The goal of the Internet Healthcare Coalition is to educate health care consumers and professionals about the evolving issues relating to the quality of Internet health resources and information. As a response to calls from within the Internet health community, the IHC launched its ongoing "e-Health Ethics Initiative" in October 1999, to provide a forum for the development of a universal set of ethical principles for health-related Web sites. Founded in 1997 and based in Washington, D.C., the Coalition's membership represents every sector of the Internet health space, including consumers, commercial developers of health information, medical libraries, special-interest societies, and manufacturers of regulated drugs and medical devices.
Under the auspices of the IHC's e-Health Ethics Summit Steering Group, The Hastings Center, an independent, not for profit research institute addressing ethical issues in medicine and the life sciences, has reviewed, organised and edited the minutes of the working Summit to develop the current draft Code. While developing the draft, both the Steering Group and The Hastings Center preserved the original language of the working Summit. This draft Code was created with the input from all key Internet Health constituencies, including consumers and patients, health care professionals, ethicists, academicians, dot-com entities, special-interest societies, manufacturers of regulated drugs and medical devices, governmental agencies, and a number of international representatives.
"Never before have we witnessed such broad consensus on such an important topic", commented e-Health Ethics Summit Co-Chair Helga Rippen, MD, PhD, MPH. "Through a very democratic process we have offered the world a truly international, living Code of e-Health Ethics", added e-Health Ethics Summit Co-Chair Ahmad Risk, MD. "Continued review and public consultation will only make it stronger and more widely accepted." The non-profit IHC organisation has focused the generation of an ethical environment on the Internet for health information and health care around five themes, involving quality of content; commercial behaviour; privacy, security, and confidentiality; disclosure; and use of the Internet in the practice of health care provision.
The guiding principles have been determined as follows:
- Quality: organisations and individuals offering health information, products, or services on the Internet have an obligation to
- provide high quality information, products, or services
- provide means for users to evaluate the quality of health information
- Best commercial practices: organisations and individuals who sponsor, promote, or sell health information, products, or services on the Internet have an obligation to
- disclose any information a reasonable person would believe might influence his or her decision to purchase or use products or services
- be truthful and not deceptive
- engage in responsible business relationships and affiliations
- guarantee editorial independence
- Privacy, security, and confidentiality: organisations and individuals providing health information, products, or services on the Internet have an obligation to
- safeguard users' privacy
- obtain users' informed consent when gathering personal information
- Disclosure: organisations and individuals providing health information, products, or services on the Internet have an obligation to candidly disclose
- those factors which could influence content
- the potential risks of providing personal information on the Internet
- Best Practices for provision of health care on the Internet by health care professionals: health care professionals and organisations who provide health information, products, or services on the Internet have an obligation to
- adhere to the highest standards of professional practice
- help patients to understand how the Internet affects the relationship between professional and patient while adapting the highest professional standards to the evolving interactions made possible by the Internet
More information regarding the Internet Healthcare Coalition and its "e-Health Ethics Initiative" can be found on the IHC Web site. The draft can be fully accessed with additional notes and definitions via the International e-Health Code of Ethics home page. Comments about the Code are welcome by means of submitting an Internet feedback form to the Internet Coalition.