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The resources on this page serve as overview materials to begin examining bioethics in genetics from various philosophical, biomedical, legal and moral perspectives. It is important to note that the majority of bioethics scholarship has developed alongside advances in medicine. This resource does not intend to be a comprehensive guide to biomedical ethics. Rather, it synthesizes topics specific to genetics, genomics and synthetic biology pertaining to all living things, both human and non-human.
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
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.
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.
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).
Northwest Association for Biomedical Research - An Ethics Primer
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.
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.
Indigenous Perspectives and Gene Editing in Aotearoa New Zealand
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
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)
IndiGENEity: A New Model for Genetic Privacy
Blog post, Innovative Genomics Institute Blog, November 13, 2017.
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See in particular Cases of How Tribes are Relating to Genetics Research, a compilation of useful case studies by Dr. Náníbaa' Garrison.
Online Resources for Ethics in Genetics
These are several online portals to academic, legal and educational resources for exploring ethics in genetics and genomics.
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.
Stay up-to-date on the latest in genome science and ethics by subscribing to these expert blogs.
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.
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.
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.