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Informed consent, despite being a
relatively new concept, is a well-established requirement in
areas such as medical research
and clinical practice whereby
practitioners are required to fulfill certain requirements of
disclosure, achieve understanding,
judge competence, and ensure
voluntariness before obtaining assent from a subject or
patient (Faden and Beauchamp, 1986).
Situations similar to that in medical
research and clinical practice exist in an information
technology setting, whereby
computer users are asked to make
autonomous decisions that can affect important aspects of
their lives, such as their personal
privacy, security, and autonomy.
This paper aims to explore the nature of
informed consent and its applicability to information
technology situations by studying
the traditional theory behind the
concept, the history and use of it in clinical medical
practice and medical research settings,
and the attempts at establishing
informed consent mechanisms in information technology. It
lastly explores a theory of informed
consent based on these ideas that is
specifically aimed at information technology situations.
The seminal literature for theory of
informed consent is Faden and Beauchamp's 1986 "A History and
Theory of Informed Consent".
Although it concentrates primarily on
the medical and legal fields, the concepts it introduces can
be applied to situations in
information technology, and have been in
some specific situations, such as for online interactions
(Friedman et. al. 2000,
Friedman et. al. 2002). In this paper I
argue that the principles of informed consent, as established
in medical research and
clinical practice, can be more generally
described and applied in information technology to offline as
well as online computing
interactions between a variety of
different stakeholders, and not just the generic at-home
end-user/non-specific "practitioner"
stakeholder relationship as explored by
Friedman.
The establishment of informed consent in
the medical field is fairly recent, and is rooted in
reactions to human rights
disasters such as World War II and the
Tuskegee syphilis trials. Information technology is yet to
have such a crisis, and the
establishment of general best practice
guidelines may prevent any disasters stemming from similar
consent issues. This is
especially important considering the
increasing ubiquity of computing and the lack of an industry
regulatory body, although,
ideally, a regulatory body would be best
able to impose such guidelines. As it is, informed consent is
dealt with on an ad-hoc
basis, with potentially serious
implications should something go dramatically wrong. All too
often the practitioners of the
field (for example, companies providing
software, hardware, or support) rely on external standards
for informed consent
guidelines from other fields (such as
from the medical or legal fields), and the governing powers
of these for guidance, which
is essentially the bare minimum required
for legal liability, and often not particularly suited for
situations that may occur in
information technology. This approach,
however, ignores the real need for specification within the
industry for interactions
between stakeholders that places the
users of systems as the primary concern, and not purely
focusing on legal liability.
I would lastly like to discuss a theory
of informed consent for information technology that builds
on the history of medical
informed consent and the concepts
established by Faden and Beauchamp, exploring
* the autonomy of computer users and
other stakeholders in a variety of relationships,
* disclosure of information across
varied platforms and situations,
* the concept of competence, especially
when taking into account the ability for information
technology to provide a significant
level of anonymisation,
* mechanisms of testing for
understanding given the aforementioned anonymisation and
potential range of levels of competence,
and
* ways of achieving a computer user's
autonomous decision free of coercion given the competitive
markets and "free-for-all"
industry.
Investigating the issues at stake here
will provide the groundwork for further research aimed at
establishing sets of guidelines
and best practice documents that will be
able to effectively address informed consent issues within
the information technology
industry.
Faden, R, and Beauchamp, T. A History
and Theory of Informed Consent. Oxford University Press, New
York NY, 1986.
Friedman, B., Felten, E., and Howe, D.
C. Informed Consent in the Mozilla Browser: Implementing
Value-Sensitive Design.
Proceedings of the 35th Hawaii
International Conference on System Sciences, 2002.
Friedman, B., Felten, E., and Millett,
L. I. Informed Consent Online: A Conceptual Model and Design
Principles. UW-CSE Technical
Report Number 2000- 12-2, 2000. |