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Ethical Issues Related to Research Uses of Residual Dried Bloodspots from Newborn Screening
Newborn screening for metabolic and genetic disease is arguably one of the greatest public health interventions—notwithstanding some ethical challenges and opportunities for improvement—because it…- residual specimen
- Newborn screening
- genetic disease
- public attitudes
- Consent
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Additional Resource
Ethics Committee Opinion, Disclosure of Sex When Incidentally Revealed as Part of Preimplantation Genetic Testing (PGT), American Society for Reproductive Medicine (ASRM)
This ASRM Ethics Committee opinion published in 2018 outlines key points to consider in the development of identification and disclosure of sex policies at clinics that perform PGT with a primary…- ethics committee opinion
- preimplantation genetic testing
- PGT
- sex policies
- American Society for Reproductive Medicine
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Additional Resource
Workshop Proceedings, Stem Cell Therapies: Opportunities for Ensuring the Quality and Safety of Clinical Offerings: Summary of a Joint Workshop, the National Academy of Sciences & the International Society for Stem Cell Research (2014)
This National Academies Press publication summarizes the proceedings of a workshop that explored the evidence base for clinical application of stem cell technologies and ways to assure quality. The…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
New Jersey 2020 State Bills (New Jersey 2020 S2069)
Exempts certain health information, including genetic information, contained in 9-1-1 calls from definition of government record. 3/16/2020 Introduced in the Senate, Referred to Senate State…- state bill
- bill
- bill status pending
- New Jersey
- genetic privacy
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Additional Resource
Proceedings, Positioning Synthetic Biology to Meet the Challenges of the 21st Century: Summary Report of a Six Academies Symposium Series, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2013)
This National Academies Press publication summarizes the proceedings of a series of international symposia that explored scientific, technical, and policy issues associated with synthetic biology.…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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News
New ELSIconversations with the Ancestry and Diversity Working Group of ClinGen
The Ancestry and Diversity Working Group (ADWG) of the Clinical Genome Resource (ClinGen) was founded in 2017, with the goal of providing guidance about how population descriptors such as race,…- population descriptors
- race and genetics
- race and bioethics
- Genetics and Human Ancestry
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Additional Resource
Massachusetts 2019 State Bills (Massachusetts 2019 S781)
Prohibits local or state administrative, legislative or regulatory body or instrumentality to from engaging in a discriminatory land use practice, including practices based on genetic information. 2/…- state bill
- bill
- bill status pending
- Massachusetts
- employment nondiscrimination
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Additional Resource
Oklahoma 2011 State Bills (Oklahoma 2011 SB 836)
This bill amends statutes pertaining to discriminatory practices in employment, housing, and public accommodations. The bill provides exclusive remedies for individuals alleging discrimination in…- state bill
- bill
- bill status died
- Oklahoma
- employment nondiscrimination
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Additional Resource
Louisiana State Statute (Louisiana: LRS 22:1964)
It is an unfair method of competition and deceptive act and practice in the business of insurance to discriminate against an insured, enrollee, or beneficiary in the issuance, payment of benefits,…- state statute
- Louisiana
- health insurance nondiscrimination
- disability
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Additional Resource
Florida 2018 State Bills (Florida 2018 HB 855)
Prohibits life insurers and long-term care insurers, except under certain circumstances, from canceling, limiting, or denying coverage, or establishing differentials in premium rates, based on…- state bill
- bill
- Florida
- life insurance coverage
- life insurance nondiscrimination