e-Health Ethics Initiative

By Ronald L. Scott

The Federal Trade Commission (FTC) has issued a Consumer Alert warning Internet users of sites making fraudulent health claims (targeted mainly at Web sites that are trying to sell something). See Health Fraud Dot Com: Federal Authorities Warn of False Health Claims on the Internet. An article posted 7/16/98, Finding Medical and Health Policy Information on the Internet addressed the difficulty of evaluating the accuracy of medical information found on the Internet. Even former Surgeon General Dr. C. Everett Koop has been criticized in connection with the drkoop.com web site. See Web Ethics: Another Challenge to Reliability of Health Information on the Internet.

Now the Internet Healthcare Coalition (IHC) seeks to develop and promote a code of conduct through its e-Health Ethics Initiative. The initiative will address ethical principles relevant to online, interactive healthcare communications. The IHC is seeking the consensus of industry, academic, government, patients, and consumer leaders. The initiative will address quality of content; commercial behavior; privacy, security and confidentiality; and use of the Internet in the practice of healthcare. According to its mission statement, the IHC seeks "a self-regulated Internet in which voluntary guidelines provide effective means for the legitimate dissemination of accurate healthcare information." Sponsors of IHC include non-profit philanthropic organizations as well as commercial entities such as Glaxo Wellcome and drkoop.com. The IHC only accepts donations on an "unconditional and unrestricted basis."

The IHC held an e-Health Ethics Summit January 31-February 2. Participants, with consultation from The Hastings Center, drafted a code to serve as a standard for health-related Internet services and sites. The code identifies the following basic principles:

  1. Candor and trustworthiness
  2. Quality of content
  3. Informed consent, privacy & confidentiality
  4. Best commercial practices
  5. Best professional practices (for those who provide health care services online)
The substantive content of the code is not always intuitive within each of the five categories. For example, "privacy" is covered in three separate principles. Under the first principle, the code provides that organizations and individuals providing health information, products, or services on the Internet have an obligation to disclose the potential risks of providing personal information on the Internet. Principle three provides that such organizations and individuals safeguard users’ privacy and obtain users’ informed consent when gathering personal information. Principle four provides that sites should disclose their privacy policies and terms of use.

The draft is posted for public comment through April 14, 2000. Comments will be considered by the e-Health Ethics Summit Steering Group in preparing a final version of the code together with background documents. The code is scheduled for release on May 15th.

The American Medical Association (AMA) has also released guidelines applicable to all AMA web sites. The AMA guidelines are more extensive and detailed than the IHC draft code. For example, the AMA guidelines require clear disclosure of site registration requirements, payment information where charges are made for document delivery, pay per view, or subscription, etc. The AMA guidelines even address Internet irritations by providing that sites should not prevent viewers from returning to a previous site and not redirect viewers to a site the viewer did not intend to visit. The AMA guidelines were published in the March 22/29, 2000 issue of JAMA and are available online at http://www.ama-assn.org/about/guidelines.htm.

Both the IHC and AMA efforts are laudable. The discussion and debate arising from these codes should help define the privacy and other protections needed by patient-consumers when accessing health care web sites. It remains to be seen whether "voluntary" and "self-regulating" codes will offer sufficient protection.