Position Statements

1. Reproductive Freedom (adopted 1987)
2. Access to Care (adopted 1991)
3. Nondiscrimination (adopted 1991; Rev 2002)
4. Confidentiality of Test Results (adopted 1991; Rev 2002)
5. Disclosure and Informed Consent (adopted 1991)
6. Prenatal Substance Abuse(adopted 1992)
7. Fetal Tissue Research (adopted 1992)
8. Cystic Fibrosis (adopted 1993) (retired 2003)
9. Genetic Screening (adopted 1994)
10. National Health Care Reform (adopted 1994)
11. Prenatal and Childhood Testing For Adult-onset Disorders(adopted 1995)
12. Genetic Testing for Adult-onset Disorders(adopted 1997)
13. DNA Sequencing Position Statement PDF (adopted 2002)
14. Genetic Testing and Adoption Position (adopted 2002)
15. Standard Pedigree Symbol Position Statement (adopted 2003)
16. Stem Cell Research (adopted 2003)
17. Somatic Cell Nuclear Transfer (SCNT) or Cloning for Therapeutic and Reproductive Purposes (adopted 2004)
18. Preconception/Prenatal Genetic Screening (adopted 2005)
19. Provision of Quality Genetic Services and Care: Building a Multidisciplinary, Collaborative Approach among Genetic Nurses and Genetic Counselors (adopted 2006)
20. Direct To Consumer Genetic Testing (adopted 2007)

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1. NSGC recommends that individuals who have a family history of cystic fibrosis, a relative who is a carrier of cystic fibrosis, and the partners of such individuals should be offered CF carrier testing
2. NSGC supports the development of population based screening programs which offer carrier testing to pregnant women, women planning a pregnancy and their partners. These programs should provide adequate educational resources for medical personnel and patients, and should address the complexities related to carrier frequencies in different populations, the sensitivity and specificity of test results, and the implications of such results for reproductive decisions. To this end, population based screening programs should have available genetic counseling by an appropriately trained genetics professional (e.g. a genetic counselor or clinical geneticist who is certified by or an active candidate for the ABGC/ABMG). NSGC is committed to working with other professional organizations and consumer groups to develop appropriate materials and facilitate a gradual and responsible integration of genetic testing services into standard prenatal and preconceptional care.
3. NSGC supports the development of a minimum standard CF mutation panel that would maximize CF carrier detection rates for a variety of ethnic groups. In the absence of such a standard, health care providers should incorporate knowledge of the significant differences in laboratory standards (e.g. sensitivity, specificity, accuracy, and the informativeness of CF carrier testing in different populations) into their screening practices. The offer of CF screening should be timed to maximize reproductive options for patients (i.e. preconceptionally or as early as possible in the pregnancy). (Adopted as revised: 12/99) (retired 2003)

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1. Individuals seeking genetic counseling should be offered genetic screening tests after clinical research trials have been satisfactorily completed and the individuals:
1. have a family history of a specific genetic condition for which testing is available, or
2. have reason to suspect a family history of a genetic condition for which testing is available, or
3. are members of a high risk subpopulation;
2. Pilot studies to explore the scientific, educational, counseling, social and ethical aspects of screening should be completed prior instituting large scale screening programs;
3. Clinicians should evaluate test accuracy, informativeness, specificity, sensitivity, and laboratory proficiency prior to sending specimens;
4. Genetic counseling services by a Board Certified/Board Eligible genetic counseling professional should be an integral component of any genetic screening program. (Adopted October 1994)

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1. Genetic Services regardless of race or ethnic background, religion, socioeconomic status, disability, or sexual orientation
2. Prenatal care, family planning services, pediatric and long term care, and psychological counseling Safe and legal abortion
3. Health insurance without respect to health status, including future genetic risks. (Adopted 1994)

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1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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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1. 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
2. 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)

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The National Society of Genetic Counselors advocates the use of pedigree symbols as presented in "Recommendations for Standardized Human Pedigree Nomenclature", (Am J Hum Genet 56: 745-752, 1995), in both clinical practice and in medical/scientific publications.

Standardized pedigree symbols offer a consistent method of recording and interpreting family history, increasing uniformity of medical information and enhancing quality control in clinical genetics, medicine, genetic education and research. (Adopted 2003)

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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.

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vSomatic 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.

1. 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.



2. 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.

1) a scientific and medical review indicates that the procedures employed are as safe and efficacious as other technology-based methods of reproduction,

2) research conducted on the social and ethical implications conclude this to be a reasonable reproductive option, and

3) v a broad national and international dialogue on the societal, religious, legal and ethical issues recommends reconsideration of this position.

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1) Individuals/couples seeking preconception/prenatal care should be offered genetic screening tests after clinical research trials have been satisfactorily completed and the individuals: a) have a family history of a specific genetic condition for which screening is available, b) have reason to suspect a family history of a genetic condition for which screening is available, c) are members of a high risk subpopulation, or d) are members of a low risk population when the clinical and analytical validity and utility of a genetic screening test has been established;

2) Screening is ideally performed prior to conception or as early as possible once pregnancy is confirmed in order to maximize reproductive options;

3) Individuals/couples considering screening should be provided with accurate, balanced information about the condition for which screening is being offered. They should be informed of the specificity, sensitivity, accuracy, risks, benefits and limitations of the screening tests offered and of any follow-up diagnostic tests as well as their reproductive options given a positive diagnostic test result;

4) Pilot studies to explore the scientific, educational, counseling, social and ethical aspects of screening should be completed prior to instituting large scale screening programs;

5) When choosing a laboratory, providers should consider the specificity, sensitivity, accuracy, risks, benefits and limitations of testing;

6) Genetic counseling should be offered to individuals/couples identified to be at increased risk for a specific condition by a screening test and should be available to any individual/couple that desires detailed counseling before screening;

7) Genetic counselors should take an active role in educating primary health care providers about appropriate use of screening tests.

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PROVISION OF QUALITY GENETIC SERVICES AND CARE: BUILDING A MULTIDISCIPLINARY, COLLABORATIVE APPROACH AMONG GENETIC NURSES AND GENETIC COUNSELORS:
The National Society of Genetic Counselors and the International Society of Nurses in Genetics, Inc. recognize that the central focus of each of their practices is to support their members in providing the highest quality, evidence-based genetic services and care to individuals, families and communities. Toward that common aim, both organizations will embrace opportunities to collaborate in research, education, and the provision of multidisciplinary care including collaboration with other healthcare providers, insurers, public health officials, legislators, international colleagues, and the public.

It is the position of ISONG and NSGC that both organizations will, together, promote a multidisciplinary and collaborative approach to enhance the quality of genetic services and care by:

• respecting and valuing the knowledge, perspectives, contributions, and areas of competence of colleagues and collaborating with them to provide the highest quality of services;
• advocating for genetic counseling services to be provided by appropriately trained, qualified, and competent genetics professionals to protect the public;
• collaborating with multidisciplinary research teams to develop effective, high-quality, evidence-based approaches to genetic services including prevention, screening, diagnostics, prognostics, selection of treatment, monitoring of treatment effectiveness, and in providing psychosocial support;
• educating health care professionals, insurers, educators, legislators, public health officials, colleagues, and the public regarding the expanding role of genetics and genomics as integral components in the promotion of the public's health and well-being.

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DIRECT TO CONSUMER GENETIC TESTING

Genetic testing is currently available to consumers without the involvement of the patients’ healthcare providers. A growing number of ‘Direct to Consumer’ (DTC) genetic testing companies offer tests that may diagnose genetic conditions or carrier status, and/or tests that aim to predict a person’s chances of developing certain medical disorders. In addition, DTC genetic analysis is available for various non-medical purposes such as ancestry, marketing of “nutrigenomics” products or paternity testing.

The National Society of Genetic Counselors (NSGC) recognizes that DTC genetic testing may increase access to medical testing services for some individuals. However, individuals seeking genetic information directly from a manufacturer or supplier and without input from a healthcare provider may lack basic and essential knowledge of the purpose and appropriateness of testing, the accuracy and clinical significance of results for themselves and other family members, or the reliability of the laboratory.

There is limited regulatory oversight of DTC genetic testing services at this time. In order to increase the likelihood that patients receive appropriate genetic testing services through a DTC service delivery model, the NSGC strongly recommends that patients undertaking a direct to consumer genetic testing process assess whether the company has addressed the following issues prior to purchasing a DTC genetic test:

1. Are consumer-friendly materials available, developed or reviewed by healthcare professionals with expertise in genetics (e.g. trained genetic counselors) and suitable for individuals seeking and receiving direct-to-consumer testing services?
2. Is information disclosed to potential consumers regarding test purpose, potential limitations, validity and accuracy, using language that is written for consumers?
3. Will results be given in a manner understandable to the average consumer, with a clear explanation of their clinical implications, if any, and including resources providing appropriate follow-up?
4. Are patients encouraged to share their medically relevant genetic test results with their healthcare providers and family members who may also be at risk?
5. Are consumer referrals to healthcare professionals with expertise in genetics available, either on staff or independent of the commercial entity, both before and after testing to assure appropriate medical follow up, including psychological counseling as needed?
6. Is there a process for obtaining and documenting informed consent in a manner consistent with accepted medical practices as well as state and local regulations?
7. What safeguards are in place to protect the consumer/patient privacy?
8. Has the company implemented policies that adhere to testing guidelines and position statements of professional organizations, including the National Society of Genetic Counselors, the American College of Medical Genetics, American Society of Human Genetics and others? These may include relevant guidelines for genetic testing of minors or other potentially vulnerable populations.
9. Are the genetic tests performed by appropriately credentialed laboratories (e.g. CLIA certified)?

NSGC supports consumers’ right to access high-quality genetic services, strongly encourages the involvement of appropriately trained clinical genetics professionals in the genetic testing process, and cautions against using DTC commercial entities that have not addressed the basic issues outlined above.

(Adopted 2007)

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