Ethics on the Internet: Know good from bad
Ethics on the Internet: Know good from bad
Unregulated information creates a mixed bag
Clinical bioethics information in today’s hospitals and health care organizations is like a virus professionals are getting and transmitting it. With the Internet providing nationwide and even worldwide access, information is easily more understood and shared. But there is a downside to this.
"The Internet is like a virtual storefront; often there is no telling the good merchandise from the bad, and there is no one to regulate what is being marketed," warns Glenn McGee, PhD, a faculty associate at the center for bioethics at the University of Pennsylvania in Philadelphia. That said, McGee is quick to point out the many benefits for bioethics professionals who tap into specific web sites. (See selected list of recommended sites, p. 46.)
Your ethics committee members can find a wide variety of information on web sites such as abstracts of journal articles, lists of bioethics reference materials, degree and certificate programs in bioethics, resource information such as national and statewide bioethics centers, and professional networks.
Bioethics programs are just beginning to look at how the information on the web is influencing the field of bioethics, says Arthur R. Derse, MD, JD, associate director for medical and legal affairs at the center for the study of bioethics at the Medical College of Wisconsin (MCW) in Milwaukee.
In 1994, Derse developed the college’s web site and on-line discussion forum. Now on any given day the discussion forum, known as a listserv, may include as many as 25-30 participants on topics such as cloning and doctor/patient relationships.
Derse and McGee agree that the Web sites should never take the place of more formal ethics education, but that they are good, free educational tools for a bioethics professional or group on a shoestring budget. "There are no fast or easy answers to difficult ethical dilemmas," cautions Derse. "Web site information is less for the academics in the field and more for those who want access to the academics."
In fact, one of the main reasons that academic ethics programs like MCW and Penn began their on-line services was to handle the demand for information. "So many people were calling us wanting general information on seminars and certification," says McGee. "We wanted to make this type of information easily available."
Now, however, McGee and Derse fear that the electronic information may be entering a new era that is laden with bad information or, even worse, questionable ethical practices.
Deciphering the message
With bioethics information available electronically, who sets limits on what information is made available, how access is provided, and how and why a Web site is marketed? "What has happened along with the good side of this, is that we now have the con of the week on the Web," says McGee.
Some Web sites offer case histories. One currently listed, for example, cites "breathtaking decision seminars available." Indeed, Penn’s center for ethics has been asked to provide ethics consultation electronically and refused.
"There is something quite valuable in having a face-to-face conversation between people that the ethics consult must provide. Doing a consult over the Internet is just not appropriate," says McGee.
One of the first signs of a potential problem with Internet programs is when the originator charges a fee for access, he cautions. Most genuine programs operate with grant funding and do not charge a fee. Some professional societies require memberships, and some professional web sites screen participants. But McGee and Derse urge Medical Ethics Advisor readers to stay clear of either paying to join a listserv or creating a listserv on your own and marketing information or services for money.
McGee relates how one hospital is "selling" its ethics committee case reviews for an annual membership fee costing several hundred dollars. The hospital offers institutional memberships to its Web site and participants "buy" downloaded case information.
These Web experts distinguish this type of marketing from the health care provider who wants to offer information and link up with another Web site. For example, your hospital or nursing home may have policies or guidelines on futility and might want to share the information with readers of another Web site on care of the dying. "The key is to separate good information from good PR," says Derse.
Off to a fresh start
If you would like to tap into bioethics on the Internet, all you need is a telephone modem, a computer, software that allows you to browse different sites, and access through a government, university, or organization site, or through personal subscription to a service such as Compuserve, America Online, Prodigy, Microsoft Network, Erols, or AT&T. This access creates a mailbox. An e-mail address enables you to send and receive information.
The University of Pennsylvania was the first institution in the country to put bioethics information on a Web site.
Its current site includes the following:
• information on an upcoming seminar;
• a list of current faculty members;
• a virtual library (a list of information catalogued by topic);
• bioethics for beginners. This site leads you to a host of information including:
an introduction to basic ethics;
how to enter the field of ethics;
help with homework; a list of reference materials on bioethics and other Web sites for information on bioethics and specific topics such as abortion or AIDS;
lists of professional bioethics organizations, newsletters, journals, and associations;
lists of regional bioethics networks, bioethics centers and programs across the United States and Canada;
• fireside chat. This offering allows you to register for a classroom-like seminar on a particular bioethics topic.
Penn’s fireside chat is the latest version of an education tool in bioethics. The "chat" is held at a specified time and day with a list of prescreened participants. A topic for discussion is chosen currently it is genetics and participants are given a list of readings to review before the Web discussion.
The fireside program allows participants to "comment" by sending messages during the chat, and even creates electronic "triage" to see if comments are relevant. "We have just created the system so we will have to see how well it works," says McGee. The goal is to create a forum for discussion that does not become overloaded. Other similar programs generally are called a listserv. Subscribers register with the list and automatically receive messages each day that are posted by anyone and everyone on the mailing list. "The problem we are finding with some listservs now is that there are too many messages. It’s like being at a loud party and trying to find a way to have a conversation with someone," McGee contends. Some listservs try to solve this problem by limiting access.
Whatever you do, don’t let the fear of new technology keep you from tapping into a whole new source of bioethics education. You can navigate through a listserv by simply clicking on any highlighted words. If a connection fails, don’t give up. It may be that the Web site server is temporarily down. Some offer the opportunity for you to send a message to the server administrator. "We have no way of knowing when our server is down, so it really helps to get a message," explains Tom Tomlinson, PhD, associate professor in the center for ethics, humanities, and life sciences at Michigan State University in East Lansing, and manager of the Society for Health and Human Values Web site.
If you want to get a fresh start, what should you look for? "The best database services are those that give you a good starting point and have lots of outlets for access to other information; don’t spend time searching through programs that dead ends," says Derse. Even so, he adds, "The best place to find bioethics education is still in the bioethics journals and the library."
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