Bioethics
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- Special Topics
Find information about bioethics and related subjects.
Special Topics
ELSIhub was created "to provide you with scholarship, educational content, webinars, community news, and resources focused on the ethical, legal, and social implications (ELSI) of genetics and genomics. We conduct ongoing assessments and respond to the needs of members of the ELSI community and beyond.
- Very helpful 6-minute tour of the site (scroll down) -- you should definitely listen to it before hunting around the site.
- In the video, you will hear the word "CERA," which stands for Center for ELSI Resources and Analysis. This group is managed by "a team of staff in the Stanford Center for Biomedical Ethics at Stanford University and the Division of Ethics in the Department of Medical Humanities and Ethics at Columbia University."
- The video explains what each of the headings (shown above) contains. Most of the site's content is under Resources, and includes ELSI hub Collections, which are "essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information." The collections include:
-- How Do We Diversity Human Genomics Research?
-- Human Gene Editing and the Ethics of Enhancement
-- Genetics Toolkit: Preventing Misuse of Genetic Science
-- Addressing Algorithmic Unfairness in Healthcare
The Meaning of Eugenics: Historical and Present-Day Discussions of Eugenics and Scientific Racism
National Human Genome Research Institute (NHGRI) Symposium, December 2021
Image Archive on the American Eugenics Movement
- Contains more than 2200 photographs, documents, and other images showing this era in America's past. The archive is one of the collections maintained by Cold Spring Harbor, which was the site of the Eugenics Records Office from 1910 to 1940.
Sterilization and Social Justice Lab (U. Michigan)
- "Studying the history of sterilization in the U.S. Team includes historians, epidemiologists, and digital humanists. We explore patterns and experiences of eugenics and sterilization... We connect this history to reproductive, disability, and racial justice, as we reflect on the relevance of the past to social justice today."
Human Genome Project (HGP)
When the U.S. Government began the HGP, the Department of Energy (DOE) and the National Institutes of Health (NIH) devoted 3-5% of their annual HGP budgets to study the ethical, legal, and social issues (ELSI) about genetic information.
- Ethical, Legal and Social Implications (ELSI) Research Program -- This program is led by the National Human Genome Research Institute at NIH. At the top of the page under "About Genomics" is "Policy Issues in Genomics," which includes genetic discrimination, health disparities, gene editing, and others.
- Human Genome Project Information Archive, 1990-2003 -- The U.S. Department of Energy (DoE) also managed part of the Human Genome Project. Mouse over the tabs at the top for information about the project, the research, publications, and more.
- The Robert Cook-Deegan Human Genome Archive -- This archive is "founded on the bibliography of Dr. Cook-Deegan's book entitled The Gene Wars: Science, Politics, and the Human Genome (1994). ...In addition, complete transcripts and selected audio recordings from sixteen interviews...conducted by Dr. Cook-Deegan provide a unique oral history and diverse perspectives on the issues around the project."
- ProQuest Dissertations and Theses lists ~480 dissertations and theses which include the phrase "human genome project" in their abstracts.
In alphabetical order.
More information under Oaths and Codes on this guide.
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American Society of Human Genetics Statement on Direct-to-Consumer Genetic Testing
Am J Hum Genet. 2007 Sep; 81(3): 635–637 -
Genetic Information Nondiscrimination Act of 2008 (GINA) (PDF)
--- Background, from National Human Genome Research Institute (NHGRI) -
Guideline on Infectious Disease Issues in Xenotransplantation--- Food and Drug Administration (FDA; January 2001)
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Guidelines for Human Embryonic Stem Cell Research (free PDF)--- Committee on Guidelines for Human Embryonic Stem Cell Research, National Research Council (2005)
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International Ethical Guidelines for Health-related Research Involving Human, 2016 (free PDF)--- Council for International Organizations of Medical Sciences (CIOMS), in collaboration with World Health Organization (WHO)
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National Institutes of Health (NIH) Guidelines on Human Stem Cell Research--- Scroll down for guidelines
--- FAQs -
National Organ Transplant Act (NOTA; 1984)--- Title 42—The PUBLIC HEALTH AND WELFARE --> CHAPTER 6A—Public Health Service --> SUBCHAPTER II: General Powers and Duties --> Part H: Organ Transplants (short title: "National Organ Transplant Act")
--- This law also established the Organ Procurement and Transplantation Network (here is background information) -
Removing Barriers to Responsible Scientific Research Involving Human Stem Cells--- Executive Order 13505 of March 9, 2009
- United Nations: Ad Hoc Committee on an International Convention against the Reproductive Cloning of Human Beings (2002)
--- News from the UN (March 2005)
(Thank you to Pace Law Library Guide)
Office of Technology Assessment Reports
- Between 1972 and 1995, the Office of Technology Assessment "provided Congressional members and committees with objective and authoritative analysis of the complex scientific and technical issues of the late 20th century."
- You can search these reports by title, year, or topic
The Bioethics Research Library at Georgetown University's Kennedy Institute of Ethics is "home to the world’s largest and most diverse collection of materials on the ethics of health, the environment, and emerging technologies."
The library maintains archives of the national committees to advise the U.S. government about bioethical issues which existed intermittently from 1974 through 2017.
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Here is the list of those groups, with links to their archival sites
- The last of these was the Presidential Commission for the Study of Bioethical Issues, which "advises the President on bioethical issues that may emerge from advances in biomedicine and related areas of science and technology."
- "As of January 15th, 2017, this website will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues."
The library also maintains archives of other groups, including the National Heart Transplantation Study (1981-1984), Human Fetal Tissue Transplantation Research Panel (1988), and Human Embryo Research Panel (1994). The complete list is here.