Overview
The focus of my course is much more upon medical ethics than bioethics. The distinction is not always observed, but when it is, bioethics usually denotes "the study of ethical issues arising in the practice of the biological disciplines," including all the health care professions (e.g., medicine, nursing, veterinary medicine) and the biological sciences, such as environmental ethics and "various sociopolitical moral issues, including the adverse effects on people's health of unemployment, poverty, unjust discrimination, crime, war, and torture" (Raanan Gillon, "Bioethics Overview," in 1 Encyclopedia of Applied Ethics (Academic Press, 1998, Ruth Chadwick, ed.). The Web resources that follow are mostly concerned with medical ethics.
Another way to view medical ethics is as a subset of medical humanities, including medicine and the arts (e.g., medicine and music, literature and medicine), medicine and history, health care economics, medical anthropology and sociology, and the like. I have collected some of the literature-related web materials on my Law, Literature & Medicine/Web Resources page, and I invite you to visit that page, as well. If research on a bioethics topic leads you to health- or health-law-related topics, try my Health Care Law/Web Resources page. If all you need is to find a bioethics statute or regulation (state or federal), go to my Law/Web Resources page.
My goal has been to create a short and useful list of links that will, within a click or two of where you are right now, lead you to most of the important and resource-rich sites on the Web.
I. Starting points
A. Generic research resources
- Google and Yahoo! -- Although a links page like the one you're reading right now can be useful, I usually start my Web searches with a visit to Google or Yahoo! They are easy to search, and the results are often extraordinarily good. See also search engines on my Search page and a longer list on my WWW Links page.
- "Librarians' Internet Index" -- If Google and Yahoo! don't yield the results you are looking for, try this site from the Berkeley Public Library. It has a wonderful collection of very carefully selected sites on every Health & Medicine topic, including a good "Best of Health & Medicine" page.
- A good all-purpose search engine for legal materials (state and federal; judicial, legislative, and regulatory) is maintained by Georgia State University's School of Law. Other law-search sites include FindLaw and "Law Library on the Net."
B. Bioethics starting points
- Bioethics news: bioethics.net; MSNBC Breaking Bioethics Front Page
- Google's bioethics page
- National Institutes of Health - Bioethics Resources on the Web: excellent collection of links, organized in a straightforward and intuitive manner, simple to navigate; my favorite place to start Web research in this field
- BioethicsWeb (from the Wellcome Trust)
- Kennedy Institute of Ethics (Georgetown University) -- National Reference Center for Bioethics Literature -- Basic Resources in Bioethics. See also the home page for the Kennedy Institute of Ethics Journal.
- Applied Ethics Resources on the Web
- American Journal of Bioethics' News Archive
- New England Journal of Medicine's Medical Ethics Collection
- Emory University Health Science Center's "MedWeb" has a great collection of bioethics-related links.
- Similarly, see MedWebPlus' extensive listing.
- The AMA has put its "Current Opinions of the Council on Ethical and Judicial Affairs" on its website and has expanded its CEJA page, which now includes copies of most CEJA Reports; also click here for new Opinions and CEJA reports adopted since the publication of the 2002-2003 Code of Medical Ethics.
- The AMA's STEP program (Strategies for Teaching and Evaluating Professionalism) - a partnership with 10 North American medical schools - is described here. Not much of substance here, yet, but stay tuned; it could get interesting.
- The American College of Physicians-American Society of Internal Medicine web site includes an on-line version of their valuable Ethics Manual (4th ed. 1998).
- As primers go, this is one of the best on-line - The Canadian Medical Association Journal's series, "Bioethics for Clinicians".
- University of Toronto has its entire undergraduate medical school ethics curriculum on the WWW.
- The UK's General Medical Council has a great "Ethical Guidance" page (including Good Medical Practice)
- SCIRUS (excellent science-oriented search engine from Reed Elsevier)
- For recent news stories involving bioethical issues, try Bioethics.net's "Recent News" feature on their homepage.
- University of Pennsylvania's Center for Bioethics has a very evolved Web site, with materials for "bioethics beginners," a very nicely indexed collection of web sites and articles by Center faculty, and dedicated pages on cloning law and policy, ethics and genetics, and physician-assisted suicide - The American Journal of Bioethics seems to be just another name for the same site.
- Albert Jonsen's website for the Department of Medical History and Ethics has some good stuff. Don't miss the excellent "Bioethics Topics" page, which has some useful discussions, including case studies. See also University of Washington Medical School's "Ethics in Medicine" web site.
- Biomedical Ethics: Newsletter of the European Network for Biomedical Ethics has all of its issues on-line in full-text.
- Yahoo! has added a Biomedical Ethics page.
- Medical College of Wisconsin has a good collection of materials (some primary, some links) at their "Bioethics Resources for Meeting JCAHO Requirements" page. Their general bioethics resource page is good, too.
- Medical College of Georgia has a two-year program: Phase I and Phase II - looks pretty good.
- Stony Brook Univ. has a good first-year or second-year program, with case studies
- Also check out the University of Minnesota's Center for Bioethics. They have a particularly good collection of educational resources on their publications page. See also the biweekly essays by Jeffrey Kahn, the director of the Center, on the CNN webpage.
- Health Hippo has an interesting collection of materials and links -- always worth a visit.
- Though not particularly research-oriented, the AMA's "Virtual Mentor" page is an interactive, Web-based forum for analysis and discussion of clinical and professional issues that medical students encounter during their educational training. The Virtual Mentor content areas are designed to inform, awaken, and energize students to engage in a learning dialogue with experts in medicine, law, and bioethics." See also:
- UT-Southwestern's Interactive Ethics page;
- Maurice Bernstein's "Bioethics Discussion Pages" -- an eclectic assortment of essays and interactive discussions on a wide variety of topics; often thought-provoking, it's not so much a research resource ('though there is some of that) as it is a well-organized town hall meeting.
- A Shared Statement of Ethical Principles for Those Who Shape and Give Health Care: A Working Draft from the Tavistock Group, Annals of Internal Medicine, 19 January 1999. 130:143-147
- Roger Rigterink's listing of on-line bioethics readings
- Stanford's Encyclopedia of Philosophy has a number of entries on relevant topics. See also noesis: Philosophical Research On-line & Internet Encyclopedia of Philosophy
- Bioethics increasingly overlaps -- in scope of application if not more -- with business ethics. As to the latter, here's a good place to start.
- Ethics Resource Center
II. Research sources by topic
A. Abortion
- Abortion Access: All Sides of the Issue
- Center for Reproductive Law and Policy -- excellent collection of federal , state, and international materials
- Alan Guttmacher Institute, Monthly update of State Policies in Brief | Also: custom table-maker & articles on-line
- See also the Kaiser Family Foundation's Daily Reproductive Health Report.
- Yahoo! has a good list, too
- A good collection of fact sheets and Web sites is maintained by NARAL Pro-Choice California.
- International Planned Parenthood Federation: excellent collection of resources.
- U.S. FDA's mifepristone (RU-486) information page
- Texas Supreme Court's Parental Notification Rules and Forms
B. Animal ethics
- American Veterinary Medicine Association's (AVMA's) Code of Ethics | 2000 Report of the AMVA Panel on Euthanasia (PDF)
- American Psychological Association's Guidelines for Ethical Conduct in the Care and Use of Animals
- National Academies' list of resources regarding animal welfare and ethics
- Tufts Center for Animals and Public Policy's Legislative Resources for Animal Law
- Ethics of Using Animals in Research (Stephanie J. Bird, Ph.D.): includes good links
- The Moral Status of Animals (part of Lawrence Hinman's ethics updates)
- Google Directory: Animal Welfare/Animal Rights
- Peter Singer Links page | Peter Singer in the N.Y. Review of Books
- Animal Legal and Historical Center - Michigan State Univ./DCL School of Law
C. Death and dying
1. Generic WWW coverage
- About.com has a good collection
- Yahoo!
- Yahoo! also has good news coverage of assisted suicide and other "right-to-die" developments
2. Brain death & PVS
-
American Academy of Neurology practice guidelines: Brain death (PDF)
- NEJM brain death review article (requires registration)
- Braindeath.org
- International Network For the Definition of Death -- good links, some on-line documents.
- American Academy of Neurology practice guidelines: Persistent vegetative state (PDF)
- National Institute of Neurological Disorders and Stroke: Coma (and PVS) Information Page
- David Chalmers' pages are a good place to start exploring the intersection of philosophy, physics, and neuroscience, especially the papers on consciousness.
- Ethical aspects of PVS are usefully summarized in the Lancet, 2001;322:352-354
- European Court of Human Rights: Pretty v. The United Kingdom (April 29, 2002)
3. Advance directives (and related end-of-life issues), including state-specific forms
- Compassion & Choices (Compassion in Dying Federation) (End-of-Life Choices)
- ABA Commission on Law and Aging -- ABA Advance Directives Toolkit
- National Hospice and Palliative Care Organization's advance directives page
- Caring Connections (National Hospice and Palliative Care Org.’s consumer outreach initiative): http://www.caringinfo.org
- Terri Schiavo's case: timeline and key documents (from Steven Haidar & Kathy Cerminara)
- Institute of Medicine, Committee on Care at the End of Life, Approaching Death: Improving Care at the End of Life (1997) - invaluable resource
- NIH: State-of-the-Science Conference on Improving End-of-Life Care (Feb. 2005)
- NIH: "Symptoms in Terminal Illness: A Research Workshop" (22-23 September 1997) produced some very useful reports, available in full-text.
- Consensus statement of 11 medical associations re: "Principles for Care of Patients at the End of Life"
- University of San Diego's Euthanasia and End-of-Life Decisions website - video-streaming lectures by Dan Callahan, Tom Beauchamp, Larry Schneiderman, Sue Rubin, Lawrence Hinman, Rita Marker; massive collection of web links
- Americans for Better Care of the Dying: see esp. News and Shaping Public Policy
- AMA's advance directives page
- Project on Death in America (Open Society Institute - a Soros Foundations Network)
- University of Pennsylvania's Center for Bioethics
- University of Toronto's Joint Centre for Bioethics
- NPR's series, "The End of Life," is a wealth of materials. Not to be missed are the hundreds of listeners' stories about death and dying. A unique resource.
- Bill Moyers' PBS special, "On Our Own Terms"; includes resource page
- Michael Lutzky's "A Matter of Life and Death": the story of John Graham's death from cancer and the debate over the "Rights of the Terminally Ill Act" in Australia's Northern Territory, in video and audio/text formats
- "Before I Die" -- program materials and resources for the PBS program that originally aired on April 22, 1997.
- International Task Force on Euthanasia and Assisted Suicide (formerly the International Anti-Euthanasia Home Page)
- New York State Task Force on Life and the Law -- full-text version of "When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context" (1994) and the 1997 Supplement.
- Another New York resource: Family Decisions Coalition, a group that works to reform the state's restrictive stance on substituted- judgment decision making; the site includes background discussions and full opinions from the Eichner/Storar and O'Connor cases
- Hospice Foundation of America
- Stanford Encyclopedia of Philosophy, Voluntary Euthanasia
- Brown Univ. Atlas of Dying
- Religion & Ethics: Euthanasia (BBC)
4. Physician-assisted suicide
- U.S. Supreme Court materials (opinions in Washington v. Gluckberg and Vacco v. Quill; lower-court and state materials from Washington, Oregon, and the Ninth and Second Circuits; briefs of the parties and many amici).
- See also University of Pennsylvania's collection of amicus briefs (click on "assisted suicide" in the left-side menu).
- Also, Yahoo! does a pretty good job of updating its "Assisted Suicide & Euthanasia" section.
- The Oregon experience: Oregon's Department of Human Resources' Oregon Health Division (OHD) has a Physician-Assisted Suicide page, including links to their annual reports. The main page also has links to the compliance forms, statute, and OHD regulations.
5. Palliative care and pain relief
- Pain Relief Promotion Act of 2000: H.R. 2260/S. 1272 (106th Cong.); Google search results
- Pain management and the law - from St. Louis University & ASLME
- National Hospice and Palliative Care Organization
6. Do-Not-Resuscitate (DNR) orders
- VA's DNR policy
- Excellent educational site for DNRs (University of Washington)
- Good discussion of CPR Policy at Mercer
- Cleveland Clinic's DNR protocol
- Texas Out-of-Hospital DNR Guidelines
- NY Department of Health: Deciding about CPR: Do-Not-Resuscitate (DNR) Orders -- A Guide for Patients and Families
- Merck Manual, Second Home Edition: DNR Orders
- American Family Physician: practical guidelines for DNR orders
- Answers.com/Wikipedia
- Pediatrics: DNR Orders for Pediatric Patients Who Require Anesthesia and Surgery
7. Miscellaneous
- Check your own "death clock" (countdown timer) here.
- Obituary resources: Daily Telegraph | N.Y. Times | Washington Post | ObitPage.com
- Guide to cemetery iconography
C. Ethics codes
(see also: Section III, below (my list of ethics resources by medical specialty)
- IIT's Center for the Study of Ethics in the Professions: Index of Codes
- University of Adelaide Library: Codes of Professional Ethics and Statements of Human Rights
- UT-Southwestern's Code of Ethics Resources
D. Presidential Commissions
1. President's Council on Bioethics (2001-)
- Executive Order 13237 (Nov. 28, 2001) (Fed. Reg. (PDF))
- Working papers etc.
- Reports and White Papers
2. National Bioethics Advisory Commission (1995-2001)
- Executive Order 12975 ((Oct. 3, 1995) (Fed. Reg. (PDF))
- Amendment/reauthorization, EO 13137, (Sep. 15, 1999) (Fed. Reg. (PDF))
- Charter
- Reports
3. The Advisory Committee on Human Radiation Experiments
- Final report, interim report, and archival materials are available through the National Security Archives web site.
- Dep't of Energy/Office of Human Radiation Experiments - good Web site
E. Genetics
1. General
- DNA Learning Center (from Cold Spring Harbor Laboratory)
- A glossary and primer in human genetics (from the DOE Office of Biological and Environmental Research, Human Genome Project Information office)
- From NIH's National Human Genome Research Initiative, a multimedia "Glossary of Genetic Terms" -- over 200 essential terms explained
- Nature's Genome Information Centre - includes great collection of news, ethics articles, useful links
- The Wellcome Trust: genomics resource page
- Centre for Law & Genetics (Univ. of Tasmania)
- University of Pennsylvania's Center for Bioethics' Web page on cloning and genetics.
- BioNews (genetics and assisted reproduction)
- Excellent page of links on genetic research at NIH's National Institute of Mental Health website
- National Bioethics Advisory Commission -- list of reports (including human cloning, stem cell research, and the use of human biological materials)
2. Stem cells
- President Bush's August 2001 policy statement (HTML) (PDF)
- NIH's 2000 Guidelines (pdf) (Aug. 25, 2000); (corrections (pdf)) (Nov. 21, 2001)
- NIH's Nov. 2001 withdrawal of part of 2000 Guidelines (Nov. 11, 2001)
- OHRP's "Guidance for Investigators and Institutional Review Boards Regarding Research Involving Human Embryonic Stem Cells, Germ Cells, and Cell-Derived Test Articles" (PDF)
- NIH's stem cell information page
- AAAS Stem Cell Research Policy Brief
- Someone else's stem cell information page
- Yahoo!'s stem cell information page
- Google's stem cell page (legal issues)
- Committee on the Biological and Biomedical Applications of Stem Cell Research, Board on Life Sciences, National Research Council, Board on Neuroscience and Behavioral Health, Institute of Medicine: Stem Cells and the Future of Regenerative Medicine (Sept. 11, 2001) (pdf)
- British Government: "Chief Medical Officer's Expert Group Report 'Stem Cell Research: Medical Progress with Responsibility' (Aug. 16, 2000)"
- British Human Fertilisation and Embryology Act 1990
- National Conference of State Legislatures Genetic Technologies Project
- State Genetics Laws and Genetics Legislative Activity
3. Cloning
- President's Council on Bioethics' report on human cloning (July 2002)
- Committee on Science, Engineering, and Public Policy, Policy and Global Affairs Division, Board on Life Sciences, Division on Earth and Life Studies, National Research Council report: "Scientific and Medical Aspects of Human Reproductive Cloning" (Jan. 18, 2002) (PDF) (report home page)
- National Conference of State Legislatures' cloning page
- Yahoo's cloning page
- Google's cloning page (ethics page)
- The New York Times has a good collection of articles on cloning.
- New Scientist's cloning page -- continuously updated, a good source of news and views on the subject
- Conceiving a Clone -- information, issues, regulations, public debate: a very complete site. Also has an "unenhanced" version for 1.x and 2.x browsers.
- Catholic Bishops' "Cloning and Embryo Research" page
- "Cloning People and Jewish Law - A Preliminary Analysis," from Jewish Law webpage
- TAMU's Genetics Savings& Clone website - Pet Division - bioethics page - Missyplicity Project
4. Associations, societies, etc.
- The American Society of Human Genetics
- Genetics Society of America
- American College of Medical Genetics
- American Board of Medical Genetics
- American Board of Genetic Counseling
- Association of Professors of Human or Medical Genetics
- International Federation of Human Genetics Societies
- American Society for Reproductive Medicine
5. Miscellaneous
- Organization for Economic Co-operation and Development (OECD): biotech
- UCLA's Web page on Human Germline Engineering.
- UT-Southwestern's standard consent template, checklist, and regulations for genetic research
- GeneTests (from Nat'l Library of Medicine (NIH) and Maternal & Child Health Bureau (HRSA)
- Complaint in wrongful death action on behalf of Jesse Gelsinger
- You never know for how long an individual will maintain a personal page of links, but at least for the time being, Bryn Williams-Jones, a Ph.D. student at the University of British Columbia, has an impressive number of bioethics-related links, mostly related to genetics and biotechnology, including separate collections on genetics and the law and "genethics."
- NIH/Office of Biotechnology Activities/Recombinant DNA Advisory Committee
- U.S. Patent & Trademark Office (press releases) | Notice of Utility Examination Guidelines for gene patents (Jan. 5, 2001, Fed. Reg.)
- The Human Genome Project has a good page on ELSI (Ethical, Legal and Social Issues). See also the National Human Genome Research Institute's ELSI page and ELSI's bioethics bibliography.
- NIH's National Center for Biotechnology has a nice page on Human Genome Sequencing.
- See also the Talking Glossary of Genetic Terms from NIH's National Human Genome Research Institute
- Howard Hughes Medical Institute's "Genetic Trail" site: a good introduction to the issues
- Image Archive on the American Genetics Movement - from the DNA Learning Center at Cold Spring Harbor Laboratory
- Against Their Will: newspaper series on North Carolina's 41-year experience with eugenic sterilization
F. Human experimentation (see also: my health law pages)
1. Places to start
- NIH: Office of Human Subjects Research (formerly Office for Protection from Research Risks) -- good place to start: here
- "IRB Guidebook (1993)
- extensive list of NIH documents and publications,
- the full-text versions of the "Protection of Human Subjects" regulations (45 C.F.R. Part 46),
- Belmont Report,
- Nuremberg Code
- Helsinki Declaration
- FDA: Clinical Trials and Human Subject Protection
- FDA Information Sheets: Guidance for IRBs and Clinical Investigators
- FDA: CDER's Information for Clinical Investigators
- FDA: Advance Notice of Proposed Rulemaking (67 Fed. Reg. 10115 (March 6, 2002)) re: Institutional Review Boards: Requireing Sponsors and Investigators to Inform IRBs of Any Prior IRB Reviews
- Reports of presidential commissions' (NBAC and PCOB) (II.D.1. & 2., supra)
- IRB Forum
2. Miscellaneous
- Nuffield Council on Bioethics: The ethics of research related to healthcare in developing countries (April 25, 2002, 189 pp.) (PDF)
- AAMC's Conflict of Interest Disclosure Policy (PDF)
- A Standard for the Scientific and Ethical Review of Trial (ASSERT)
- The Department of Energy, Office of Energy Research, Office of Biological and Environmental Research's web page, "Protecting Human Subjects" is a good source of information.
- PhRMA's "Principles on Conduct of Clinical Trials and Communication of Clinical Results"
- The American Statistical Association has posted its "Ethical Guidelines for Statistical Practice," which includes a section on "Responsibilities to Research Subjects."
- Tuskegee: PBS broadcast a story about Pres. Clinton's apology for the Tuskegee study, together with an excellent background piece on Tuskegee. Transcripts are here.
- The U.S. Dep't of Energy's Advisory Committee on Human Radiation Experiments' Final Report is on the DOE website. The National Security Archive at George Washington University has a lot of background information here.
- Medical College of Wisconsin's IRB site has a good collection of links about human research and especially IRBs
- Stanford University's Research Policy Handbook has some useful discussions of research ethics. See also University of California's "Policies Pertaining to Research."
- Another useful collection of materials and links is maintained by Case Western Reserve University.
- Intellectual property rights, foreign trade, human research, and access to experimental AIDS drugs: Treatment Access Forum
- The ethics of clinical research in developing countries: a discussion paper: report from the Nuffield Council on Bioethics (PDF)
- UC-San Diego Online Resource for Instruction in Responsible Conduct of Research
- UT-Southwestern's Certification in the Policies Protecting Human Subjects in Research
- Complaint in wrongful death action on behalf of Jesse Gelsinger
- Complaint in research subjects' suit in Oklahoma melanoma study
- Seattle Times' March 11-15, 2001, series: "Uninformed Consent"
- University of Illinois' White Paper on IRBs and "Mission Creep"
G. International resources
- The United Nations Web site has some good materials, including the 1948 Universal Declaration of Human Rights and the Vienna Declaration and Programme of Action on human rights (1993).
- UNESCO's Universal Declaration on Bioethics and Human Rights (19 October 2005)
- World Medical Association
- World Health Organization
- Like The New England Journal of Medicine and JAMA in this country, both The Lancet and BMJ (The British Medical Journal) devote an ever-increasing amount of space to medical ethics. The Lancet is about to go to "full text/interactive" mode, and apparently it will limit access to subscribers. For the time being, however, a good sampling of articles are available to all, once you have registered with a (free) user name and password.
- University of Toronto Joint Centre for Bioethics -- very good collection of materials, including the complete series from the Canadian Medical Association Journal, "Bioethics for Clinicians".
- The UK's General Medical Council has a great "Ethical Guidance" page (including Good Medical Practice)
- European Group on Ethics in Science and New Technologies (from the European Commission).
- Organization for Economic Co-operation and Development (OECD): biotech, health
- European Court of Human Rights: Pretty v. The United Kingdom (April 29, 2002)
- The Council of Europe has done a good job of putting on-line all of the full-text documents related to its Convention on Human Rights and Biomedicine.
- Biomed-II-Project is a "European Database Network/Ethics in Medicine, Health Care and Health Professions" sponsored by universities in France, the Netherlands, Sweden, and Germany -- well-organized site, and it's searchable.
- Canadian Institutes of Health Research/Ethics Office
- Finnish National Advisory Board on Health Care and Ethics (ETENE)
- Finnish National Advisory Board on Research Ethics (TENK)
- French National Consultative Committee for Health and Life Sciences
- German National Ethics Commission
- Health Council of the Netherlands
- Hellenic National Bioethics Commission
- Swedish National Council on Medical Ethics
- New Zealand Bioethics Council - includes report on nanotechnology
H. Reproduction
-
See "II.A. Abortion," and "II.E. Genetics," supra
-
"Making Babies": Frontline (PBS) website
-
BioNews (genetics and assisted reproduction)
-
Surrogacy: The American Surrogacy Center has some good resources on-line; see also Growing Generations ("building families of choice" for the gay and lesbian community)
I. Theology and Bioethics
1. Good starting point: Canadian Medical Association Journal: Series: Bioethics for Clinicians
- Aboriginal Cultures (includes discussion of spirituality within native cultures) (Oct. 3, 2000)
- Hinduism & Sikhism (Oct. 31, 2000)
- Chinese Bioethics (includes discussion of influence of Confucianism, Taoism & Buddhism) (Nov. 28, 2000)
- Islamic Bioethics (Jan. 9, 2001)
- Jewish Bioethics (Jan. 23, 2001)
- Catholic Bioethics (July 24, 2001)
- Protestant Bioethics (Feb. 5, 2002) Note: Older articles may be available only through CMA.CA, which requires registration.
See also: Moral Theology/Ethics Links (from the Irish Theological Association)
2. Judaism
- Judaism and Medicine on the Web -- superb collection of materials on Jewish law and medicine
- "Cloning People and Jewish Law - A Preliminary Analysis," from Jewish Law webpage, which also has an extensive index of articles on medicine/health, among other topics
- The Thirteen Principles of Jewish Medical Ethics of Harofei Yaakov Ben Ben-Tzion Halevi
3. Buddhism
4. Catholicism
- National Conference of Catholic Bishops/United States Catholic Conference: bioethics pages
- Catholic Healthcare Ethics (Loras College/Archdiocese of Dubuque)
5. Islam
J. Transplantation
1. Good starting points
- TransWeb has an amazing set of Web links, including links to most, if not all, of the transplant programs with Web pages
- Organ Procurement and Transplant Network (OPTN) web site: joint venture of HRSA and UNOS
2. United Network for Organ Sharing (UNOS)
- Data page
- Newsroom Fact Sheets page
- Transplant Living page (patient information)
- UNOS' Policies -- extremely useful overview
- UNOS' Bylaws can also be useful
- UNOS' bioethics page
3. U.S. Department of Health & Human Services (HHS)
- HHS' Organ Transplantation page
- HHS, Health Resources and Services Administration, Division of Transplantation home page - Legislative and Regulatory Affairs
- HHS OIG's reports: "Informed Consent in Tissue Donation: Expectations and Realities" and "Oversight of Tissue Banking"
4. Institute of Medicine reports
- Organ Procurement and Transplantation: Assessing Current Policies and the Potential Impact of the DHHS Final Rule (July 20, 1999)
- Non-Heart-Beating Organ Transplantation: Practice and Protocols (2000) (also in PDF)
- Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement (1997)
5. Xenotransplantation
- Institute of Medicine, Xenotransplantation: Science, Ethics and Public Policy (1996)
- Nuffield Council on Bioethics, Animal-to-Human Transplants: the ethics of xenotransplantation (1996) (conclusions only)
- [HHS] Secretary's Advisory Committee on Xenotransplantation: Related Links -- very good collection; nice overview essay on "Xenotransplantation" with related links
- CBER Action Plan
- revised PHS Guideline on Infectious Disease Issues in Xenotransplantation
- Beauchamp G, Ethics and xenotransplantation. Canadian Journal of Surgery 1999;42:5-6
- Bühler L et al., Xenotransplantation - State of the Art - Update 1999. Frontiers in Bioscience 1999(4):416-432
- Anatomic Gift Foundation
- American Association of Tissue Banks
6. Miscellaneous
- Texas Department of Health's Organ Donation page
- National Marrow Donor Program
III. On-line Ethics Resources by Specialty
- Anesthesiology: American Society of Anesthesiologists; also check Standards page
- Cardiology: American College of Cardiology
- Emergency medicine: American College of Emergency Physicians; see also "ER" Bioethics
- Internal medicine: American College of Physicians-American Society of Internal Medicine
- Medicine, general: American Medical Association
- Neurology: American Academy of Neurology - see also Code of Conduct & Practice Guidelines
- Neurosurgery: American Association of Neurological Surgeons (position statements)
- Nursing: American Nurses Association
- Obstetrics & gynecology: American College of Obstetrics & Gynecology
- Ophthalmology: American Academy of Ophthalmology
- Pediatrics: American Academy of Pediatrics (full list of policies here)
- Perioperative nursing: Association of Perioperative Registered Nurses
- Pharmaceuticals: PhRMA - Clinical Trials (press release and additional links), Marketing (press release and additional links)
- Pharmacists: American Pharmaceutical Association
- Psychiatry: American Psychiatric Association
- Reproductive medicine: American Society for Reproductive Medicine
- Surgery: American College of Surgeons; also check Statements page
IV. Institutional Links
The main purpose of providing these links is to help students with their research for class projects (in those years that papers are part of the Bioethics course), directed research papers, and law review comments. Accordingly, I have chosen and organized these links with that mission in mind. Some pages are primarily intended to tell the world about the sponsoring organization's mission, publications, and conferences. While this marketing function is important, it doesn't provide much help to researchers; thus, quite a few sites are missing from this list, solely because the sponsoring organizations have made their contributions to bioethics through activities other than maintaining a substantively rich Web page.
- American Society for Bioethics and Humanities (ASBH) -- formerly the Society for Health and Human Values (SHHV), the Society for Bioethics Consultation (SBC), and the American Association of Bioethics (AAB); a good links page, with more online resources promised. See also their document on core competencies for bioethics consultations
- American Society of Law, Medicine & Ethics
- Bayer International Bioethics Advisory Council
- Boston University School of Public Health, Health Law Department -- a fine links page, with especially extensive collections re: research ethics and human rights.
- Case Western Reserve Center for Biomedical Ethics -- news about the Center and a