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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)
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.
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. (Adopted February 18, 2012)
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 July 25, 2011)
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; Rev 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 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 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 February 18, 2012)
PRENATAL AND CHILDHOOD TESTING FOR ADULT-ONSET DISORDERS: Adult-onset genetic disorders are defined as disorders which are usually phenotypically asymptomatic until the third decade of life or later. For those disorders for which the identification of gene carriers does not provide an avenue for therapeutic or preventive treatment in the prenatal or childhood periods, genetic testing must be carefully considered. In response to the unique nature of these disorders, the NSGC supports the following recommendations:
Clients considering a pregnancy or who have a fetus or child at-risk for an adult-onset genetic disorder should be made aware of clinically available testing technologies for that disorder.
Testing during pregnancy or childhood allows the parent, rather than the individual (fetus or child) being tested, to provide informed consent to proceed. Given that many at-risk adults may elect not to be tested, testing in pregnancy or during childhood should be undertaken cautiously. Parents should consider whether the decision to test should be reserved for the child to make upon reaching adulthood.
Prenatal and childhood testing for adult-onset genetic conditions should always include genetic education and counseling. Genetic counseling for clients considering such testing should include exploration of the psychological/social risks and benefits of early genetic identification from both the parents' and child's perspectives. When possible the child should be involved in the decision about whether or not to be tested. Other issues discussed should include the possibility of discrimination in insurance, education and employment for the child or family in both the immediate and more distant future.
Prenatal testing for adult-onset genetic conditions should be offered regardless of whether or not an affected fetus would be terminated. Prior to prenatal testing, genetic counselors should discuss the possible results as well as advantages and disadvantages of learning this information. It may also be helpful to ascertain and discuss the parent's motivations for testing. It is the role of the genetic counselor to educate and counsel clients about testing, but the decision about whether to proceed must be the parents' to make.
Individuals who have declined predictive testing for themselves can consider testing for their child or fetus, or utilizing non-disclosing prenatal testing. However, prior to performing such testing, they must be made cognizant to the fact that (with the exception of non-disclosing prenatal testing) a positive result may also disclose their status. Discussion of the possible ramifications of this information should be included in the genetic counseling provided prior to testing. If prenatal or childhood testing could result in the disclosure of the carrier status of family members who are not part of the testing decision process, attempts should be made to contact, counsel and obtain their permission for testing. If a conflict should arise between parents and other at-risk family members, consultation with an ethics committee or similar body is strongly recommended.
Caution should be exercised in the communication and documentation of test results. The child's parents should be made aware of the sensitive nature of the test results and the implications of sharing them with other professionals for whom the information is non-essential.
Genetic counselors are encouraged to consider both patient autonomy issues as well as the principle of nonmaleficence when requests are made for this type of testing. As with any type of genetic testing and counseling situation, genetic counselors should not be expected to offer a service that they feel uncomfortable providing and should be allowed to remove themselves from such a case, or refer the case to another genetics professional.
Pilot studies are needed to assess the medical and psychosocial risks and benefits of testing for adult-onset genetic conditions in children or fetuses carried to term when no direct medical benefit is known. Until more data is gathered on the impact of this type of testing, extreme caution should be taken regarding the use of such tests. (Adopted 1995)
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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 supports the use of human stem cells, in accordance with strict medical, legal and ethical guidelines, as a legitimate and important area of scientific investigation and as a vital avenue of research toward the treatment and understanding of genetic conditions.
The NSGC supports and endorses:
- The development of, and government funding for, stem cell lines from the donation of cord blood or fertilized ovum that would otherwise be discarded, and the development of alternative sources of stem cells.
- The collection of stem cells through voluntary donation only, without monetary incentives, after thorough informed consent. If donation is not anonymous, new informed consent should be obtained if the use of the stem cells changes materially from the use disclosed on the consent form, if any.
- The responsibility of stem cell banks to maintain a broad array of cell lines of sufficient diversity to meet the needs of our genetically diverse population and ensure equal access to potential transplant therapies.
- The development and continual analysis of the medical, ethical, and legal guidelines and restrictions needed to protect and ensure proper use and application of the technology, fair dispersal of its potential benefits, and adequate privacy and safety measures for this research and its resultant therapies.
- Efforts to increase public awareness and education regarding the potential benefits of responsible stem cell research.
- The American Society of Human Genetics Position Statement on Stem Cell Research. (Adopted 2003)