/NIPD) as an option for patients whose pregnancies are considered to be at an increased risk for certain chromosome abnormalities. NSGC urges that NIPT/NIPD only be offered in the context of informed consent, education, and counseling by a qualified provider, such as a certified genetic counselor. Patients whose NIPT/NIPD results are abnormal, or who have other factors suggestive of a chromosome abnormality, should receive genetic counseling and be given the option of standard confirmatory diagnostic testing. (Adopted 2012)
For additional information, please refer to NSGC's NIPT White Paper.
REGULATION OF GENETIC TESTING: Genetic testing is rapidly transitioning from identifying the genetic causes of rare conditions to also providing personalized risk assessments and individual treatments for common diseases. With this expansion, the expertise of Board-certified genetics professionals, such as genetic counselors, may not always be utilized for tests applied to the general population.
The NSGC supports regulation that protects patients from harm by assessing the risk of genetic tests in the context of: 1) the expertise of the health professional providing testing and interpretation; 2) uses or intended applications of test results; and 3) evidence of clinical validity and utility. (Adopted 2010)
REPRODUCTIVE FREEDOM: NSGC supports the right of all individuals and couples to make reproductive choices. These include using information from genetic counseling and/or testing to decide whether to pursue a pregnancy, to utilize assisted reproductive technologies, to prepare for the birth and future needs of their offspring, to make an adoption plan, or to end a pregnancy. NSGC firmly believes that reproductive decisions should be made in the context of unbiased and comprehensive information, free from discrimination or coercion. (Adopted 2010)
SOMATIC CELL NUCLEAR TRANSFER (SCNT) OR "CLONING" FOR THERAPEUTIC AND REPRODUCTIVE PURPOSES: Somatic cell nuclear transfer (SCNT) is defined as the process of removing the nucleus from a somatic donor cell and placing it within an enucleated ovum. Its use is being considered for two distinct purposes: research into potential therapies and reproduction.
NSGC supports the use of somatic cell nuclear transfer (SCNT) to obtain stem cells that can be used to investigate potential treatments for human diseases (i.e. therapeutic or research cloning). SCNT is defined as the process of removing the nucleus from a donor cell and placing it within an enucleated ovum. This cell can then be cultured to produce stem cells as part of the ongoing process of research into stem cell research for potential treatments of human disease.
NSGC does not support the use of SCNT for human reproductive cloning. This position arises from concerns about the safety and efficacy of this technology, as well as potential negative effects this technology may have on the individuals involved, families, and society at large. However, since the potential to use this technology as a means for human reproductive cloning is theoretically possible, animal research into the effects of the process of SCNT is supported by NSGC. Additional research into the individual, societal, religious, legal and ethical implications of utilizing SCNT for reproductive means should be performed as a part of this process.
Reconsideration of our position on SCNT for reproduction may be warranted in the future if:
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a scientific and medical review indicates that the procedures employed are as safe and efficacious as other technology-based methods of reproduction,
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research conducted on the social and ethical implications conclude this to be a reasonable reproductive option, and,
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a broad national and international dialogue on the societal, religious, legal and ethical issues recommends reconsideration of this position. (Adopted 2004)
STEM CELL RESEARCH: The National Society of Genetic Counselors (NSGC) recognizes that the unique potential of stem cell therapy to treat human disease and injury can be realized only through research on a diverse array of stem cell lines drawn from multiple sources, including embryonic, cord blood, and adult cells. NSGC supports the use of stem cells in research and clinical settings when practices adhere to defined ethical and legal guidelines. Available stem cell lines should reflect our genetically diverse population, and donor recruitment should be without discrimination or coercion and include a thorough and dynamic informed consent process. (Adopted 2012)
For more information, please refer to NSGC's Stem Cell Research and Therapy White Paper.