[ { "id": "al-hb-21-2024", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Alabama Genetic Data Privacy Act", "subtitle": "Privacy requirements for direct-to-consumer genetic testing companies", "identifier": "HB 21 (2024)", "bill_number": "HB 21", "session": "2024 Regular Session", "statute_citation": "Ala. Code §§ 8-43-1 to 8-43-6", "status": "enacted", "introduced_date": "2024-02-06", "signed_date": "2024-05-16", "effective_date": "2024-10-01", "last_action_date": "2024-05-16", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "direct-to-consumer-testing", "consent", "data-sharing", "data-deletion", "sample-destruction" ], "summary": "Alabama HB 21 enacted the Alabama Genetic Data Privacy Act, which regulates covered direct-to-consumer genetic testing companies and their contractors. The act requires privacy notices, consent for specified uses and disclosures, and procedures for accessing or deleting genetic data and destroying samples.", "legal_effects": "Covered companies must obtain express consent for specified data collection, use, retention, and disclosure practices. The act also requires informed consent for certain research, reasonable security practices, deletion and sample-destruction procedures, and confidentiality protections. The Attorney General may seek civil remedies for violations.", "plain_language": "A covered consumer genetic testing company must explain how it uses genetic information and obtain specific permission for several uses. Consumers may access their data, revoke consent, and request deletion or sample destruction within the act's stated procedures.", "limitations": "The act is limited to entities meeting its definition of a genetic testing company and contains exclusions for health care providers, covered clinical activities, research, and other specified circumstances.", "primary_sources": [ { "title": "HB 21 enrolled act", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2024RS/HB21-enr.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" }, { "title": "Alabama Code § 8-43-2", "url": "https://alison.legislature.state.al.us/code-of-alabama?section=8-43-2", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 21 legislative history", "url": "https://legiscan.com/AL/bill/HB21/2024", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "history": [ { "date": "2024-02-06", "event": "Bill introduced and referred to the House Judiciary Committee.", "source": "Alabama Legislature" }, { "date": "2024-02-20", "event": "House passed the bill.", "source": "Alabama Legislature" }, { "date": "2024-05-08", "event": "Senate passed the bill as amended.", "source": "Alabama Legislature" }, { "date": "2024-05-16", "event": "Enacted as Act 2024-384.", "source": "Alabama Legislature" }, { "date": "2024-10-01", "event": "Act became effective.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the enrolled act, current code, and legislative history.", "source": "Project review" } ] }, { "id": "al-hb-263-2026", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Biological and neural data in health and fitness apps", "subtitle": "Proposed consent requirements for app-based data practices", "identifier": "HB 263 (2026)", "bill_number": "HB 263", "session": "2026 Regular Session", "status": "died", "introduced_date": "2026-01-15", "last_action_date": "2026-03-11", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "data-sharing" ], "summary": "Alabama HB 263 proposed restrictions on health and fitness apps that collect biological or neural data. Biological data included information generated by processing or analyzing genetic and other biological properties when used to identify an individual.", "legal_effects": "The engrossed bill would have required express consent for specified transfers, disclosures, secondary uses, and marketing based on biological or neural data. It would have authorized Attorney General enforcement and civil penalties after an opportunity to cure.", "plain_language": "A covered health or fitness app would have needed permission before sharing biological or neural data or using it beyond the service a consumer requested. The bill passed the House but did not receive a final Senate vote.", "limitations": "The proposal was limited to health and fitness apps meeting its definitions and contained exemptions for regulated health information, research, insurance activities, deidentified data, security practices, and other uses. It did not become law.", "primary_sources": [ { "title": "HB 263 engrossed bill", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2026RS/HB263-eng.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 263 legislative history", "url": "https://legiscan.com/AL/bill/HB263/2026", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "related_records": [ { "record_id": "al-hb-436-2025", "relationship": "Successor to the broader 2025 proposal" } ], "history": [ { "date": "2026-01-15", "event": "Bill introduced and referred to the House Judiciary Committee.", "source": "Alabama Legislature" }, { "date": "2026-02-26", "event": "House passed the bill as amended.", "source": "Alabama Legislature" }, { "date": "2026-03-11", "event": "Senate committee reported the bill and placed it on the calendar.", "source": "Alabama Legislature" }, { "date": "2026-04-09", "event": "Bill died when the 2026 regular session adjourned without final passage.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the engrossed bill and legislative history.", "source": "Project review" } ] }, { "id": "al-hb-265-2026", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Unlawful use of DNA", "subtitle": "Renewed proposal for criminal offenses involving nonconsensual DNA use", "identifier": "HB 265 (2026)", "bill_number": "HB 265", "session": "2026 Regular Session", "status": "died", "introduced_date": "2026-01-15", "last_action_date": "2026-02-05", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "data-sharing", "data-sale", "law-enforcement" ], "summary": "Alabama HB 265 renewed a proposal to create first-, second-, and third-degree offenses for specified intentional collection, retention, testing, disclosure, sale, or transfer of another person's DNA sample or genetic data without express consent.", "legal_effects": "The bill would have assigned different criminal penalties to unauthorized DNA sale or transfer, genetic testing or disclosure, and specified collection or retention. It used definitions from Alabama's Genetic Data Privacy Act and included stated exceptions.", "plain_language": "This 2026 proposal revisited the criminal DNA-use protections considered in 2025. It reached the House calendar but did not receive a House floor vote and did not become law.", "limitations": "The bill included exceptions for legal process, law enforcement and forensic databases, and genetic testing companies complying with state law. Its proposed October 1, 2026 effective date never became operative.", "primary_sources": [ { "title": "HB 265 introduced bill", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2026RS/HB265-int.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 265 legislative history", "url": "https://legiscan.com/AL/bill/HB265/2026", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "related_records": [ { "record_id": "al-hb-449-2025", "relationship": "Reintroduction of the 2025 proposal" } ], "history": [ { "date": "2026-01-15", "event": "Bill introduced and referred to the House Judiciary Committee.", "source": "Alabama Legislature" }, { "date": "2026-02-05", "event": "Bill read a second time and placed on the House calendar.", "source": "Alabama Legislature" }, { "date": "2026-04-09", "event": "Bill died when the 2026 regular session adjourned without final passage.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the introduced bill and legislative history.", "source": "Project review" } ] }, { "id": "al-hb-351-2026", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Alabama Personal Data Protection Act", "subtitle": "Comprehensive consumer-data protections that include genetic data", "identifier": "HB 351 (2026)", "bill_number": "HB 351", "session": "2026 Regular Session", "statute_citation": "Ala. Code Title 8, Chapter 44", "status": "enacted", "introduced_date": "2026-01-29", "signed_date": "2026-04-17", "effective_date": "2027-05-01", "last_action_date": "2026-04-17", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "data-sharing", "data-sale", "data-deletion" ], "summary": "Alabama HB 351 enacted the Alabama Personal Data Protection Act. The act classifies genetic or biometric data processed to uniquely identify a person as sensitive data and establishes broader consumer rights and controller obligations for covered businesses.", "legal_effects": "Covered controllers must obtain consent before processing sensitive data and must comply with duties concerning transparency, data minimization, security, consumer requests, targeted advertising, personal-data sales, and certain profiling. The Attorney General has exclusive enforcement authority.", "plain_language": "Beginning May 1, 2027, qualifying businesses will have to follow statewide rules for personal data. Genetic identifying data receives the act's sensitive-data protections, including a general consent requirement for its processing.", "limitations": "The act applies only when its business and processing thresholds are met and contains entity-level and data-level exemptions, including several involving health care and federally regulated information. It was enacted in 2026 but is not effective until May 1, 2027.", "primary_sources": [ { "title": "HB 351 enrolled act", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2026RS/HB351-enr.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" }, { "title": "Alabama Code § 8-44-1", "url": "https://alison.legislature.state.al.us/code-of-alabama?section=8-44-1", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 351 legislative history", "url": "https://legiscan.com/AL/bill/HB351/2026", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "history": [ { "date": "2026-01-29", "event": "Bill introduced and referred to the House Commerce and Small Business Committee.", "source": "Alabama Legislature" }, { "date": "2026-02-24", "event": "House passed the bill as amended.", "source": "Alabama Legislature" }, { "date": "2026-04-07", "event": "Senate passed the bill as amended and the House concurred.", "source": "Alabama Legislature" }, { "date": "2026-04-17", "event": "Enacted as Act 2026-552.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the enrolled act, current code, and legislative history.", "source": "Project review" } ] }, { "id": "al-hb-436-2025", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Biological and neural data protections", "subtitle": "Proposed consent requirements for covered entities", "identifier": "HB 436 (2025)", "bill_number": "HB 436", "session": "2025 Regular Session", "status": "died", "introduced_date": "2025-03-18", "last_action_date": "2025-03-18", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "data-sharing" ], "summary": "Alabama HB 436 proposed restrictions on covered entities that maintain biological or neural data. Its biological-data definition included data generated through processing or analysis of genetic and other biological properties.", "legal_effects": "The bill would have required express consent for specified transfers, disclosures, secondary uses, and marketing based on biological or neural data. It would have authorized Attorney General enforcement and civil penalties of up to $3,000 per violation after an opportunity to cure.", "plain_language": "Covered businesses would have needed permission before sharing biological or neural data or using it beyond the service requested by a consumer. The bill remained in committee and did not become law.", "limitations": "The bill contained exemptions for specified health information, research, insurance activities, legal obligations, security practices, and other uses. Whether an entity or data practice would have been covered depended on the bill's definitions and exceptions.", "primary_sources": [ { "title": "HB 436 introduced bill", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2025RS/HB436-int.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 436 legislative history", "url": "https://legiscan.com/AL/bill/HB436/2025", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "related_records": [ { "record_id": "al-hb-263-2026", "relationship": "Succeeded by a narrower 2026 proposal" } ], "history": [ { "date": "2025-03-18", "event": "Bill introduced and referred to the House Insurance Committee.", "source": "Alabama Legislature" }, { "date": "2025-05-14", "event": "Bill died when the 2025 regular session adjourned without further action.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the introduced bill and legislative history.", "source": "Project review" } ] }, { "id": "al-hb-449-2025", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Unlawful use of DNA", "subtitle": "Proposed criminal offenses for nonconsensual DNA collection and use", "identifier": "HB 449 (2025)", "bill_number": "HB 449", "session": "2025 Regular Session", "status": "died", "introduced_date": "2025-03-18", "last_action_date": "2025-05-06", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "data-sharing", "data-sale", "law-enforcement" ], "summary": "Alabama HB 449 proposed first-, second-, and third-degree offenses for specified intentional collection, retention, testing, disclosure, sale, or transfer of another person's DNA sample or genetic data without express consent.", "legal_effects": "The engrossed bill would have assigned different criminal penalties to the sale or transfer of DNA, unauthorized genetic testing or disclosure, and specified collection or retention of DNA samples. It defined genetic data and genetic testing by reference to Alabama's Genetic Data Privacy Act.", "plain_language": "The proposal would have made several kinds of intentional, nonconsensual DNA collection and use criminal offenses. It passed the House but did not receive a final Senate vote and did not become law.", "limitations": "The engrossed bill included exceptions for legal process, law enforcement and forensic databases, specified health care activities, and genetic testing companies complying with state law. Its provisions never took effect.", "primary_sources": [ { "title": "HB 449 engrossed bill", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2025RS/HB449-eng.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama HB 449 legislative history", "url": "https://legiscan.com/AL/bill/HB449/2025", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "related_records": [ { "record_id": "al-hb-265-2026", "relationship": "Reintroduced as a 2026 proposal" } ], "history": [ { "date": "2025-03-18", "event": "Bill introduced and referred to the House Judiciary Committee.", "source": "Alabama Legislature" }, { "date": "2025-04-29", "event": "House passed the bill as amended.", "source": "Alabama Legislature" }, { "date": "2025-05-06", "event": "Senate committee reported the bill and placed it on the calendar.", "source": "Alabama Legislature" }, { "date": "2025-05-14", "event": "Bill died when the 2025 regular session adjourned without final passage.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the engrossed bill and legislative history.", "source": "Project review" } ] }, { "id": "al-sb-58-2024", "jurisdiction": "Alabama", "jurisdiction_code": "AL", "jurisdiction_type": "state", "record_type": "legislation", "title": "Genetic privacy and insurance protections", "subtitle": "Proposed consent, confidentiality, ownership, and insurance restrictions", "identifier": "SB 58 (2024)", "bill_number": "SB 58", "session": "2024 Regular Session", "status": "died", "introduced_date": "2024-02-06", "last_action_date": "2024-02-06", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "genetic-discrimination", "consent", "data-sharing", "health-insurance", "life-insurance", "long-term-care-insurance" ], "summary": "Alabama SB 58 proposed express-consent requirements for collecting, analyzing, using, retaining, or transferring DNA. It also proposed confidentiality and ownership protections for DNA-analysis results and restrictions on insurer use of genetic information.", "legal_effects": "The bill would have established criminal penalties for specified DNA collection, analysis, disclosure, and transfer without express consent. It also would have restricted health, life, and long-term care insurers from requiring or using genetic information for specified coverage and premium decisions.", "plain_language": "The proposal would have given individuals greater control over DNA samples and test results and would have limited how several kinds of insurers could use genetic information. It did not become law.", "limitations": "The bill contained exceptions for criminal investigations, court orders, medical care, regulated research, paternity matters, and other specified uses. It remained in the Senate Banking and Insurance Committee and died at the end of the 2024 session.", "primary_sources": [ { "title": "SB 58 introduced bill", "url": "https://alison.legislature.state.al.us/files/pdf/SearchableInstruments/2024RS/SB58-int.pdf", "publisher": "Alabama Legislature", "accessed_date": "2026-08-31" } ], "secondary_sources": [ { "title": "Alabama SB 58 legislative history", "url": "https://legiscan.com/AL/bill/SB58/2024", "publisher": "LegiScan", "accessed_date": "2026-08-31" } ], "history": [ { "date": "2024-02-06", "event": "Bill introduced and referred to the Senate Banking and Insurance Committee.", "source": "Alabama Legislature" }, { "date": "2024-05-09", "event": "Bill died when the 2024 regular session adjourned without further action.", "source": "Alabama Legislature" }, { "date": "2026-08-31", "event": "Record created from the introduced bill and legislative history.", "source": "Project review" } ] }, { "id": "ca-sb-41-2021", "jurisdiction": "California", "jurisdiction_code": "CA", "jurisdiction_type": "state", "record_type": "legislation", "title": "Genetic Information Privacy Act", "subtitle": "Privacy requirements for direct-to-consumer genetic testing companies", "identifier": "SB 41 (2021)", "bill_number": "SB 41", "session": "2021-2022", "statute_citation": "California Civil Code §§ 56.18-56.186", "status": "enacted", "introduced_date": "2020-12-07", "signed_date": "2021-10-06", "effective_date": "2022-01-01", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "direct-to-consumer-testing", "consent", "data-deletion", "sample-destruction" ], "summary": "California SB 41 established requirements for covered direct-to-consumer genetic testing companies, including privacy notices, express consent for specified uses and disclosures, security practices, access and deletion procedures, and biological-sample destruction following consent revocation.", "legal_effects": "The act requires covered companies to publish specified notices, obtain separate express consent for listed uses and disclosures, provide access and deletion mechanisms, maintain reasonable security practices, and honor qualifying consent revocations.", "plain_language": "Covered companies must explain their genetic-data practices and obtain specific consent for several uses. Consumers can revoke consent and request account or data deletion and sample destruction, subject to the law's scope and exceptions.", "limitations": "The act contains definitions and exclusions. Whether a company, service, sample, or use is covered requires review of the current statutory text.", "primary_sources": [ { "title": "SB 41 bill text, chaptered version", "url": "https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB41", "publisher": "California Legislative Information", "accessed_date": "2026-08-31" } ], "secondary_sources": [], "history": [ { "date": "2020-12-07", "event": "Bill introduced.", "source": "California Legislative Information" }, { "date": "2021-10-06", "event": "Approved by the Governor and chaptered.", "source": "California Legislative Information" }, { "date": "2026-08-31", "event": "Record created from the chaptered bill text.", "source": "Project review" } ] }, { "id": "federal-gina-2008", "jurisdiction": "United States", "jurisdiction_code": "US", "jurisdiction_type": "federal", "record_type": "statute", "title": "Genetic Information Nondiscrimination Act of 2008", "subtitle": "Federal protections in health coverage and employment", "identifier": "Public Law 110-233", "statute_citation": "122 Stat. 881", "status": "statute", "signed_date": "2008-05-21", "effective_date": null, "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-discrimination", "employment", "health-insurance" ], "summary": "GINA restricts the use of genetic information in health coverage and employment. Its health-coverage and employment provisions have different effective timelines and contain definitions, exceptions, and enforcement provisions that should be reviewed in the statutory text.", "legal_effects": "Title I amends federal health-coverage laws to restrict genetic-information requests and uses by covered plans and issuers. Title II restricts covered employers and other employment entities from acquiring or using genetic information, subject to statutory exceptions.", "plain_language": "The federal law generally bars covered health insurers and employers from using genetic information in specified decisions. It does not create the same protections for life, disability, or long-term care insurance.", "limitations": "This record is a high-level summary. Coverage depends on the actor, benefit, employment context, and statutory exception involved.", "primary_sources": [ { "title": "Genetic Information Nondiscrimination Act of 2008, Public Law 110-233", "url": "https://www.govinfo.gov/content/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf", "publisher": "U.S. Government Publishing Office", "accessed_date": "2026-08-31" } ], "secondary_sources": [], "history": [ { "date": "2008-05-21", "event": "Signed into law.", "source": "Public Law 110-233" }, { "date": "2026-08-31", "event": "Record created from the enrolled public law.", "source": "Project review" } ] }, { "id": "federal-hipaa-genetic-information-2013", "jurisdiction": "United States", "jurisdiction_code": "US", "jurisdiction_type": "federal", "record_type": "regulation", "title": "HIPAA Privacy Rule treatment of genetic information", "subtitle": "Genetic information as protected health information", "identifier": "78 FR 5566", "regulatory_citation": "45 C.F.R. Parts 160 and 164", "status": "approved", "effective_date": "2013-03-26", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "health-insurance" ], "summary": "The 2013 HIPAA final rule implemented GINA-related changes by treating genetic information as health information and restricting covered health plans from using or disclosing genetic information for underwriting.", "legal_effects": "The final rule revised HIPAA definitions and privacy provisions so genetic information is treated as health information and covered health plans may not use or disclose it for underwriting purposes.", "plain_language": "Genetic information held by a HIPAA-covered entity can be protected health information. HIPAA does not cover every company or every consumer genetic testing service.", "limitations": "HIPAA coverage depends on whether the organization and information fall within the rule. The compliance date followed the rule's effective date.", "primary_sources": [ { "title": "Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules", "url": "https://www.federalregister.gov/documents/2013/01/25/2013-01073/modifications-to-the-hipaa-privacy-security-enforcement-and-breach-notification-rules-under-the", "publisher": "Office of the Federal Register", "accessed_date": "2026-08-31" } ], "secondary_sources": [], "history": [ { "date": "2013-01-25", "event": "Final rule published in the Federal Register.", "source": "78 FR 5566" }, { "date": "2026-08-31", "event": "Record created from the final rule.", "source": "Project review" } ] }, { "id": "federal-nih-gds-policy-2014", "jurisdiction": "United States", "jurisdiction_code": "US", "jurisdiction_type": "federal", "record_type": "policy", "title": "NIH Genomic Data Sharing Policy", "subtitle": "Expectations for sharing large-scale human and non-human genomic data", "identifier": "NOT-OD-14-124", "status": "approved", "effective_date": "2015-01-25", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "research", "consent", "data-sharing" ], "summary": "The NIH Genomic Data Sharing Policy establishes expectations for the broad and responsible sharing of large-scale genomic data generated by NIH-funded research and describes institutional certification, consent, repository, and data-access considerations.", "legal_effects": "The policy sets NIH funding expectations for data-sharing plans, submission timelines, institutional certification, repositories, and access mechanisms for covered large-scale genomic data.", "plain_language": "NIH-funded projects within the policy's scope are expected to plan for genomic data sharing. Human data may be shared through controlled-access or unrestricted mechanisms depending on consent and other review requirements.", "limitations": "This is an NIH funding policy, not a statute of general application. Project coverage and current operational requirements must be checked against NIH guidance.", "primary_sources": [ { "title": "NIH Genomic Data Sharing Policy", "url": "https://grants.nih.gov/grants/guide/notice-files/not-od-14-124.html", "publisher": "National Institutes of Health", "accessed_date": "2026-08-31" } ], "secondary_sources": [], "history": [ { "date": "2014-08-27", "event": "Final policy announced.", "source": "NOT-OD-14-124" }, { "date": "2015-01-25", "event": "Policy became effective for covered applications and proposals.", "source": "NOT-OD-14-124" }, { "date": "2026-08-31", "event": "Record created from the official policy notice.", "source": "Project review" } ] }, { "id": "ny-cvr-79-l", "jurisdiction": "New York", "jurisdiction_code": "NY", "jurisdiction_type": "state", "record_type": "statute", "title": "Confidentiality of records of genetic tests", "subtitle": "Consent, confidentiality, and biological-sample requirements", "identifier": "New York Civil Rights Law § 79-l", "statute_citation": "N.Y. Civil Rights Law § 79-l", "status": "statute", "last_reviewed": "2026-08-31", "record_version": "1.0", "verification_status": "verified-primary", "topics": [ "genetic-privacy", "consent", "research", "sample-destruction" ], "summary": "New York Civil Rights Law section 79-l establishes written informed-consent requirements for genetic testing, treats genetic-test records and results as confidential, and sets rules for disclosure, research uses, retention, and destruction of biological samples, subject to stated exceptions.", "legal_effects": "The section generally requires written informed consent before genetic testing and disclosure, deems test records and results confidential, and establishes rules for research use, retention, and sample destruction.", "plain_language": "A person generally must give specific written consent before a genetic test is performed or results are disclosed. The law also addresses how samples may be retained or used for research.", "limitations": "The section includes exceptions for court orders, specified public-health programs, research, insurers, and other circumstances. This summary does not resolve whether an exception applies.", "primary_sources": [ { "title": "New York Civil Rights Law § 79-l", "url": "https://www.nysenate.gov/legislation/laws/CVR/79-L", "publisher": "New York State Senate", "accessed_date": "2026-08-31" } ], "secondary_sources": [], "history": [ { "date": "2026-08-31", "event": "Record created from the current consolidated law page.", "source": "Project review" } ] } ]