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October 7, 2002

Ethics and the Internet
Jim Till, PhD


There's much current concern among health professionals about "the absence of real protection from harm for citizens who use the Internet for health purposes". 1One response has been the development, by a number of organizations, of codes of conduct. Their purpose is to attempt to address the issue of the quality of health information available via the Internet. 1 An example is provided by the eHealth Ethics Initiative of the Internet Healthcare Coalition. 2 It has developed an eHealth Code of Ethics, based on eight guiding principles: candor, honesty, quality, informed consent, privacy, professionalism in online health care, responsible partnering and accountability. 3

When these concerns are presented as ethical issues, other questions can be asked. For example: Are there other concerns about ethics and the Internet that should also be addressed? Might some of these other ethical concerns merit an even higher priority than codes of ethics of the kind developed by the eHealth Ethics Initiative?

The answer to the first question is clearly a "yes". I will mention only two other ethical concerns. One is about the use, for research, of messages sent to online patient self-support communities. Such messages can provide matchless insights into the experiences and views of people affected by major health problems such as cancer. They also raise familiar issues of research ethics, such as informed consent and privacy, but in a novel context. 4

This specific example brings up a more general issue: open access to online information. For example, copyright can be regarded as a valuable way to foster innovation, by way of rewards based on the ownership of "intellectual property". The protection of a particular expression of ideas via copyright can result in a conflict between two major values: innovation and openness. And, of course, how to identify and deal with conflicting values is a major role of ethical research and scholarship. This more general issue has major implications for the "information economy". As Joseph Heath has pointed out, "... even with strong cryptography, it is not certain that the enforcement of property rights over information is viable in the long term".5

From this perspective, my answer to the second question posed above would also be a "yes". My own view is that a crucial way to provide increased online access to novel, valuable and quality-assessed data, information and knowledge is foster open access to the peer-reviewed primary research literature. Examples of recent initiatives in this area are the Budapest Open Access Initiative 6 and the Free Online Scholarship movement . 7As I have pointed out in a recent letter, the strongest justification for open access to the academic literature is this one: if research or scholarship has been supported by public funds or resources, then the results of that research or scholarship should be publicly accessible. 8

References

1. Risk A, Dzenowagis J. Review of internet health information quality initiatives. J Med Internet Res 2001(Oct-Dec); 3(4): E28. [Full text]

2. eHealth Ethics Initiative. [Link to the Initiative]

3. FAQs Regarding the Code. [Link to the FAQs]

4. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. British Medical Journal 2001(10 Nov); 323(7321): 1103-05. [Full text]

5. Heath J. The Efficient Society. Penguin Books Canada Ltd., 2001, p. 276.

6. Budapest Open Access Initiative. [Link to the BOAI]

7. The Free Online Scholarship Newsletter. [Link to the FOS Newsletter]

8. Till JE. Publishing freestyle. [Full text]

Note: The webpages cited in these references were accessed on October 1, 2002.

Jim Till, Ph.D.,
Joint Centre for Bioethics, and Department of Medical Biophysics, University of Toronto,
c/o Ontario Cancer Institute, University Health Network,
610 University Avenue, Room 9-416,
Toronto, Ontario, Canada M5G 2M9


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