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Copyright # 2007 by
Lawrence Erlbaum Associates, Inc.
Christine T. Chambers
Conrad V. Fernandez
Departments of Pediatrics and Bioethics, Dalhousie University and IWK Health
Centre, Halifax, Nova Scotia, Canada
Should researchers provide parents with individualized results of their childrens psychological testing conducted for research purposes? Studies that
include psychological testing have the potential
to uncover important information that could
impact a childs welfare, such as learning difficulties or symptoms of psychopathology. The topic of
providing individualized feedback on the results of
psychological testing in research can be viewed as
somewhat comparable to the ethical issues raised
in sharing incidental findings during neuroimaging
research (e.g., Illes et al., 2004) or sharing of complex results such as genetic testing (e.g., Shalowitz
& Miller, 2005). However, to our knowledge,
nothing to date has been published in the psychology literature in which this ethical topic is
explicitly discussed, nor are there clear recommendations from professional bodies for how this type
of feedback should be handled.
Recently, there has been consideration of the
moral obligation and the ethical necessity of
Correspondence should be sent to Marie-josee Lefaivre,
Department of Psychology, Dalhousie University, 1355 Oxford
Street, Halifax, Nova Scotia, Canada, B3H 4J1. E-mail:
lefaivre@dal.ca
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sharing with any person conducting further psychological testing the information around the previously administered measures, regardless of
whether the parents agree to obtain individualized
feedback. If families opted for obtaining individualized feedback, researchers would be encouraged to
provide such feedback by following our recommendations detailed previously. In the alternative, the
researchers should still provide families that decline
such feedback an abbreviated feedback form simply
stating the title and purpose of the study, the date of
participation, the contact information of the principal investigator, the name and type of assessment
measures with clinical utility, and the name of the
person(s) who administered the measures. This is
especially relevant in Case 2 because it does not
explicitly state whether school psychologists or
health professionals are following the participants.
Finally, the consent around feedback should be
revisited with parents at the two follow-ups. This
way, parents would be given the opportunity to
revise their choice as to whether they want to be provided with the feedback.
Conclusions
Respecting the participant as a person is a fundamental responsibility of researchers. It is often
possible to offer individualized results of psychological testing to research participants, but there
are many caveats that must be considered, including reliability and validity of the data, minimizing
coercion to participate, conflicted or unclear roles
of clinician and researcher, and potential harms
such as labeling. There is a strong need for empirical studies investigating the ethical and scientific
implications of providing parents with individualized feedback of results of psychological testing
conducted for research purposes with children.
Such studies could include an examination of psychologists current practices in providing feedback,
the effects of feedback on parents attitudes
toward research, and child outcomes as a result
of the feedback.
References
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.).
Washington, DC: Author.
American Psychological Association. (2002). Ethical principles
of psychologists and code of conduct. Retrieved January
16, 2005, from http://www.apa.org/ethics.
Attkisson, C. C., Rosenblatt, A., & Hoagwood, K. (1996).
Research ethics and human subjects protection in child
mental health services research and community studies.
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Appendix
Example of Feedback Letter
[Date]
[Address]
Dear [parents name]:
Thank you for participating in our recent study
at the [name of site] titled [. . .]. The purpose of
this study was [. . .]. You asked for feedback as
to how your child did on the two vocabulary tests
that were given [date of participation]. This letter
summarizes how your child [childs name] did relative to other boys and girls his=her age.
Scores are given as a percentile. A percentile
means the number of children who scored below
your child out of 100 children of the same age.
For example, the 40th percentile means that your
child performed better than 40% (40 out of 100)
children his=her age. We will then tell you whether
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