Publications and information services
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AEGiS, a non-profit organization that is a web-based reference for HIV/AIDS information. AEGiS is a virtual HIV/AIDS library containing reference materials and late-breaking information from HIV/AIDS-specific publications and news sources from around the world. The site disseminates and archives information daily, offers e-communication lines, such as an Ask the Doc forum and documents pandemics via global historical database.
This HIV/AIDS web portal of the American Association for the Advancement of Science (publisher of Science) ceased operating in December 2003, but remains an important archive of documents relating to AIDS prevention, treatment and vaccine development. The International AIDS Vaccine Initiative
has taken over the role of reviewing and highlighting recently published scientific literature.
BioethicsWeb, an initiative of the Wellcome Trust, was launched in July 2003 and contains annotated links to hundreds of sites related to biomedical ethics. In addition to research ethics, topics covered include cloning, animal research, genetically modified foods, biotechnology, scientific misconduct and genetic testing. Categories of particular relevance to research ethics include "ethics: theory and concepts" and "research conduct". Much of the material on this extensive and useful site comes from Europe and North America, but material from developing countries is also linked to where available.
BioMed Central is an independent publishing house committed to providing immediate free access to peer reviewed biomedical research. This site provides links to BMC's articles on medical ethics, some of which relate to developing countries (prospective authors can submit their articles for peer review and publication). Other relevant journals on the site include BMC International Health and Human Rights and the International Journal for Equity in Health. One linked site
, provided by the West African Doctor's network, allows researchers in developing countries to conduct searches of PUBMED via email.
The US Department of Energy's genome site provides information about US involvement in the Human Genome Project (HGP). The website includes basic information about the HGP
, educational resources
and a section on Ethical, Legal and Social Issues
(ELSI), There is also information about the GTL
(formerly Genomes To Life) programme, which will explore practial applications of genomic information.
Family Health International — a non-profit organisation based in the United States — works to improve reproductive and family health around the world. They have put together a substantial research ethics training curriculum, which contains a discussion of basic prinicples and case studies. Once the curriculum has been completed (an estimated 4 hours) researchers have the opportunity to take at test and receive a certificate of completion. The online version of the curriculum is available in English
, and Spanish
This web portal was developed by the Bioethics Division of the Faculty of Health Sciences at Witwatersrand University, South Africa. Lack of funding means the site is no longer updated, although remains a comprehensive resource on HIV/AIDS, and ethics/law/policy in developing countries. The section on AIDS trials
contains information about guidelines, ethical concepts, drug availability, standards of care, vaccine research, ethics review, researcher and research participants. Other sections cover drug prices, resource allocation, healthcare professionals, communities, patients, research papers and legal issues. The site also contains daily news through links to articles about HIV/AIDS published in a range of periodicals.
This site provides free access to the full text of the journal of the Indian Forum for Medical Ethics Society. Over 30 issues of the journal are available on the website, from 1993 onwards. In addition to orginal articles, the journal contains discussion pieces, letters, book reviews, case studies, reviews and meeting reports, with special reference to developing countries. As well as articles discussing ethical concerns in medical research, the journal also contains articles on clinical practice and other issues in medical ethics. Topics of particular relevance include discussions of national and international research ethics guidelines, informed consent and the ethical review of research.
This site provides information about the role of the US National Institutes of Health in relation to bioethics. As well as a comprehensive library of links to general bioethics resources, this site has a useful set of links to resources in international research ethics
This site contains a bibliography of resources on ethical issues in research involving human participants. The 4,650 citations date from 1989 to 1998 and are arranged under subject headings including: minority and cross-cultural issues, informed consent, community consent, and institutional review boards and research ethics committees. In addition there is a list of resources on topics such as teaching bioethics and community consent
, and links to case studies and bioethics databases, as well as a comprehensive listing of guidance on research ethics. Although the site has an emphasis on American materials, and is now slightly out of date, it remains a useful background resource.
This useful reference site — run by Georgetown University, Washington DC — provides links to educational resources in bioethics and to other bioethics organisations and sites. It also contains an archive of the material published by the US National Bioethics Advisory Commision (which has now expired), including a report on clinical research in developing countries.
This University of Minnesota website provides information about the informed consent process for research and assistance in creating an informed consent document. Unusually, in addition to the training modules focusing on consent to health and biological research, a separate set of modules is provided for those conducting social and behavioural research. While the information provided is based on the US context, it is also an interesting resource for those conducting research in developing countries.