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Video
ELSIcon2024: Impact of Returning Genomic Results Related to Adult-Onset Conditions to Pediatric Patients
ELSIcon2024 • Paper • June 11, 2024 Authors: Speaker: Adam Buchanan, MS, MPH, CGC (he/him/his) – Geisinger College of Health Sciences There is a dearth of empirical data on the…- ELSIcon2024
- 6th ELSI Congress
- Clinical genetic testing
- precision medicine
- Return of results and incidental findings
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Video
ELSIcon2024: Nothing About Us Without Us: Sharing Relevant Results with Communities that Provide Genomic Data
ELSIcon2024 • Paper • June 11, 2024 Authors: Speaker: Sarah LeBaron von Baeyer, PhD (she/her/hers) – Variant Bio Amidst the din of debate in ethical conduct of genomic research…- ELSIcon2024
- 6th ELSI Congress
- Community Engagement
- equity and justice in genetics
- Return of results and incidental findings
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Video
ELSIcon2024: Digital solutions to deliver genomic medicine: Taking a closer look at what’s under the hood
ELSIcon2024 • Panel • June 11, 2024 Authors: Corresponding Author: Catharine Wang, PhD, MSc (she/her/hers) – Boston University Panelist: Deborah Cragun, PhD, MS – University of…- ELSIcon2024
- 6th ELSI Congress
- Genetic Counseling
- Methodology and study design
- Return of results and incidental findings
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Additional Resource
New York 2013 State Bills (New York 2013 A2931)
This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. The bill addresses exclusion or inclusion of subjects to…- state bill
- bill
- bill status died
- New York
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Additional Resource
Minnesota 2013 State Bills (Minnesota 2013 HF 5)
Requires the Minnesota Insurance Marketplace to provide any data subject asked to supply private data with a notice of rights related to the handling of genetic information. The Minnesota Insurance…- state bill
- bill
- bill status enacted
- Minnesota
- genetic privacy
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Additional Resource
Michigan State Statute (Michigan: MCL §37.1201 et seq. )
An employer may discriminate against an individual because of genetic information that is unrelated to the individual's ability to perform the duties of a particular job or position. An employer…- state statute
- Michigan
- employment nondiscrimination
- Discrimination
- genetic information
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Additional Resource
Louisiana 2020 State Bills (Louisiana 2020 SB 204)
Requires coverage of cancer treatment targeting a specific genetic mutation. Prohibits a health coverage plan from denying coverage for the treatment of a metastatic or unresectable tumor with a…- state bill
- bill
- bill status pending
- Louisiana
- health insurance coverage
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Additional Resource
New York 2015 State Bills (New York 2015 A1219)
Establishes a genetics advisory council and requires the council to report to the Governor on several topics, including (1) creating an environment in which there is equitable access to the benefits…- state bill
- bill
- bill status died
- New York
- employment nondiscrimination
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Additional Resource
Arizona 2018 State Bills (Arizona 2018 HB 2450)
This bill allows the release of genetic testing and information derived from genetic testing to the following, if the necessary requirements are met: an individual or entity that provides services to…- bill
- genetic testing
- genetic information
- health care provider
- clinical laboratory
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Publication
Addendum to the points to consider in human somatic cell and gene therapy (1991)
Human Gene TherapyDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National…