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Position Statements

Consumer-Initiated Genetic Testing Position Statement

11.5.2025

The National Society of Genetic Counselors (NSGC) advises consumers to consider the risks, limitations, and psychological implications of genetic testing for themselves and their families before purchasing an at-home genetic test (i.e. direct-to consumer, consumer-directed, consumer initiated, etc)

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Genetic Testing of Minors for Adult-Onset Conditions

10.16.2025

The National Society of Genetic Counselors (NSGC) encourages deferring predictive genetic testing of minors for adult-onset conditions when results will not impact childhood medical management or significantly benefit the child.

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Human Gene Patenting

9.18.2025

The National Society of Genetic Counselors (NSGC) supports the U.S. Supreme Court's unanimous ruling in Association for Molecular Pathology v Myriad Genetics, Inc. which states that while synthetic complementary DNA is patent eligible, naturally occurring human DNA sequences may not be patented. 

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Raw Data

9.1.2025

The National Society of Genetic Counselors (NSGC) recommends that laboratories, healthcare providers, patients, and individuals seeking genetic testing consider and be informed of the risks, benefits, and limitations of obtaining, releasing, and/or sharing raw genetic and genomic data.

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Confronting Racism, Oppression, & Inequity in Genetic & Genomic Medicine

2.1.2025

The NSGC is committed to confronting the unjust use of genetic information which leads to the oppression of people of color and other marginalized communities. These actions have contributed to a dire public health crisis, systemic racism, and health inequity. NSGC believes that the genetics community has a responsibility to acknowledge and address past and current injustices by building trust with systemically marginalized communities, taking steps to mitigate health disparities, and pursuing equity in access to genetic and genomic medicine for the patients and communities we serve.
 
NSGC condemns racist and oppressive policies, practices, and statements. NSGC urges all healthcare providers, researchers, educators, institutions, payers, and companies to equitably deliver genomic medicine to all individuals with cultural humility, regardless of (but not limited to) genetic status, age, sex, gender identity or expression, race, ethnicity, country of origin, culture, religion, spiritual beliefs, language, sexual orientation, socioeconomic status, legal status, citizenship, health history, and disability. Furthermore, NSGC believes the burden of responsibility to address and prevent inequitable use of genetic information cannot and should not lie with those populations who have been a target of its discriminatory use.
 
NSGC supports measures to remove systemic barriers in medicine. These include (but are not limited to) anti-racist legislation that increases equitable access to healthcare, research that is inclusive of and directly beneficial to historically marginalized communities, education that promotes ethical and accurate use of genetic information, and genetic and genomic services that are delivered equitably to all.
 
To learn more about NSGC’s efforts in confronting racism, oppression, and inequity in Genetic and Genomic Medicine, and to access additional resources around justice, equity, diversity, and inclusion-related topics, please visit: https://www.nsgc.org/JEDI
 
NSGC commits to reviewing this position statement annually and publishing an annual progress report on these efforts on the NSGC website. 

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Access to Reproductive Healthcare

2.1.2025

NSGC supports the ability of genetic counselors to communicate accurate, unbiased information about the complete range of reproductive options.

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Regulation of Genetic Testing

2.1.2025

The National Society of Genetic Counselors supports regulation of genetic testing for health-related conditions and hereditary diseases for clinical use.

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Newborn Screening

2.1.2025

The National Society of Genetic Counselors (NSGC) strongly supports newborn screening for the Recommended Uniform Screening Panel (RUSP) as approved by the Secretary of the Department of Health and Human Services, as well as state-mandated newborn screening systems for the universal protection of newborns. 

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Advocating for Access to Genetic Counselors

2.1.2025

The National Society of Genetic Counselors (NSGC) advocates for policies that promote appropriate patient access to board-certified genetic counselors as part of a high quality, cost-effective healthcare model.

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Clinical Data Sharing

2.1.2025

The National Society of Genetic Counselors (NSGC) encourages the sharing of de-identified clinical and genetic information acquired by clinicians and laboratories from individuals undergoing clinical genetic or genomic testing. 

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