Bioethics Subject Guide - Part 2: Associations and Organizations

As in the previous post, the resources listed here provide useful, FREE, online resources for bioethics research. To find a longer list of relevant organizations (that may not be the best place to begin your bioethics information search), use one of the following resources:
International Bioethics Organizations Database at the National Reference Center for Bioethics
International Organizations – Bioethics Resources on the Web, NIH.
Global Ethics Observatory, Database 2: Ethics Institutions from UNESCO

Associations and Organizations

American Medical Association (AMA) Ethics Group
The activities of the AMA Ethics Group include:

Council on Ethical and Judicial Affairs (CEJA) – develops reports and policies which eventually become the basis for revisions to the AMA's Code of Medical Ethics.
Ethics Resource Center - provides educational tools, ethics news, and a useful repository of speciality medical association codes, see Federation Repository of Ethics Documents Online (FRED).
Institute for Ethics – conducts ethics research and training; including: the Ethical Force Progam; a list of recent and ongoing research projects; and fellowship opportunities.

Also see the AMA's Policy Finder (which includes, among other relevant policies, the Current Opinions of the Council on Ethical and Judicial Affairs) and the AMA's Virtual Mentor (an online journal of medical ethics with a long list of cases, polls and other resources).

American Society for Bioethics and Humanities (ASBH)
Although providing only a few resources, ASBH is an important association in the field of bioethics. The site provides information about recent and upcoming conferences, links to academic centers and journals, and an online job list. The association also publishes a useful, free guide to publishing bioethics articles: Publishing Without Perishing: A Handbook for Graduate and Professional Students on Publishing in Bioethics and the Medical Humanities [PDF].

The American Society of Law, Medicine & Ethics (ASLME)
ASLME publishes the Journal of Law, Medicine & Ethics (subscription required | PubMed Search: "J Law Med Ethics"[Journal]). Free resources on the site currently include many items relevant to DNA Fingerprinting and Civil Liberties and a page of links to "other law, medicine and ethics-related websites".

The American Association for the Advancement of Science (AAAS), Science and Public Policy Programs (SPP).
AAAS SPP includes a variety of programs that address the ethical, legal and social issues of science and research. Some of these programs publish reports and provide online guides to resources. See: AAAS Dialogue on Science, Ethics, and Religion, AAAS Scientific Freedom, Responsibility and Law Program (SFRL), and AAAS Science and Human Rights Program.

The Nuffield Council on Bioethics
Funded by The Nuffield Foundation, the Medical Research Council and The Wellcome Trust, the Nuffield Council on Bioethics forms working groups to address and anticipate the ethical issues resulting from the development of new medical technologies and research methods. The Council provides free access to electronic versions of many of its publications. Recent work groups have addressed:

• Public health
• The forensic use of bioinformation
• Critical care decisions in fetal and neonatal medicine
• Genetic screening
• The ethics of research involving animals

For these and others, see the complete list of the Council's publications.

PRIM&R - Public Responsibility in Medicine and Research
An organization for individuals working on institutional review boards and other ethical and regulatory programs, PRIM&R provides a few, free, online resources and many more items restricted to PRIM&R members. Free resources in the Resource Center include: abstracts from recent conferences; a list of articles (a few with links to full text); a white paper on biobanking; a job board; and a list of "Useful Links" covering the topics of:

• Animal Subjects
• Biosaftey
• Embryonic Stem Cell Research Oversight Committees (ESCROs) and Genetics
• Human Subjects
• International Research Ethics
• Research Ethics.

Also see PRIM&R's blog Ampersand for relevant news and discussions about research ethics and regulation.

President's Council on Bioethics
In addition to transcripts of its meetings, the Council provides links to electronic versions of all of its recent reports. The site also provides an archive of reports from prior bioethics commissions. Topics addressed include, among others:

• Aging and End-of-Life
• Cloning
• Genetics
• Nanotechnology
• Neuroethics
• Organ Transplantation
• Stem Cells

The Project for Scholarly Integrity (PSI)
An initiative of the Council of Graduate Schools (CGS), PSI promotes and facilitates responsible conduct of research and research ethics education. Supported by the Office of Research Integrity (ORI), PSI hosts a long list of online resources on scientific misconduct and research integrity. Browse the list by topic or use the search function. This online resource guide includes content originally hosted by The American Association for the Advancement of Science (AAAS), AAAS-National Academies Compilation of Resources on Scientific Misconduct and Research Integrity.

UNESCO Social and Human Sciences: Ethics
The UNESCO SHS Ethics portal is organized by theme. Select Bioethics and Publications for a broad list of relevant publications available to download. Also see UNESCO’s international standards and declarations, including: Universal Declaration on the Human Genome and Human Rights (1997), International Declaration on Human Genetic Data (2003), and Universal Declaration on Bioethics and Human Rights (2005).

The World Medical Association (WMA)
In addition to the Helsinki Declaration, the WMA publishes an ethics manual, a handbook of WMA policy declarations (browse alphabetically or by topic), The World Medical Journal, and other outcomes of its international focus on ethics and human rights.

The World Health Organization (WHO)
Although many WHO programs publish resources and data relevant to the ethical issues in world health and international research, browse the four teams for the program for Ethics, Trade, Human Rights and Health Law (ETH):

• Ethics and Health
• Globalization, Trade and Health
• Health and human rights
• Health law

Alternatively, to keyword search all WHO publications, select the "Search WHO publications" option on the Advanced Search page.

[Updated June 8, 2009]

Bioethics Subject Guide: Part 1 - Academic Centers

My job keeps me busy (see the infrequent posts on this blog) and my library services are integrated with grant-funded bioethics research projects. It’s usually interesting work and I’m not marginalized as a librarian, so I can’t complain. Nevertheless, some of the traditional library service activities seem to fall to the bottom of my "to do" list. One of these is creating and maintaining subject guides for bioethics research. I’m working on some of these now (because I said I would in a grant), but it’s a piecemeal process. Here’s part one of a guide to "free" online resources for people that may be unfamiliar with the basics of bioethics. To simplify my own work flow, I’ve divided the content into types. So, I'm beginning with academic centers. The point is not to index all (or even the best) centers for bioethics, but rather, to point to those that provide useful resources to anyone with internet access. If, however, you are looking for an index of academic bioethics centers, try one of these:

• Academic Centers and Programs from Bioethics Resources on the Web – National Institutes of Health
• Bioethics Centers and Institutions from bioethics.net
• Global Ethics Observatory (GEObs) – Database 2: Ethics Institutions from UNESCO Social and Human Sciences - Ethics
• The International Bioethics Organizations Database (mentioned below) from NRCBL

Here is my lightly annotated list of favorite academic centers that provide free bioethics information resources. Most of my patrons are in the States; you will notice, therefore, an absence of ethics centers from other countries. I know of a few good ones, but I didn't add them ... I thought I'd add them to an International Bioethics guide in the future, but perhaps I should change my mind. At any rate, if you know of a center or bioethics department that provides similar access to basic bioethics materials, please let me know.

Academic Centers

- Hastings Center

The Hastings Center (a bioethics research institute) publishes two widely read bioethics journals (subscriptions required, with some free content) The Hastings Center Report and IRB: Ethics & Human Research. In addition to these subscription-only resources, the Center provides free access to its Bioethics Briefing Book (a 36 chapter overview of many ethical issues and topics, including assisted reproduction, end of life issues, enhancement, and stem cells). Also see the blog, Bioethics Forum, and the free Special Reports.

- Johns Hopkins Berman Institute of Bioethics

In addition to electronic newsletters, The Berman Institute Media Center provides online access to audio, video, and slide shows from several lectures on ethics topics. Also, see links to various research projects and programs and their associated guides to topics, including: genetics, stem cells, and neuroethics.

- The National Reference Center for Bioethics Literature (NRCBL)

The library service of the Kennedy Institute of Ethics (KIE) at Georgetown University, NRCBL maintains the "world's largest collection" of material on the bioethics issues. NRCBL's online services include custom literature searches by email and access to databases:

• ETHXWeb - the NRCBL collection
• GenETHX - literature on the ethics of genetics
• International Bioethics Organizations Database
• Syllabus Exchange Database - syllabi from high school, college, and graduate bioethics courses

Also see the NRCBL's Bibliographies, which include: QuickBibs (a way to keyword browse the recent additions to the NRCBL databases), Scope Notes (42 comprehensive bibliographies of various ethical issues) and bibliographies created for special courses and events.

The NRCBL also maintains the National Information Resource on Ethcis & Human Genetics and edits the Bioethics Subset (a subject search strategy) for the PubMed database.

- University of Minnesota Center for Bioethics

This center provides free PDF downloads from its Summaries and Overviews page. Summaries are brief descriptions of common bioethics topics (including, for example: Advance Directives, Chimeras, and Research on Animals). Overviews offer an "in-depth" assessment of bioethics topics and extensive bibliographies. Currently, the following overviews are available:

• End of Life Care: An Ethical Overview
• Distributing Limited Healthcare Resources
• Ethics of Organ Transplantation
• Human Stem Cells: An Ethical Overview
• New Frontiers in Genetic Testing & Screening
• Research Ethics
• Resuscitation Decisions

- University of Pennsylvania Center for Bioethics

Although the Center's website does not provide direct links to resources, many of the articles written by its faculty are available in the institutional repository: ScholarlyCommons@Penn - Bioethics. Papers can be browsed by date or searched by keyword. Also see the Center's subject specific websites, the following include topical overviews and bibliographies:

• Ethics of Nano-Science and Technology
• Neuroethics.upenn.edu
• Neuroethics: Resources for Secondary Educators
• VaccineEthics.org

Bioethics Journals: 88% Obscure

A Twitter friend, "orgmonkey", recently sent me a link to a post on the openness of ethics journals. Jim Till, of Be openly accessible or be obscure, examines the open access policies and the frequency of "free full text" (FFT) publication in leading bioethics journals. In "Assessing medical ethics journals", Till uses three, free, online tools to build his lists of highly ranked ethics journals: eigenFACTOR.org, Journal-Ranking.com, and SCImago Journal & Country Rank. Thereby avoiding the standard (but not "open") tool for this sort of research—Thomson Reuters' Citation Indexes and Journal Citation Reports. Till's method identified seven, top-ranked titles, publishing a total of 1,472 articles in two years, and providing FFT (as indicated by PubMed) to 181 articles. (Note, however, that 178 of these FFT articles were published in one journal, BMJ's Journal of Medical Ethics.) Which means that Till's "leading" bioethics journals are about 12% open (181/1472) - or, to borrow a term from the title of Till's blog, 88% (1291/1472) "obscure". In contrast, a similar analysis by Till of immunology journals found that the three top-ranked titles of the field were about 41% open (274/672)—see: "Assessing immunology journals", 16 April 2008.

If Till's analysis is correct and bioethics journals are comparatively "obscure", his post opens the door to three questions:

1. Why are bioethics journals "obscure"?
2. Should ethicists, editors, readers and publishers do anything about this obscurity?
3. If so, what should or could be done to encourage an increase in open access publication of ethics literature?

I have a few ideas on the first question, an opinion on the second, and (thus far) not much to offer on the third. However, if I find the time to share, rest assured that my thoughts here are always "open" and hopefully "accessible".

Who Needs "Gray Literature"?

Bioethics readers and writers may be among some of the biggest consumers of gray literature. The consumption and production of gray literature in bioethics will never equal the pace set by scientists employed by large governmental agencies like NASA, but the advisory and consultative nature of the discipline lends itself to the "gray" pages. Ethics commissions and committees are often international, non-governmental, semi-governmental, interdisciplinary, and (of course) not-for-profit. Given these circumstances, and the general value to be found in making ethical guidelines and reports broadly available, many of these documents will be published in ways that are not easily indexed or discovered.

While ethics researchers can find some of this literature with careful internet search engine strategies, searching the wide open Web may not be the most efficient way to browse and to discover new "gray" bioethics publications. Although Brian S. Matthews (C&RL News, March 2004, Vol. 65, No. 3) provides a long, useful list, for finding gray literature, few of these are likely to include bioethics material. I did, however, recently use one of these, The New York Academy of Medicine Grey Literature Report, to find a "gray" publication on the ethical issues relevant to pandemic influenza preparedness - The Eleventh Futures Forum [PDF - 515 KB] - a recent publication of the WHO.

The NYAM Grey Literature Report appears to be a useful tool, but will I remember to use it in the future? I guess one thing that worries me about search tools specifically devoted to "gray literature" is the concept itself. Who thinks to themselves while researching, "I need to check the 'gray literature'"? In short, the concept serves librarians, publishers, and (perhaps) tenure committees well. Those who evaluate publications, index titles, or build collections will find that segregating documents into a "gray" pile is, from time-to-time, a necessity. Others, however, are likely to find this material (if they know what they are looking for) without thinking about the "gray" status of the literature.

Finding a Brief Introduction to Bioethics

If a recent reference request from a curriculum development friend is indicative of the state of medical education, students are demanding quick fixes. It seems that medical students are busy people (no surprise) and for better or for worse (no, just "for worse"), they're just not ready to sit down and read a thorough, tried-and-true introduction to principles of bioethics. Although the demands of the market (money and time) probably do much to erode the ethical foundations of even the most conscientious medical professional, I believe these foundations would be a good bit stiffer if all were required to read and discuss Beauchamp and Childress's Principles of biomedical ethics (New York: OUP, 2001) or Veatch's The basics of bioethics (Upper Saddle River, N.J.: Prentice Hall, 2003).

So, what is one to do? Can one provide a good introduction to biomedical ethics in less than 10 pages? Let's be honest ... many students will merely give themselves a crash course by perusing Wikipedia. Which means, if there's a good brief introduction to bioethics available online, it must be at least as easy to access and to read as are Wikipedia's entries on bioethics and medical ethics.

I should note here that, although faculty will be reluctant to use Wikipedia, the page on medical ethics is not bad. In fact, it's more thorough than many of the popular Web pages written by bioethicists as introductions to the field. Too often these introductions focus on the latest hot topic (e.g., stem cell research) or the great scandals of medical research (e.g., Tuskegee), without sharing the philosophical underpinnings that inform contemporary ethical scrutiny and decision making. The Wiki entry provides a few sentences for the main principles and a paragraph for some of the key tools and concepts, like "informed consent". Links to many of the hot topics and events in the history of medical ethics are also provided.

As an alternative to the Wikipedia entry, I recommend Thomas R. McCormick's "Bioethics Tools: Principles of Bioethics". This page is a part of a module created and maintained by the The Bioethics Education Project at the Department of Medical History & Ethics at the University of Washington School of Medicine. The page provides the most succinct and well-written summary of Beauchamp and Childress that I have seen online. (If someone knows of something better, please let me know.) The page was created in the late 90s and the web design certainly looks dated, but links are provided to case studies and to additional resources and topics covered by the entire Ethics in Medicine website [site map]. This resource isn't perfect: oddly the site does have a home page, but once you're inside the site, it's hard to find your way back ... well-written content, poor design. Also, it appears that the site was written with the University of Washington School of Medicine students foremost in mind. While this doesn't change the value of the material, it does limit the appeal for non-UW readers. The Bioethics Education Project was built with the support of an award from the Robert Wood Johnson Foundation. So, like many innovative programs in bioethics, its future development will probably need added grant support. Nevertheless, if you're looking for a good online introduction to bioethics, the University of Washington School of Medicine's Ethics is Medicine is my current favorite ... and, if the good folks at the RWJF are reading, please consider revisiting this project.

Subject Guide Collaboration?

While skimming through a few of the blogs that I follow, I discovered that I wasn't the only person to read (with interest and, in my case, plans) Edward M. Corrado and Kathryn A. Frederick's "Free and Open Source Options for Creating Database-Driven Subject Guides" (The Code4Lib Journal, Issue 2, 2008-03-240). Among others, including those leaving excellent comments on her blog, Sarah Houghton-Jan of LibrarianInBlack.net uses the article as a launch pad to discuss the potential for shared library subject guides. She writes:

Does anyone else see value in trying to combine our efforts to create subject guides, or are all of our users really that different from each other that we need to create these individually? We are all a lot more alike than different, and in times of tough budgets I'd like to think we could help each other here...or perhaps even have a grant-funded project to tackle this issue.

Sarah's right; there are plenty of reasons to collaborate on the creation of library subject guides. I suspect that most editors rely heavily on their favorite existing guides anyway. I wonder, however, if the competitive climate of online library services makes collaboration less likely today than it might have been in the past. Sure, we have new tools that would allow us to collaboratively edit these guides (the database driven solutions in the Code4Lib article, for example), but libraries want users to find their Web sites, to associate useful information with the brand, and return to the library's pages in the future. If a third-party site provides access to library guides co-edited by multiple libraries ... why not skip the library site and just go to the third-party.

In my case, the collaborative venture would also suffer from the narrowness of the library's collection and mission - bioethics. While there are collaborative efforts afoot in ethics librarianship - EthicShare, for example, at the University of Minnesota - few people ever think to themselves ... "I need to find a bioethics library". Likewise, there are few bioethics libraries to find ... of those with Web sites, The National Reference Center for Bioethics Literature (NRCBL) predominates. As with any library, other online sources also provide a wealth of information. Why build a dinky subject guide on "end-of-life issues", for example, when the NIH's Bioethics Resources on the Web practically corners a narrow market? On the other hand, why would the NIH's Bioethics Interest Group or the NRCBL want to collaborate with less-established bioethics information resources? The NRCBL is THE library on the Web for bioethics information, why would they want to share that hard-earned bit of real estate in the very tight market for ethics library patrons?

Though the market is tight, I'm, nevertheless, all for sharing (with attribution) and would be flattered if someone asked to copy our library's guides or adapt our guides for their site ... so, I guess I'd be equally flattered to participate in and contribute to a shared bioethics subject guide. Of course the additional work would have to be minimal and someone would have to monitor quality control, but it's still a good idea.

Privacy Risks - Social Bookmarking on a Medical Library Website?

If you have been following me on Twitter, you know that I've been thinking a lot about the privacy risks of using social networking tools. Of course, if you've been following me on Twitter, I doubt that you have too many concerns about your own privacy risks when using these tools. And, if I were truly concerned about my own risks, I wouldn't use them either; in fact I wouldn't write this blog post. So, why do I care. Well, it's not my risks that I'm worried about, but the library users' risks that concern me. I am working on an academic website that will allow users to create profiles and share their interests ... especially their interests in medicine. While the site will mainly be used by researchers, it will also be used by the community. Therefore, an unsuspecting community member could misinterpret the option to share interests as a place to list one's medical conditions. If this individual also created a profile that was easily identifiable ... a photo, a simple user name ... then that person's private medical information could be disclosed to employers, insurers, friends, colleagues, law enforcement, marketers, and anyone else that might used the site and recognize the person.

One solution would be to make it painfully clear to participants that they, by using the site, are exposing themselves to risks ... but what are these risks, exactly? And how does one best communicate them to patrons, patients, researchers, and the any other person that might use the networking service?