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Publication
Questions, complexities, and limitations in disclosing individual genetic test results
Am J Bioeth -
News
Using a Family Advisory Council to Understand the Informational Needs of Prospective Gene Therapy Trial Participants: An Interview with the Co-PIs of the SCDGENE CERA Working Group
Sickle cell disease (SCD), characterized by severe pain crisis and progressive organ damage as well as early death, is one of the most common inherited blood disorders in the world. However, since 90…- sickle cell disease
- gene therapy
- Sickle Cell
- gene therapies
- community based participatory research
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Additional Resource
Consensus Study Report, Environmental Effects of Transgenic Plants: The Scope and Adequacy of Regulation, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2002)
This National Academies Press publication documents the evidence-based findings, conclusions, and recommendations of a committee of experts on transgenic crops and public involvement in biotechnology…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
A Synthesis of Relevant National Academies Reports, Framework for Addressing Ethical Dimensions of Emerging and Innovative Biomedical Technologies, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2019)
This National Academies Press Publication synthesizes prior NASEM reports on ethics principles and considerations for emerging biomedical technologies for use in establishing guidelines for future…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
Workshop Proceedings, Making the Living World Engineerable: Science, Practice, and Policy, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2016)
This National Academies Press report summarizes the proceedings of a workshop that explored developments in synthetic biology; possible risks and benefits; and associated legal, regulatory, and…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
Consensus Study Report, Extending Life, Enhancing Life: A National Research Agenda on Aging, the National Academies of Sciences, Engineering, and Medicine (NASEM) (1991)
This National Academies Press publication outlines fifteen research priorities in five key areas (including biomedical ethics) to address to quality of life issues experienced by older individuals.- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Additional Resource
Consensus Study Report, Gene Drives on the Horizon: Advancing Science, Navigating Uncertainty, and Aligning Research with Public Values, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2016)
This National Academies Press publication outlines the state of the science, ethics, public engagement, and risk assessment and offers principles to guide responsible practices in gene drive research.- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Collection
Establishing Affirming Genetic Counseling Services for Transgender, Gender-Expansive, and Intersex Patients
Sex and gender diversity have long existed across cultures throughout history. Despite this, the harmful perpetuation of the gender and sex binary persists within all specialties of medicine,…- TGDI
- gender affirming care
- intersex
- transgender
- gender-diverse
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Additional Resource
Consensus Study Report, Animal Biotechnology: Science-Based Concerns, the National Academies of Sciences, Engineering, and Medicine (NASEM) (2002)
This National Academies Press publication documents the evidence-based consensus of a committee of experts on the implications of the use of genetic-based animal biotechnology in the areas of safety…- NASEM
- ELSI
- report
- consensus study
- workshop proceeding
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Publication
A painting of the Christ Child with bowed legs: Rickets in the Renaissance
American Journal of Medical Genetics Part C: Seminars in Medical Genetics