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Online Resources


Topics

Bioethics/Biodefense

Center for Civilian Biodefense Studies
Addresses concerns about medical and public health threats posed by biological weapons, by augmenting the potential legal, political and moral prohibitions. www.hopkins-biodefense.org
American Society of Bioethics and Humanities (ASBH)
Serves as a resource for anyone interested in bioethics and humanities by providing a group of further on-line resources and links to aid in finding other related information through the Internet.www.asbh.org
National Reference Center for Bioethics Literature
Offers extensive searches in Bioethics. www.bioethics.georgetown.edu

Caregiving

National Association for Home Care
Extensive listings of publications and videos for professional and general audience, plus searchable directory of over 19,500 home care and hospice agencies. www.nahc.org
The San Francisco Examiner: The Caregivers
Personal stories about issues of chronic care and adult children as caregivers, plus resource listings. www.sfgate.com/examiner/caregivers/
Project Nightlight
Volunteer-based organization with mission of compassionate visiting to the dying; site offers description of outreach programs and training workshops, bulletin board, FAQ about death. www.nightlight.org
National Family Caregivers Association
A 1994 NFCA survey found that there are approximately 18 million family caregivers in the United States; the organization addresses their needs with outreach programs and a newsletter. www.nfcacares.org
Alzheimer's Association
National voluntary organization dedicated to research, education, and support services; site features online caregiver publications, including a brochure on the 10 warning signs of Alzheimer's. www.alz.org
The Body
Provides information from more than thirty HIV/AIDS organizations, with extensive listings of hotlines and other resources, plus forum for asking questions of the experts in the field. www.thebody.com
American Cancer Society
Overview of the organization, along with information about the disease, and clickable map to locate programs in each state of the union. www.cancer.org
American Association of Critical-Care Nurses
The AACN, 76,000 members strong, conducts education programs for critical care nurses; site includes bookstore and events calendar. www.aacn.org
American Medical Association
Sponsored by the 150-year-old association of physicians. Includes an "On-line Doctor Finder," searchable directory of JAMA articles and links to other medical sites. www.ama-assn.org

Genetics

Cincinnati Children'd Hospital, Genetic Education Program for Nurses
A web-based program for nurses which provides 8 hrs continuing education on "Interpreting Family History Information". www.gepn.cchmc.org
National Coalition of Health Professional Education in Genetics
A national effort to promote health professional education and access to information about advances in human genetics. www.nchpeg.org
Centers for Disease Control - Office of Genetics and Disease Prevention
Provides public health professionals with current information on human genetic research and gene discoveries. www.cdc.gov/genetics
The Human Genome Project & ELSI (Ethical, Legal and Social Implications in Genetics)
A program designed to address the ethical, legal and social implications of human genetics research. www.nhgri.nih.gov
UCLA/Oxford UP on Germline Engineering
Web Teaching Tool. Also useful for digital video in Genetics. www.research.mednet.ucla.edu/pmts/germline

End of Life Issues

American Association of Colleges of Nursing (AACN)
End-of-Life Nursing Consortium (ELNEC) - Information on a national education program to improve end-of-life (EOL) care by nurses. www.aacn.nche.edu/elnec
Last Acts
Information about Last Acts, a campaign to improve care and caring at the end of life, is available on the Robert Wood Johnson Foundation's Web site. On the site, you'll find a directory of resources, press releases, a calendar of conferences and other events, and recent reports. www.lastacts.org
Project on Death in America
Far-ranging investigation of coming to terms with death and dying in contemporary America. www.soros.org/death/
Growth House
Detailed, extensive survey of key concerns about death and dying; describes, rates, and reviews related sites. www.growthhouse.org
Euthanasia Research and Guidance Organization (ERGO)
Compendium of information and latest news on "right-to-die" issues, plus glossary of terms. www.islandnet.com/~deathnet/ergo.html
International Anti-Euthanasia Task Force
Extensive information and background materials on euthanasia, assisted suicide, advance directives, disability rights, and pain control. www.iaetf.org
Not Dead Yet
Disability rights organization that strongly opposes the legalization of assisted suicide. Site contains articles, legal briefs, links, and more.
www.acils.com/NotDeadYet
Compassion in Dying
Provides counseling, emotional support, and information for terminally ill patients about intensive pain management, comfort or hospice care, and rational suicide.
www.thebody.com/cid/cidpage.html
University of Toronto Joint Centre for Bioethics
Information and background materials on end-of-life care. www.utoronto.ca/jcb
University of Texas Medical Branch
Offers a CD-ROM program titled, "Ethics and End-of-Life Care". It is an interactive resource for health care professionals. The interactive case presents an opportunity for immersion into a life-like situation that revolves around a significant healthcare problem. The case reflects the complex array of facts and perceptions that occur when an older woman undergoes emergency hospitalization for a cardiac arrest and is resuscitated. www.multimedialab.com
National Hospice Organization
Founded in 1978, NHO is the oldest and largest nonprofit public benefit organization devoted to hospice care. Site features searchable database to locate hospices throughout the United States. www.nho.org
Hospice Foundation of America
Supports the hospice concept through educational programs and grants; site includes online version of Journeys, a newsletter to help individuals deal with grief and loss. www.hospicefoundation.org
Hospice Web
Excellent introduction and overview; full of useful information. www.teleport.com/~hospice
Philadelphia Inquirer Series: Seeking a Good Death
Five-article series addresses the rights of the dying and traces personal stories about end-of-life decision making. www.phillynews.com/packages/end_of_life
Choice in Dying
Explanation of advance directives, with forms for every state available by downloading or mail order. www.choices.org
Eldercare Web
An array of information with focus on economic impacts, such as feasibility of purchasing long-term care insurance. www.elderweb.com

Government Agencies

Medicare & Medicaid Agency
Information, fact sheets, statistics and latest regulations, presented by the Health Care Financing Administration, federal agency that administers the programs. www.hcfa.gov
Social Security Online
The official website of the Social Security Administration, providing information, forms, and resources. www.ssa.gov
National Institute on Aging
Lists and describes educational publications on medical and scientific aspects of aging, with ordering instructions. www.nih.gov/nia

Sources for Seniors

American Association of Retired People
Wealth of information on caregiving, advance directives, and insurance, with listings of national and community-level resources. www.aarp.org/index.html
Seniors-Site
Well-organized with much practical information for seniors, their families, and caregivers, categorized on a site map in a user friendly way. www.seniors-site.com

Medical Ethics and Patient's Rights

The Center for Bioethics at the University of Pennsylvania
Discussion of medical ethical issues for professionals and non-professionals, with special Bioethics for Beginners section. www.med.upenn.edu/~bioethic
The Center for Health Ethics and Law at the West Virginia University
Health ethical issues for professionals and non-professionals. www.hsc.wvu.edu/chel
Nuffield Council of Bioethics
Addresses issues of ethical concern in medicine and biology. www.nuffieldfoundation.org/bioethics
Lawrence Berkeley National Laboratories ELSI in Science (Ethical, Legal, and Social Issues in Science)
This is a pilot project designed to stimulate discussions on the implications of selected areas of scientific research.
www.lbl.gov/education/ELSI/ELSI.html
Centre for Applied Ethics, University of British Columbia
The Centre is an independent unit in the Faculty of Graduate Studies. It is primarily an interdisciplinary research centre which studies a diverse range of topics, including health care practices, business and professional procedures, new information technologies and environmental issues.
www.ethics.ubc.ca
Kennedy Institute of Ethics, Georgetown University
The Joseph P. and Rose F. Kennedy Institute of Ethics, is a teaching and research center offering ethical perspectives on major policy issues. It is the largest university based group of faculty members in the world devoted to research and teaching in biomedical ethics and other areas of applied ethics. The Institute also houses the most extensive library of ethics in the world, the National Reference Center for Bioethics Literature; produces BIOETHICSLINE®, an online medical ethics database; and conducts regular seminars and courses in bioethics.
adminweb.georgetown.edu/research/kie

Spiritual and Religious Issues

National Catholic Bioethics Center
Provides information on ethics in health care. www.ncbcenter.org
Midwest Bioethics Center
Bioethics consultation. General information on ethics. www.midbio.org, www.midbio.com
Robert Wood Johnson
Encourages Policy Actions, Public Dialog to Improve End-of-Life Care. www.rwjf.org
Boston College School of Nursing
Contribute to the dissemination and utilization of ethics knowledge.www.bc.edu/bc_org/avp/son/nen/nen.html