Research
Rules and policies concerning genetic information or samples used in research.
Records grouped under the same topic may offer different rights and protections.
This database: 2 records
NHGRI database archive: 85 records
Records about research
Showing 20 of 87; records from this database appear first.
| Jurisdiction | Law or policy | Topics | Status | Summary |
|---|---|---|---|---|
| New York | Confidentiality of records of genetic testsWho Owns Your DNA?StatutePrimary source | Privacy, Research | Statute | New York Civil Rights Law section 79-l generally requires written informed consent before a genetic test is performed and before results are disclosed. It also treats genetic-test records and results as confidential and regulates the retention, research use, and destruction of biological samples. |
| United States | NIH Genomic Data Sharing PolicyWho Owns Your DNA?Policy · Effective: January 25, 2015Primary source | Research | Approved | The NIH Genomic Data Sharing Policy applies to NIH-funded research that generates large-scale human or non-human genomic data and to later research using those data. For covered awards and contracts, compliance with the approved data-sharing plan becomes a term and condition of funding. |
| California | 2021 State Bills California 2021 AB 172NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfers the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. 10/8/21 Approved by the Governor. Effective immediately. |
| California | 2021 State Bills California 2021 SB 172NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Pending | Abolishes the Office of Health Information Integrity and the Office of Patient Advocate. Establishes the Center for Data Insights and Innovation within the California Health and Human Services Agency, and transfer the duties of the Office of Health Information Integrity and the Office of Patient Advocate to the center. Requires the center to: (1) assume responsibility for administering the State Committee for the Protection of Human Subjects; (2) keep all personal information obtained by the center confidential, as specified; and (3) meet various requirements with regard to the disclosure of information, including the development of a comprehensive program regarding the disclosure of information to qualified researchers according to specified data use agreements. Carries over to 2022. |
| California | 2021 State Bills California 2021 SB 41NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research. 10/6/2021 Approved by the Governor. Chaptered by Secretary of State. Chapter 596, Statutes of 2021. Effective January 1, 2022. |
| Delaware | 2021 State Bills Delaware 2021 HB 184NHGRI archive2021 legislative sessionPrimary source | Research, Use of Residual Newborn Screening Specimens | Enacted | Amends 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. |
| Florida | 2021 State Bills Florida 2021 HB 833NHGRI archive2021 legislative sessionPrimary source | Privacy, Research | Enacted | Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021. |
| Missouri | 2021 State Bills Missouri 2021 HB 995NHGRI archive2021 legislative sessionPrimary source | Research, Use of Residual Newborn Screening Specimens | Died | Amends 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. |
| New York | 2021 State Bills New York 2021 A3802NHGRI archive2021 legislative sessionPrimary source | Research | Pending | Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex. Requires reporting certain information relating to the collection of data. Provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Carries over to 2022. |
| New Hampshire | 2019 State Bills New Hampshire 2019 SB 262NHGRI archive2019 legislative sessionPrimary source | Research | Died | The informational content, including DNA/RNA and genetic sequences, contained in or on abandoned personal material is the property of the individual to whom it pertains regardless of its abandonment. No government or person may acquire, collect, retain or use of such informational content, with some exceptions such as for use by a law enforcement agency. Died on the table. |
| New York | 2019 State Bills New York 2019 A2409NHGRI archive2019 legislative sessionPrimary source | Research | Died | Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died. |
| New York | 2019 State Bills New York 2019 A8125NHGRI archive2019 legislative sessionPrimary source | Research | Died | Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19. |
| New York | 2019 State Bills New York 2019 S6448NHGRI archive2019 legislative sessionPrimary source | Research | Enacted | Amends the public health law, in relation to authorizing human research in compliance with federal law. 9/13/2019 Signed by the Governor. |
| Connecticut | 2017 State Bills Connecticut 2017 HB 7222NHGRI archive2017 legislative sessionPrimary source | Research, Use of Residual Newborn Screening Specimens | Enacted | Requires 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. |
| Maryland | 2017 State Bills Maryland 2017 HB 808NHGRI archive2017 legislative sessionPrimary source | Research | Died | Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died. |
| Maryland | 2017 State Bills Maryland 2017 SB 660NHGRI archive2017 legislative sessionPrimary source | Research | Died | Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died. |
| New York | 2017 State Bills New York 2017 A6878NHGRI archive2017 legislative sessionPrimary source | Research | Died | Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died. |
| Colorado | 2015 State Bills Colorado 2015 SB 77NHGRI archive2015 legislative sessionPrimary source | Privacy, Research | Died | Establishes a parental bill of rights. Requirements include parental consent in writing before any record of a minor child's blood or DNA is made, shared, or stored, unless such blood or DNA is otherwise required by law or court order. Died. |
| Delaware | 2015 State Bills Delaware 2015 SB 58NHGRI archive2015 legislative sessionPrimary source | Research, Use of Residual Newborn Screening Specimens | Enacted | Prohibits 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. |
| Indiana | 2015 State Bills Indiana 2015 SB 323NHGRI archive2015 legislative sessionPrimary source | Research, Use of Residual Newborn Screening Specimens | Died | Amends the state's newborn screening statute. The bill requires consent to release newborn's residual blood specimen for epidemiological survey and research. Died. |