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Use of Residual Newborn Screening Specimens

Rules concerning retained specimens collected through newborn screening.

Records grouped under the same topic may offer different rights and protections.

This database: 0 records

NHGRI database archive: 42 records

Filter all 42 use of residual newborn screening specimens records

Records about use of residual newborn screening specimens

Showing 20 of 42; records from this database appear first.

Selected laws and policies about use of residual newborn screening specimens
JurisdictionLaw or policyTopicsStatusSummary
Delaware2021 State Bills Delaware 2021 HB 184NHGRI archive2021 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensEnactedAmends the provision pertaining to use of stored blood specimens. Removes language permitting the Division of Public Health use of specimens for (1) quality assurance or performance improvement activities, including pilot studies, when a new disorder is being considered for addition to the panel; or (2) any other purpose authorized by law. research use in population based studies of de-identified specimens is permitted with parental consent. However, an amendment to the existing statute requires the destruction of blood specimens after screening and testing are complete. Signed by the Governor on 9/15/2021. Effective upon Governor's signature.
Missouri2021 State Bills Missouri 2021 HB 995NHGRI archive2021 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensDiedAmends statute section pertaining to the release of residual newborn screening specimens for anonymous scientific study. Requires consent of parent or legal guardian be obtained for such release at the time of specimen collection. 2/23/2021 - House public hearing completed. Died.
Connecticut2017 State Bills Connecticut 2017 HB 7222NHGRI archive2017 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensEnactedRequires that all research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the health commissioner. 6/23/2017 Signed by the Governor. Effective 10/1/2017.
Iowa2017 State Bills Iowa 2017 HF 31NHGRI archive2017 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedRequires the Center for Congenital and Inherited Disorders to adopt rules to prohibit the retention and ensure proper disposal of residual newborn screening specimens. The Center must incinerate any residual specimens being stored before the effective date of the bill. Died.
California2015 State Bills California 2015 AB 170NHGRI archive2015 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedStates that a newborn sample may not be used for medical research if a parent or guardian of the newborn child objects to the testing program. The bill would require the department to provide information about the testing program, and to obtain a form signed by the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child�s blood sample for medical research. Died.
Delaware2015 State Bills Delaware 2015 SB 58NHGRI archive2015 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensEnactedProhibits utilizing newborn screening stored blood specimens or stored data without parental consent, except for population based studies in which all identifying information is removed. Blood spots may be used within the Division of Public Health for quality assurance or performance improvement activities, including pilot studies when a new disorder is being considered for addition to the panel, or may be used by Division of Public Health for any other purpose authorized by law. Jul 15, 2015 - Signed by Governor.
Indiana2015 State Bills Indiana 2015 SB 323NHGRI archive2015 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensDiedAmends the state's newborn screening statute. The bill requires consent to release newborn's residual blood specimen for epidemiological survey and research. Died.
New York2015 State Bills New York 2015 A312NHGRI archive2015 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedRequires parental consent for newborn DNA storage. The bill states that no test, DNA, blood spot, or other genetic information may be retained with an infant's identifying information other than for the purpose of newborn screening without parental consent. Died.
Georgia2014 State Bills Georgia 2014 SB 167NHGRI archive2014 legislative sessionPrimary sourcePrivacy, Use of Residual Newborn Screening SpecimensDiedProhibits the collection of student or family information by any state agency, local school system or educational institution, including biometric data (defined to include DNA sequence and newborn screening information), except as may be necessary to facilitate the instruction of special needs students or students participating in school physical education and athletic programs. Died.
Minnesota2014 State Bills Minnesota 2014 HF 2402NHGRI archive2014 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedThe original version of this bill amended the newborn screening law pertaining to storage of blood samples. All language was subsequently deleted pertaining to the newborn screening program.
Minnesota2014 State Bills Minnesota 2014 HF 2526/SF 2047NHGRI archive2014 legislative sessionPrimary sourceResearch, Use of Residual Newborn Screening SpecimensDiedThe bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.
Minnesota2013 State Bills Minnesota 2013 HF 589/SF 1017NHGRI archive2013 legislative sessionPrimary sourcePrivacy, Research, Use of Residual Newborn Screening SpecimensDiedThis bill specifies that newborn screening activities are subject to state law on the collection, storage, use, and dissemination of genetic information. A new statute section also is created on the treatment of biological specimens and health data held by the health department and health boards. The new statute section allows the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection. Died.
Minnesota2013 State Bills Minnesota 2013 SF 745/HF 695NHGRI archive2013 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensEnactedAmends the statute governing the collection, storage, use and dissemination of genetic information by adding a section to specify that newborn screening activities are subject to the law. Requires the Commissioner of Health to evaluate the scientific and medical validity of a comprehensive and sustainable long-term storage and use plan for newborn screening test results. Approved by the Governor May 23, 2013.
New York2013 State Bills New York 2013 A506NHGRI archive2013 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedThis bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died.
Oklahoma2013 State Bills Oklahoma 2013 HB 1384NHGRI archive2013 legislative sessionPrimary sourcePrivacy, Use of Residual Newborn Screening SpecimensEnactedThis bill creates the Parents' Bill of Rights. Rights under the bill include the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order. Signed by the Governor on May 12, 2014.
Minnesota2012 State Bills Minnesota 2012 HF 2967NHGRI archive2012 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensEnactedDuring the period in which residual newborn screening specimens is retained, the health department may use blood samples and test results for newborn screening program operations. Newborn screening operations are defined to specifically exclude research, public health studies, or the development of new newborn screening tests. Signed by the Governor on May 10, 2012.
Massachusetts2011 State Bills Massachusetts 2011 S.1080NHGRI archive2011 legislative sessionPrimary sourceHealth Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening SpecimensDiedThis bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Measure failed.
New York2011 State Bills New York 2011 A1840NHGRI archive2011 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensDiedThis bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed.
North Dakota2011 State Bills North Dakota 2011 SB 2067NHGRI archive2011 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensEnactedThis bill amends the statute that allows the health council to authorize the use of newborn metabolic screening tests for legitimate research purposes by broadening the term "newborn metabolic screening tests" to include "newborn metabolic and genetic disease screening tests." Signed by the Governor April 26, 2011.
Oklahoma2010 State Bills Oklahoma 2010 SB 1250NHGRI archive2010 legislative sessionPrimary sourceUse of Residual Newborn Screening SpecimensEnactedThis bill requires parental consent required to store, transfer, use or database DNA from any newborn child. Signed by the Governor May 11, 2010.