Report offers guidance in protecting subject privacy
Emphasis placed on importance of medium
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By next year, there may be as many as 500 million people on-line across the world, according to predictions made in October 1999 by the International Data Corporation Survey on Internet Usage. The increasing use of the Internet and the unique challenges posed by the ways in which Internet users form communities and discuss health issues with one another will lead to this growth. Likewise, Internet use makes it difficult for researchers and IRBs to protect a subject’s privacy when it is used as a tool in the research process.
The American Psychological Association in Washington, DC, and the Association of Internet Researchers established task forces to develop guidelines on conducting research that are expected to be available within the next year. In the meantime, a task force established in 1999 by the American Association for the Advancement of Science in Washington, DC, published a report, Ethical and Legal Aspects of Human Subjects Research on the Internet.
Report makes eight key points
Here are some of the key points contained in that report, which is available on-line (www.aaas.org/spp/dspp/sfrl/projects/intres/main.htm):
• Benefits of Internet research: Internet research can increase the public’s knowledge about the use of on-line communities and communication and can give a researcher a convenient way to find a geographically and culturally diverse population. Internet research participants may have a greater opportunity for clarification of concepts, empowerment, and even participation itself than does research that involves face-to-face interviews.
• Risk of identity exposure: Although participants possess greater control over the extent of their participation, there still is the risk of identity exposure since transmissions over the Internet may not be sufficiently protected from access by outsiders. Exposure risks include the research data-gathering phase, data processing, and data storage and dissemination. For example, a researcher may not know that a participant is sharing an e-mail account, or participants may not realize that there is a record of their e-mail exchanges in their Internet service provider’s server’s log files.
• Including vulnerable populations: Since Internet correspondence provides physical anonymity, it is possible that researchers will unwittingly include participants who are children or who otherwise should not be included in the study.
• Obtaining informed consent on-line: Internet discourse and research make it difficult to determine and interpret implied informed consent. For example, researchers may consider themselves exempt from obtaining informed consent off an on-line newsgroup or Usenet support group since they are readily accessible to anyone. However, others argue that researchers have an ethical responsibility to obtain informed consent from users of those forums who may have their own expectations about privacy.
• Covert research and observation: The Internet’s easy access could lead to unethical investigations, such as recording on-line conversations of an Internet community without making the researcher’s presence known. Also, an investigator might pose as a member of a community, giving false information in order to study the group’s reactions and behavior. While some deceptive investigative practice may be justified in other forums, it would be difficult to weigh the potential risks and benefits of deceptive Internet research and undisclosed observation.
• Invasion of Internet privacy: Internet researchers need to delineate the boundaries of the private domain in cyberspace because some Internet users may perceive even their public participation in an on-line support group as containing private information. These Internet forums or groups may vary widely, including everything from unmoderated Usenet bulletin board groups to private e-mail groups with unpublished subscription addresses and enforced requirements for participation. Typically, Internet support group participants expect that only those people who share and understand and respect their situation will participate.
• Quoting from the Internet: Even anonymous quotations pulled from discussions made in Internet forums, bulletin boards, or support groups can be traced back to the original cyber postings and the participant’s pseudonym, which some participants might feel is a violation of their privacy because they have invested in having a particular pseudonym identity.
• Research rewards: Since Internet participants mostly are anonymous, it would appear to be difficult to achieve a fair distribution of burden and rewards during Internet research, the report concludes. However, there are some strategies that Internet researcher could follow that might best protect participant privacy and fairly distribute research benefits. Here are a few ideas from the task force:
- Clearly delineate the types of on-line research that would require compliance and define what is considered private information in cyberspace.
- Assess the risks and benefits of various research methods, including on-line surveys, observational research, and others.
- Improve researchers’ understanding of their subjects’ vulnerability and train them to be sensitive to cultural or political factors that affect that vulnerability.
- Teach investigators about the structure of Internet communities.
- Draw out the boundaries of private vs. public space on the Internet.
- Take a look at existing literature and guidelines for conducting Internet research.
- Examine how IRBs handle ethical issues related to Internet research, and assess existing methods for encouraging responsible on-line research.
- Develop strategies for including curricula on the ethics of Internet research.
- Collect case studies that illustrate the ethical and legal issues surrounding Internet research.
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