Ethical issues surrounding genetics continue to be a focus of the Bioethics Research Library. The Library is grateful for support of the National Human Genome Research Institute (NIH) and its predecessor from 1994 to 2011. The assets of that long-term project, the National Information Resource on Ethics and Human Genetics, continue to be available to researchers at the BRL.
Below are featured resources on topics related to the ethical, legal and social implications of genetics research and practice. These include specialized databases searchable via the Internet, the full text ofonline annotated bibliographies and other print publications, syllabi featuring genetics issues, and organizations working in this area.
Genetics Websites of High Quality and General Interest
(updated October 2012, from Beth Peshkin’s Contemporary Issues in Genetics and Society Syllabus)
- Center for Genetics and Society
- The Council for Responsible Genetics
- Genetic Alliance
- Genetic Health
- Genetics and Public Policy Center
- Genomes Unzipped: Public Personal Genomics
- Genomics Law Report
- March of Dimes – Resource Center
- National Human Genome Research Institute (NHGRI)
- GenETHX Blog — Scans bibliographical resources, portals and databases on the ethics and bioethics of genetic research arising from the Human Genome Project.
- Bioethics Thesaurus for Genetics — Controlled vocabulary for genetics used in creating tag cloud for the GenETHX Blog.
- DNA Patents—a collection of DNA-based patent applications and patents issued by the U. S. Patent and Trademark Office.
- Organizations—Resources and programs of over 100 organizations. Many offer degree programs in bioethics.
- Syllabus Collection—a collection containing over 100 online syllabi relating to ethics and genetics and ranging from high school through graduate education.
- Digital Collections—selected monographs about ethics of genetics research and clinical practice, including reports of governmental bodies and historical documents on eugenics.
- Annotated Scope Notes—annotated bibliographies presenting an overview of issues and viewpoints related to specific topics.
- QuickBibs—links to bibliographic citations for the 100 most recently published items in our databases.
- Custom Searches—Request a custom bibliography prepared by our experienced reference librarians.
The following Scope Notes from the full Scope Note Series focus on topics in genetics. These Scope Notes are routinely updated by Bioethics Research Library Staff.
Human Gene Transfer Researchhas a 5-page history along with a discussion of the pros and cons of such therapy. Its annotated bibliography looks at philosophical aspects, regulation and public policy, and religious writing in the area.
Genetic Testing and Genetic Screening lists and annotates documents from the government, statements from national organizations, books, special issues, and journals focusing on material about prenatal diagnosis, newborn screening, carrier screening, forensic screening and susceptibility screening.
Eugenics offers a brief essay about the movement and includes an annotated bibliography of books and articles discussing the historic beginnings, the Nazi eugenic era, and current concerns whether genetic intervention creates a new eugenics.
The Human Genome Project provides historical background on the ethical, legal and social aspects of the ongoing mapping of the human genome. Its bibliography cites proponents and critics, surveys, international discussion, approaches, and position statements.
Genes, Patents, and Bioethics — Will History Repeat Itself? provides background and historical information on genes and patenting and includes a bibliography of books, laws, and articles relating to ethical, legal, and social issues related to the patenting of genetic materials.
Bioethics Resources on the Web offers an overview of general bioethics information available via the Internet, including bioethics directories, electronic journals, full-text documents, news and current awareness resources, and teaching resources. The bibliography then concentrates on electronic resources for ethics and genetics within these same categories. Last updated in 2009.