Anton Vedder (Netherlands)
The Internet is quickly becoming one of the most consulted sources of information about diseases and medical treatment. Important characteristics of the Internet are the easy accessibility of the medium for people who look for information and for people who provide information. One can easily seek and find an abundance of information through the Internet. It is also almost equally easy to diffuse information through the Internet. Because of both the ease with which the information is accessible and the ease with which information can be dispersed, it is also relatively easy to disperse incorrect information, or to diffuse manipulated information, or to manipulate the presentation of, in other respects, correct information, intentionally or unintentionally. Conversely, the seeker of information can relatively easily be misled, misinformed, or be tempted to misinterpret information that, in other respects, is correct. Because medical information can be the basis of important decisions and actions regarding health and life, the phenomenon calls for critical ethical assessment.
From a moral point of view, the situation as described gives rise to three main questions:
- How should this situation be evaluated in moral terms from a general point of view? (Is it at all bad that medical information on the Internet is not always reliable? In what way could answers to this question in any respect amount to collective actions aimed at warranting or enhancing reliability of medical information on the Internet? Is it not, for instance, the responsibility of the users of the information to check its reliability?)
- What can or should be done eventually in order to warrant the reliability of medical information on the Internet?
- Who or what institution can be considered to be responsible for guaranteeing the reliability of medical information on the net?
In this paper, I deal with some preliminaries to these questions. Central to it is the question whether the reliability of medical information on the Internet is really a matter of concern to people. I will, first, give a critical overview of previous research on this topic. The main part of the paper, however, will be dedicated to the results of an enquiry (through in-depth interviews held in the spring and early summer of 2002) among a group of patients/consumers, physicians and content providers in the Netherlands in order to investigate what people actually think about the problems indicated. The first results of that inquiry will be published in this paper. (The inquiry is carried out as part of a research project of Tilburg University and the University of Maryland financially supported by the Netherlands Organization for Scientific Research). The paper will focus onthe respondents’ views on the reliability of information on the Internet when compared to other media, the factors that cause the (un-)reliability, the ways in which they assess the reliability of information, experiences of possibly negative consequences of (un-)reliable information on the Internet, possible remedies, and the possibly arising conflicts between these solutions and commonly accepted principles of freedom of speech, privacy, tolerance, and the informational freedoms. Among the respondents will be also content providers and general practitioners. The former are included in order to see whether there is an awareness of the possible problems. The latter are included in order to see whether and how they are confronted with patients who obtain information from the Internet, and what influence this has on the doctor-patient relationship.
With the results of the inquiry, I will be in a better position to measure the extent and seriousness of the problems relating to the reliability of medical information on the Internet. Furthermore, I will use the results to point out the different ways in which people assess the reliability of information from traditional media and from the Internet. Especially, I will clarify what I have elsewhere called secondary epistemic criteria and culturally embedded credibility conferring systems.
(Please, note that the term medical information is used here to refer to medical information in databases on sites of the World Wide Web that can be consulted by patients and consumers or, simply, the general public. Excluded are: (information through) newsgroups and email-distribution lists aiming at the communication to or among patients, electronically enhanced transactions for ordering and selling and buying products, making appointments etc., and online consulting of cyberdoctors or traditional health care professionals. Furthermore, sites (predominantly) aiming at obtaining information from the public, e.g., for purposes of trials and monitoring, and at telemedicine are excluded.)