Name,Link,Organization,Subject,Date,"Other Organization","Other Subjects","Submitter Name","Submitter Email" "Position Statement on addition of new disorders to the SACHDNC recommended uniform panel and to individual state newborn screening programs",https://savebabies.org/about/,"Save Babies Through Screening Foundation","Newborn Screening","October 25, 2023",,,, "Newborn Screening",https://www.astho.org/globalassets/pdf/policy-statements/newborn-screening.pdf,"Association of State and Territorial Health Officials (ASTHO)","Newborn Screening",,,,, "Statement of the American College of Medical Genetics on Universal Newborn Hearing Screening",https://www.acmg.net/PDFLibrary/Universal-Newborn-Hearing-Screening.pdf,"American College of Medical Genetics and Genomics (ACMG)","Newborn Screening,Hearing Screening","January 1, 2000",,,, "Statement On Newborn Screening And Treatment Of Individuals With Inborn Errors Of Metabolism Detected By Newborn Screening",https://www.simd.org/Statements/SIMDNewbornScreening2004.htm,"Society for Inherited Metabolic Disorders (SIMD)","Newborn Screening","June 7, 2004",,,, "Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening",https://geneticalliance.org/pdf/policy/070110PolicyStatement1.pdf,"Genetic Alliance","Newborn Screening","July 1, 2010",,,, "Newborn Screening and Storage and Use of Residual Newborn Screening Blood Spots",https://www.simd.org/Statements/NewbornScreeningBloodspotStorage2011.htm,"Society for Inherited Metabolic Disorders (SIMD)","Newborn Screening","March 3, 2011",,,, "Privacy and Confidentiality of Genetic Information: the Role of the Nurse",https://www.isong.org/resources/Documents/ISONG%20Position%20Statement_Privacy%20and%20Confidentiality%20of%20Genetic%20Information%20approved%20May%201%202018.pdf,"International Society of Nurses in Genetics (ISONG)","Genetic Privacy","April 5, 2010",,,, "Emergency preparedness for newborn screening and genetic services",https://www.acmg.net/PDFLibrary/Emergency-Preparedness-NBS.pdf,"American College of Medical Genetics and Genomics (ACMG)","Newborn Screening,Emergency Preparedness","May 13, 2009",,,, "Position Statement on Importance of Residual Newborn Screening Dried Blood Spots",https://www.acmg.net/PDFLibrary/NBS-Blood-Spot-Retention.pdf,"American College of Medical Genetics and Genomics (ACMG)","Newborn Screening","April 29, 2009",,,, "Comments on the Implementation of GINA",https://www.ashg.org/wp-content/uploads/2008/11/Comments-20081812-response-to-request-in-GINA.pdf,"American Society of Human Genetics (ASHG)","Discrimination,Genetic Testing,Genetic Privacy","December 18, 2008",,,, Nondiscrimination,https://www.nsgc.org/p/bl/et/blogaid=32,"National Society of Genetic Counselors (NSGC)","Discrimination,Genetic Privacy","June 1, 2011",,,, "Updated Strategies for Pulse Oximetry Screening for Critical Congenital Heart Disease",https://publications.aap.org/pediatrics/article/146/1/e20191650/77026/Updated-Strategies-for-Pulse-Oximetry-Screening,"American Academy of Pediatrics (AAP)","Newborn Screening","January 1, 2012",,,, "Newborn Screening: The Role of the Nurse",https://www.isong.org/resources/Documents/Newborn%20ScreeningThe%20Role%20of%20the%20Nurse%20Updated%20Nov%202020.pdf,"International Society of Nurses in Genetics (ISONG)","Newborn Screening","September 1, 2012",,,, "Newborn Screening Four Facts Policymakers Need to Know",https://www.aphl.org/aboutAPHL/publications/Documents/NBS_2012Dec20_Newborn-Screening-Four-Facts-Policymakers-Need-to-Know.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","December 20, 2012",,,, "Joint Letter to Congress in Support of Genetic Information Non-discrimination Act (GINA)",https://medialib.aafp.org/dam/AAFP/documents/advocacy/prevention/strategy/LT-Con-GINA-042115.pdf,"American Academy of Family Physicians (AAFP)","Genetic Privacy,Legal,Discrimination","April 21, 2015",,,, "Sign-on letter to the Response to the NIH Draft Genomic Data Sharing (GDS) Policy",https://geneticalliance.org/pdf/policy/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf,"Genetic Alliance","Genetic Privacy,Genetic Research","November 20, 2013",,,, "Response to the NIH draft Genomic Data Sharing (GDS) policy",https://geneticalliance.org/pdf/policy/Sign-on-to-NIH-Response-Genomic-Data-Sharing.pdf,"Genetic Alliance","Genetic Privacy,Genetic Research","November 20, 2013",,,, "Identifying abnormal newborn screens requiring immediate notification of the health care provider [editorial: time-critical newborn screening conditions]",https://www.simd.org/Issues/SIMD%20NBS%20Critical%20Conditions%20policy%20statement.pdf,"Society for Inherited Metabolic Disorders (SIMD)","Newborn Screening","August 21, 2014",,,, "Clinical Data Sharing",https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/clinical-data-sharing,"National Society of Genetic Counselors (NSGC)","Genetic Research,Genetic Privacy","November 25, 2020",,,, "Supporting Research Participant Privacy",https://www.ashg.org/publications-news/press-releases/201612-century-cures-act/,"American Society of Human Genetics (ASHG)","Genetic Privacy,Genetic Research,Legal","June 30, 2015",,,, "APHL Policy Statement on Quality Assurance in the Newborn Screening (NBS) Laboratory",https://www.aphl.org/policy/Position_Documents/NBS_2015_QA_QC_in_NBS_Laboratory.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","December 1, 2015",,,, "Newborn Screening",https://www.jognn.org/article/S0884-2175(22)00285-4/fulltext,"Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN)","Newborn Screening","December 1, 2022",,,, "Comments on Proposed Rule, Amendments to regulations under the Genetic Information Nondiscrimination Act of 2008, RIN 3046-AB02",https://geneticalliance.org/pdf/policy/01282016-Genetic_Alliance_GINA_NPRM_Comments.pdf,"Genetic Alliance","Genetic Privacy,Workplace,Legal","January 28, 2016",,,, "APHL Position Statement Newborn Screening Follow-up",https://www.aphl.org/policy/Position_Documents/NBS_2011_Newborn_Screening_Follow-up_Extension.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","March 1, 2017",,,, "APHL Position Statement Newborn Screening Residual Dried Blood Spot Specimens",https://www.aphl.org/policy/Position_Documents/DBS%20Final.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","August 1, 2017",,,, "Newborn Screening",https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/newborn-screening,"National Society of Genetic Counselors (NSGC)","Newborn Screening","February 25, 2022",,,, "Blood Spot Storage and Use",https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/blood-spot-storage-and-use,"National Society of Genetic Counselors (NSGC)","Newborn Screening,Genetic Privacy","November 15, 2022",,,, "Delay in State Adoption of Newborn Screening Tests",https://everylifefoundation.org/wp-content/uploads/2019/03/Pediatrics-NBS-Article.pdf,"EveryLife Foundation for Rare Diseases","Newborn Screening","December 1, 2017",,,, "APHL Position Statement Newborn Screening Contingency Planning",https://www.aphl.org/policy/Position_Documents/Contingency%20Planning%20Final.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening,Emergency Preparedness","December 1, 2017",,,, "Workplace Wellness Programs",https://www.nsgc.org/POLICY/Position-Statements/Position-Statements/Post/workplace-wellness-programs,"National Society of Genetic Counselors (NSGC)","Discrimination,Genetic Privacy","September 13, 2017",,,, "APHL Position Statement Newborn Screening Short Term Follow-Up",https://www.aphl.org/policy/Position_Documents/STFU%20Final.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","July 1, 2017",,,, "APHL Position Statement Parental Consent for Newborn Screening",https://www.aphl.org/policy/Position_Documents/Parental%20Consent%20Final.pdf,"Association of Public Health Laboratories (APHL)","Newborn Screening","July 1, 2017",,,, "Protecting Genetic Privacy in Law Enforcement",https://www.ashg.org/wp-content/uploads/2017/03/Statement-20170203-Collection-and-use-of-genetic-information-Law-Enforcement.pdf,"American Society of Human Genetics (ASHG)","Genetic Privacy,Legal","March 2, 2017",,,, "Prohibiting Genetic Discrimination",https://www.ashg.org/advocacy/statement-archive/2019-genetic-discrimination/,"American Society of Human Genetics (ASHG)","Discrimination,Genetic Privacy","January 2, 2019",,,, "At-Home Genetic Testing Position Statement",https://www.nsgc.org/Policy-Research-and-Publications/Position-Statements/Position-Statements/Post/at-home-genetic-testing-position-statement,"National Society of Genetic Counselors (NSGC)","Direct-to-Consumer Testing,Genetic Privacy","June 24, 2023",,,, "Advancing Research and Privacy Protections",https://www.ashg.org/advocacy/statement-archive/advancing-research-privacy-protections/,"American Society of Human Genetics (ASHG)","Genetic Privacy,Genetic Research","September 5, 2019",,,, "Stewardship of patient genomic data: A policy statement of the American College of Medical Genetics and Genomics (ACMG)",https://www.acmg.net/PDFLibrary/Stewardship_of_genomic_data.pdf,"American College of Medical Genetics and Genomics (ACMG)","Genetic Privacy","October 29, 2021",,,,