LibGuides: Genetic Ethics in Hawaiʻi: Overview

Open Access References on General Bioethics and Genome Editing

These open access resources offer general knowledge, context and background to some of today's most pressing issues in bioethics. As the consequences of genetic engineering can propagate throughout large segments of humanity, these resources reflect local, national and global frameworks for ethical innovation.

Nuffield Council on Bioethics - Genome Editing: An Ethical Review
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The Nuffield Council on Bioethics is an independent UK organization informing policy and public debate in biological and medical research. This expert review addresses conceptual and descriptive issues regarding genome editing and identifies the key ethical questions that arise.

An abridged guide to the full review can be found here. In addition, there are in-depth reports on Gene editing and human reproduction (short guide here) and Genome editing and farmed animals.

: @Nuffbioethics

The National Academies Press - Human genome editing: Science, Ethics and Governance
The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide expert advice on some of the most pressing challenges facing the nation and the world. This text explores whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions.

Access to full document requires registering for a free account.

: @theNASEM

United Nations Educational, Scientific and Cultural Organization (UNESCO) - Bioethics Core Curriculum
The Universal Declaration on Bioethics and Human Rights embodies a set of global bioethical principles (not necessarily all related to genetics) that has been agreed upon by 191 Member States of UNESCO. This core curriculum articulates ethical principles that are shared by scientific experts, policy-makers and health professionals from various countries with different cultural, historical and religious backgrounds.

This core curriculum consists of Section 1 (core contents with objectives, syllabus and teacher manual for each unit of the curriculum) and Section 2 (the proposed study materials for each unit of the curriculum).

: @UNESCO

Northwest Association for Biomedical Research - An Ethics Primer
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This primer designed for secondary school science classrooms provides basic background on ethics as a general discipline, with straightforward descriptions of major ethical theories. Several decision-making frameworks are included to help students apply reasoned analysis to ethical issues.

: @nwabr

Indigenous Perspectives on Genetic Ethics

Despite differences in origin and methodology, Indigenous and Western perspectives on genealogy, heritage, identity and kinship often overlap in today's world. However, the age of gene-editing presents unique threats to Indigenous lifeways that warrant much more attention than they presently receive. Here is a growing catalog of subscription-free Indigenous perspectives to jumpstart exploration into this diverse, complex and historically-fraught space.

Genomic Research Through an Indigenous Lens: Understanding the Expectations
Peer-reviewed article. Garrison N, Hudson M, Ballantyne L, Garba I, Martinez A, Taualii M, Arbour L, Caron N, Rainie S. 2019. Annual Review of Genomics and Human Genetics 20:495-517.
Use ancient remains more wisely
Comment, Nature, August 28, 2019

: @keolufox

Genomics Blog: Summer internship for INdigenous peoples in Genomics
Podcast, Genomics Alberta Blog, July 12, 2019
Indigenous Perspectives and Gene Editing in Aotearoa New Zealand
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Peer-reviewed article. Hudson M, Mead ATP, Chagné D, Roskruge N, Morrison S, Wilcox PL, Allan AC. 2019. Frontiers in Bioengineering and Biotechnology. doi: 10.3389/fbioe.2019.00070
A framework for enhancing ethical genomic research with Indigenous communities
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Peer-reviewed article. Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA, Summer Internship for INdigenous Peoples (SING) Consortium. 2018. Nature Communications 9(2957)
The NIH Is Bypassing Tribal Sovereignty to Harvest Genetic Data From Native Americans
Article, Vice, December 21, 2018
IndiGENEity: A New Model for Genetic Privacy
Blog post, Innovative Genomics Institute Blog, November 13, 2017.

: @kevdox

Native American DNA: Tribal Belonging and the False Promise of Genetic Science
Book. TallBear, Kim. University of Minnesota Press, 2013. [Purchase required]

Listen free with a 30 day free trial of Audiobooks.com.

: @KimTallBear

Comments on Draft NIH Genomic Data Sharing Policy
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Report, National Congress of American Indians, November 20, 2013
American Indian & Alaska Native Genetics Resource Center
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Website, National Congress of American Indians Policy Research Center

See in particular Cases of How Tribes are Relating to Genetics Research, a compilation of useful case studies by Dr. Náníbaa' Garrison.

: @NanibaaGarrison

Indigenous Peoples and Biocolonialism: Defining the “Science of Environmental Justice” in the Century of the Gene
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Book chapter. Di Chiro G. (2007) Sandler R and Pizzullo P (Eds.) in Environmental Justice and Environmentalism. (pp. 251-283)

Online Resources for Ethics in Genetics

These are several online portals to academic, legal and educational resources for exploring ethics in genetics and genomics.

ELSIhub
One platform to enhance the production, sharing, and use of scholarship on the Ethical, Legal, and Social Implications of genetics and genomics.

: @elsihub

Georgetown University's Kennedy Institute of Ethics - Bioethics Research Library
This list of topical resources for "Genetics and Ethics" is part of a growing collection intended to help beginning scholars and researchers explore bioethics.

: @kieatgu

Center for Genetics and Society
The CGS is a non-profit organization working to encourage responsible uses and effective governance of human genetic and assisted reproductive technologies.

: @C_G_S

National Human Genome Research Institute - Policy Issues in Genomics
See how the NHGRI considers the ethical, legal, and social aspect of genomics research in their work, broken down into easy-to-understand, key issues.

: @genome_gov

United Nations Educational, Scientific and Cultural Organization (UNESCO) - Bioethics
Founded on the belief that there can be no peace without the intellectual and moral solidarity of humankind, UNESCO is the global forum for the international and transcultural discussion on bioethics.

: @UNESCO

American Society of Human Genetics - Policy and Advocacy
This webpage hosts a comprehensive listing of policy statements issued by the ASHG on a range of bioethical issues in human genetics.

: @GeneticsSociety

Online Blogs

Stay up-to-date on the latest in genome science and ethics by subscribing to these expert blogs.

The American Journal of Bioethics, Bioethics.net Blog - Hot Topics: Genetics
The American Journal of Bioethics is the leading journal in the field of bioethics, publishing original contributions that explore domestic and global ethical challenges in health care, medicine, public health, and the life sciences.

: @bioethics_net

Innovative Genomic Institute Blog
The Innovative Genomics Institute (IGI) formed as a partnership between the University of California, Berkeley and the University of California, San Francisco. IGI affiliates offer first-hand perspective from the forefront of genetic engineering research in their official blog.

: @igisci

Wellcome Sanger Institute Blog
The Wellcome Sanger Institute is a non-profit British genomics and genetics research institute. Their blog features stories from the cutting edge of genetic research.

: @sangerinstitute

University of Utah Health Sciences - Genomic Revolution Blog
The University of Utah is home to the Utah Genome Project, a large-scale genome sequencing and analysis initiative.

: @UofUHealth

GenomEthics Blog
Genetic counselors and social scientists based at the Society and Ethics Research group at the Wellcome Genome Campus (Cambridge, UK) explore the partnership between science and society.

: @genomethics

Research Ethics

University of Hawaiʻi SeaGrant - Kūlana Noiʻi
The Kūlana Noi'i provide guidance for building and sustaining not just working partnerships but long-term relationships between communities and researchers.

Paoakalani Declaration
On October 3-5, 2003, Kanaka Maoli of Ka Pae ʻĀina Hawaiʻi gathered at Ka ʻAha Pono - Native Hawaiian Intellectual Property Rights Conference - and united to express our collective right of self-determination to perpetuate our culture under threat of theft and commercialization of the traditional knowledge of Kanaka Maoli, our wahi pana and nā mea Hawaiʻi.