informed consent and terms-of-serivce agreements

In an earlier post, I argued that the general principles of research ethics proposed in the Belmont Report in 1979 could help inform our debates about ethical challenges in modern, online research.  For example, there has been some recent debate about whether website terms-of-service agreements should constitute informed consent for experimentation.  To try to answer this question, let’s go back to the Belmont Report.

The Belmont Report argues that the requirement for informed consent comes from the principle of respect for persons.  Further, the Report identifies three elements of informed consent: information, comprehension, and voluntariness. That is, respect for persons implies that participants should be presented with relevant information in a comprehensible format and then should voluntarily agree to participate.  So, how do terms-of-service agreements measure by these criteria?

  • Information: Terms-of-service agreements do not provide meaningful information about any particular experiment.  For example, they do not provide information about the purpose of the research, the procedures that will be used, and the risks and anticipated benefits.  Rather, they simply mention that users may be in “research.”  These blanket statements about “research” in terms-of-service agreement are far below a standard that one would like to make an informed decision about participation in any particular experiment.
  • Comprehension: Terms-of-service agreements are not comprehensible.  Their extremely limited information about possible human subjects research is buried inside of pages of legal gobbledegook.
  • Voluntariness: When considering voluntariness, the Belmont Report makes a distinction between coercion and undue influence that is useful.  Terms-of-service agreements are generally not coercive because people are not forced to accept a terms-of-service and participate in experiments.  But, preventing a person from using a website like Facebook could easily be considered undue influence.  The strongest form of voluntariness would mean that people could participate or not in research study with no penalty.

So, by the three criteria proposed by the Belmont Report — information, comprehension, and voluntariness — website terms-of-service agreements do not provide important elements of informed consent.

 

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