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With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.

Clinical Care in Genetics

Updated On Sep 19, 2024

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This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.

Introduction

Many organizations have sought to detail what is expected of practitioners when providing clinical care.  For example, should patients have their blood pressure taken once a decade, once a year, or every visit?  Likewise, there are expectations for clinical care in genetics.  For example, who should take family histories, and what should they entail?

The best practices for integrating genetics into clinical care are still being developed.  Scientists are evaluating how different practice groups are providing clinical care in genetics as discussed in this article.  Provider organizations are creating toolkits and resources for their members, such as this primary care toolkit for pediatric providers from the Genetics in Primary Care Institute; or this toolkit for oncology providers from the American Society of Clinical Oncology.

Legislation and Regulation

At this time, we can find no laws or regulations regarding the provision of clinical care in genetics.  However, many organizations issue practice guidelines for providers.  For example, the American College of Medical Genetics (ACMG) publishes practice guidelines for specific topics in genetics.  Likewise, other professional groups such as the National Comprehensive Cancer Network (NCCN) have practice guidelines that relate to genetic care in that specialty field. Physicians, physician assistants, pharmacists, genetic counselors, and nurses have all established genetic/genomic competencies for their professions which can all be found on the National Human Genome Research Institute (NHGRI) Genetic/Genomic Competency Center (G2C2) website.

Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.

Policy Positions

Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on clinical care. Explore these position statements below. 
Position Statements by Organizations
Pharmacogenetic testing of CYP2C9 and VKORC1 alleles for warfarin
Link
https://www.acmg.net/PDFLibrary/CYP2C9-VKORC1-Parmacogenetic-Testing.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Genetic Testing Clinical Care
Date
February 1, 2008
Clinical utility of genetic and genomic services: a position statement of the American College of Medical Genetics and Genomics
Link
https://www.acmg.net/PDFLibrary/Clinical-Utility-Genetic-Genomic-Services.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Clinical Care
Date
March 12, 2015
Scope of practice: a statement of the American College of Medical Genetics and Genomics (ACMG)
Link
https://www.acmg.net/PDFLibrary/Scope-Of-Practice.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Clinical Care
Date
July 23, 2015
Use of Multi-Gene Panel Tests
Link
https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/use-of-multi-gene-panel-tests#:~:text=The%20National%20Society%20of%20Genetic,the%20genetic%20causes%20of%20disease.
Organization
National Society of Genetic Counselors (NSGC)
Subject
Genetic Testing Clinical Care
Date
June 15, 2023
Patient re-contact after revision of genomic test results: points to consider—a statement of the American College of Medical Genetics and Genomics (ACMG)
Link
https://www.acmg.net/PDFLibrary/Patient-recontact.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Clinical Care Genetic Testing
Date
December 22, 2018
Professional responsibilities regarding the provision, publication, and dissemination of patient phenotypes in the context of clinical genetic and genomic testing: points to consider—a statement of the American College of Medical Genetics and Genomics (ACMG)
Link
https://www.acmg.net/PDFLibrary/Patient-Phenotypes-Professional-Responsibilities.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Clinical Care Genetic Research
Date
January 11, 2018
Points to consider for reporting of germline variation in patients undergoing tumor testing: a statement of the American College of Medical Genetics and Genomics (ACMG)
Link
https://www.acmg.net/PDFLibrary/Points%20to%20consider%20for%20reporting%20of%20germline%20variation%20in%20patients%20undergoing%20tumor%20testing.pdf
Organization
American College of Medical Genetics and Genomics (ACMG)
Subject
Clinical Care Genetic Testing
Date
April 23, 2020
Pulmonary Fibrosis Foundation Position Statement on Genetic Testing
Link
https://www.pulmonaryfibrosis.org/researchers-healthcare-providers/clinical-resources/position-statements/genetic-testing-in-pulmonary-fibrosis-for-health-care-providers
Organization
Pulmonary Fibrosis Foundation
Subject
Genetic Testing Clinical Care
Date
April 1, 2020
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