Journal of Clinical Child and Adolescent Psychology

2007, Vol. 36, No. 2, 242252

Copyright # 2007 by
Lawrence Erlbaum Associates, Inc.

Offering Parents Individualized Feedback on the Results of Psychological

Testing Conducted for Research Purposes With Children: Ethical Issues
and Recommendations
Marie-josee Lefaivre
Department of Psychology, Dalhousie University

Christine T. Chambers

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

Departments of Pediatrics and Psychology, Dalhousie University and IWK Health

Centre, Halifax, Nova Scotia, Canada

Conrad V. Fernandez
Departments of Pediatrics and Bioethics, Dalhousie University and IWK Health
Centre, Halifax, Nova Scotia, Canada

Research protocols involving children often include psychological testing as part

of an assessment battery. Inclusion of such testing raises the question of whether
parents (or others) should be offered the individualized results of their childrens psychological testing conducted for research purposes. The purpose of
this article is to provide a review of the ethical issues and principles associated
with individualized feedback of psychological testing conducted for research
purposes. Two hypothetical cases are offered to illustrate the complexities of
this topic. Detailed recommendations for the management of disclosure of the
results of psychological testing in research settings are also proposed.
providing participants with aggregated research
results (i.e., general summaries of study findings;
Fernandez, Kodish, & Weijer, 2003; Partridge &
Winer, 2002). Several studies have demonstrated
that the practice of providing such feedback occurs
inconsistently across research disciplines, including
psychology (Fernandez, Kodish, Shurin, et al.,
2003; Fernandez, Kodish, Taweel, Shurin, &
Weijer, 2003; MacNeil & Fernandez, 2006). Recommendations on how to handle the feedback of
aggregated results provide suggestions as to when
participants should be offered the opportunity for
results (i.e., during the informed consent process),
the type of information that needs to be included
in the summary, and the timing of the availability
of such summaries (i.e., after peer review of study
results; Fernandez, Kodish, & Weijer, 2003).
Although previous recommendations have
focused on summaries of aggregated research
results, a further complicated issue lies in the offer
of providing results of participants individual
psychological testing included in a research protocol, irrespective of the study results. This issue warrants unique attention. Of note, the discussion of
feedback of individual research data is distinct from
that which is legally mandated in circumstances of

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

242

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

RECOMMENDATIONS FOR INDIVIDUALIZED FEEDBACK

clear harm to self or others or suspected cases of

abuse. It is also distinct from broader debriefing
procedures in which participants are provided with
additional details about the nature of an experiment that involved some form of deception.
The purpose of this article is to provide a review
of the ethical issues specific to individualized
feedback. We do so by (a) presenting an overview
of the available ethical standards and guidelines
promulgated by various professional bodies in
psychology, (b) relating ethical principles to the
matter of providing individualized feedback to
parents, and (c) describing the potential impact
of these ethical issues on relevant components of
the research process. We also propose recommendations to facilitate the decision-making process1
in approaching the offer of a return of individualized results to research participants.
To illustrate and contrast how different
research situations may present distinctive ethical
issues around informing young participants and
their parents of psychological test results, we start
by providing two hypothetical research scenarios.
Hypothetical Cases
Case 1
A multidisciplinary team based in a pediatric
teaching hospital is conducting a research study
examining psychological correlates of medical
complications in chronic disease management in
adolescents. Participants were recruited through
the general pediatric clinic. Data collection for
the study included chart reviews and a series of
self-report questionnaires completed by parents
and adolescents with the capacity to consent for
themselves (i.e., mature minors). The research
assistant was under the supervision of a licensed
psychologist who served as one of the studys coinvestigators. This coinvestigator was not involved
in the clinical care of the mature minors. The questionnaire package included a recently developed
depression and anxiety scale that aimed to assess
mood and anxiety symptoms in a pediatric population diagnosed with a chronic illness. A manuscript describing the preliminary psychometric
properties of this scale was under peer review at
the time the study was being conducted. One of
the studys secondary objectives was to further
1
Researchers should consult their Institutional Review
Boards about the existence of possible guidelines for offering
individualized feedback, including institutional policies and
government regulations around the access to information and
privacy legislation, but we hope our recommendations will also
assist Institutional Review Boards to develop policies around
this issue.

evaluate the psychometric properties of this new

measure and its clinical utility in a hospital setting.
Consequently, empirically validated measures of
depression and anxiety were also administered to
provide an assessment of criterion validity. Should
parents of adolescents who score in the clinical
range for depression and anxiety on any of the
measures be informed of individualized results?
Does the fact that the adolescents are mature minors influence the decision regarding to whom to
offer this type of feedback? How should adolescents (or their parents) be told about the results,
and by whom? How does the decision to provideor not providesuch feedback impact
everyone involved in the research process (i.e.,
youth, parents, researchers)?
Case 2
A university research laboratory is conducting a
longitudinal study aimed at identifying psychosocial determinants of school success in children
between the ages of 4 and 7 years at risk for learning difficulties. Participants were recruited within
the community via public announcements and
through after-school programs. Participants were
asked to complete a short cognitive assessment
battery administered by doctoral students under
the supervision of a clinical psychologist. The tests
included in this assessment were well-established
measures with sound psychometric properties.
The study methodology also included longitudinal
follow-up with short-term (i.e., 3-month) and
long-term (i.e., 2-year) reevaluation. Should parents of the young participants be informed of
individualized results on the cognitive assessment
battery? Could the provision of individualized
results be construed as coercive enticement or fair
compensation for participation? What impact
could the timing of feedback have on the results
of subsequent follow-up assessments given the
longitudinal design?

Available Guidelines for Providing

Individualized Feedback to Parents
Professional ethics codes addressing research
conduct in psychology have been established by
the American Psychological Association (APA),
the Society for Research in Child Development
(SRCD) and the Canadian Psychological Association (CPA). These codes provide different emphases and approaches when considering ethical issues.
As a result, researchers are often encouraged to rely
on more than one set of ethical guidelines when
planning and conducting research (APA, 2002;
243

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

LEFAIVRE, CHAMBERS, FERNANDEZ

Ernst, 2003). We provide an overview of selected

North American standards and guidelines (APA,
SRCD, and CPA) in terms of debriefing research
participants in general and examine how these
guidelines specifically relate to individualized feedback in the context of psychological research.
The two predominant ethics codes in the United
States that guide psychological research with children are the Ethical Principles of Psychologists and
Code of Conduct of the APA (2002) and the Ethical
Standards for Research with Children published by
the SRCD (19901991). Both professional bodies
address the general matter of sharing information
about the results of the study (vs. the specific
matter of individualized feedback). Section 8.08:
Debriefingof the current APA code states
(a) Psychologists [should] provide a prompt
opportunity for participants to obtain information about the nature, results, and conclusions of the research, and they [should] take
reasonable steps to correct any misconceptions
that participants may have of which the psychologists are aware.
(b) If scientific or humane values justify delaying
or withholding this information, psychologists
[should] take reasonable measures to reduce
the risk of harm.
(c) When psychologists become aware that
research procedures have harmed a participant, they [should] take reasonable steps to
minimize the harm. (p. 12)
The SRCD addressed sharing the results of a
research project with participants in similar terms
under its Principle 12: Informing Participants.
This principle states.
Immediately after the data are collected, the
investigator should clarify for the research participants any misconceptions that may have arisen.
The investigator also recognizes a duty to report
general findings to participants in terms appropriate to their understanding. Where scientific or
humane values justify withholding information,
every effort should be made so that withholding
the information has no damaging consequences
for the participant.
These standards and principles particularly
focus on the obligation of debriefing research
participants if there has been incomplete disclosure or deception during any phase of the project.
They also recognize the importance of offering a
summary of the studys results. Neither the APA
nor the SRCD ethical codes, however, provide
explicit guidelines on the nature and extent of
the information to be offered, nor do they
specifically address individualized feedback on
results of psychological testing conducted for
244

research purposes.2 The absence of detailed and

comprehensive guidelines in terms of individualized
feedback increases the probability of divergent and
inconsistent interpretations of the ethical standards.
The SRCD code does go further by recognizing
the ethical responsibility of involving parents or
guardians in research with children, which relates
to offering individualized feedback. Principle 9:
Jeopardy clearly states the following:
When, in the course of research, information
comes to the investigators attention that may jeopardize the childs well-being, the investigator has
a responsibility to discuss the information with the
parents or guardians and with those expert in the
field in order that they may arrange the necessary
assistance for the child. (p. xx)
This SRCD principle acknowledges parents and
guardians fundamental right and legal obligation to
be actively involved in any decision that could potentially impact their childrens physical and psychological
health, as well as their education (see also Bersoff &
Bersoff, 1999; Hesson, Bakal, & Dobson, 1993).
Unfortunately, this SRCD principle does not explicitly
operationalize what constitutes information jeopardizing a childs well-being, nor does it specify how feedback should be disseminated in such circumstances.
Nonetheless, the various ethics codes seem to imply
that parents or, if appropriate, the mature minor
should generally be made aware of any pertinent information that might impact the childs safety and welfare.
Ethical Principles in Providing Individualized
Feedback to Parents
In all decisions, researchers must strive to balance fundamental guiding principles such as the
respect for human dignity, beneficence, and justice
that are the foundation of the codes standards.
Respect for a persons dignity is one of the
cardinal principles underlying ethical research.3
2

The Canadian Code of Ethics for Psychologists (CPA, 2001)

offers similar principles and standards when discussing debriefing research participants. The obligation of debriefing is mostly
focused within the context of incomplete disclosure. The concept of debriefing is only briefly mentioned without elaboration
in terms of enhancing the knowledge of participants and providing them with a sense of contribution. The CPA code does
not specifically address individualized feedback on results of
psychological testing conducted within a research context.
3
The Canadian Code of Ethics for Psychologists (CPA, 2001)
goes further than any other code by attributing to it a predominant importance compared to the other ethical principles. It
states that, in absence of clear and imminent danger to the
physical safety of an individual, respect for the dignity of persons should be given more weight when faced with a dilemma
stemming from conflicting principles. The CPA code of ethics
strongly supports, however, that all of its guiding principles
be considered and integrated in any ethical decision making.

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

RECOMMENDATIONS FOR INDIVIDUALIZED FEEDBACK

Indeed, one of the strongest arguments in favor of

offering individualized feedback to research participants is that this procedure obligates researchers
to treat each of their participants primarily as persons or an end in themselves rather than as a
means to an end. Bersoff and Bersoff (1999)
pointed out that even if the individuals
conducting studies simply consider themselves
researchers, it does not preclude the participants
and their families to view these researchers as
clinicians or people in a helping profession.
Indeed, Fisher (2003) conducted a study that
examined adolescent and parents perspectives on
ethical issues around risky behavior (i.e., drug
use and suicide) research. She found that approximately 40% of both groups believed that youth
who report drug problems on research questionnaires are asking for help. Approximately 70%
of youth and parents adopted the same view when
asked about participants reporting suicidal tendencies. Researchers must not ignore the presence
of psychological distress in their young participants simply because the data were collected
for research rather than clinical reasons (Bersoff
& Bersoff, 1999; Drotar et al., 2000).
In fact, ethical regulations also emphasize the
importance of beneficence and the need to do no
harm (see Principle A: Beneficence and Nonmaleficence, APA, 2002). Consequently, under the
ethical principle of beneficence as well as
respect for persons, researchers should provide
information that may positively impact quality of
life or reduce harm. Moreover, researchers are
obligated to provide any information to a participants parents or guardians to support the
parents societal role in reducing harm and
enhancing the well-being of their child (Bersoff &
Bersoff, 1999; Hesson et al., 1993).
Family advocacy groups have further argued
that the children and families who take part in studies are primary stakeholders, and they, consequently, need to be more actively involved in the
full research process (Osher & Telesford, 1996).
The procedure of offering feedback is likely to
reduce the probability that participants may feel
exploited or forgotten as key players in the
research process (Fernandez, Kodish, & Weijer,
2003). The opportunity to gain knowledge, including information provided in any type of debriefing
(e.g., aggregated results or feedback), is often cited
as one of the benefits of research participation
(Eyde, 2000; Tri-Council Policy Statement, 1998
with 2000, 2002 updates). Similarly, investigators
must also consider that participants and their families are entitled to fairness and justice throughout
the research process (see Principle D: Justice,
APA, 2002). Coercive incentives need to be

avoided, but every research participant is entitled

to fair compensation for their contribution to
the study.

Ethical Issues Involved in Offering

Individualized Feedback to Parents
Besides the different advantages, there are also
several viable arguments that suggest that individualized debriefing of psychological testing for
research purposes may be associated with certain
risks. As a result, this section explores ethical
issues raised by the individualized return of results
by discussing their potential impact on relevant
components of the research process. This section
highlights some of the clinical and scientific repercussions associated with these ethical issues.
Informed Consent Procedures
The concept that parents have a right to
relevant individual results of research should first
be addressed before any assessment measures are
collected. The implications of offering feedback
are relevant in terms of recruitment strategies
and the initial consent procedure. We believe that
the decision by the researcher to offer or not offer
the individualized results of psychological testing
needs to be clearly explained and justified to the
participants during the consent procedure. The
availability of individualized feedback may influence participants or their parents decision to take
part in a study.
We also emphasize the offering of individualized feedback rather than the automatic provision
of results, because informed participants and their
guardians must also have the right to decline
such feedback. The decision to receive or decline
research results should be made only after the participant has been fully informed of inherent risks
and benefits (Fernandez, Kodish, & Weijer, 2003;
see also Standard 8.02 of APA, 2002). Parents
may prefer to not know the results of psychological testing to avoid any labeling of their child or to
avoid pathologizing what they may see as simply
eccentricities or unique personality characteristics.
The emphasis on an offer is also in line with the
APAs 8.08 Debriefing Standard, which specifies
that it is the opportunity to obtain the information
that should be provided to participants.
This ethical necessity of informing participants
about the availability or the absence of individualized feedback during the consent procedure is
not, however, without scientific consequences.
Stanton, Burker, and Kershaw (1991) experimentally manipulated consent forms to examine the
245

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

LEFAIVRE, CHAMBERS, FERNANDEZ

impact of expected follow-up procedures on the

self-report of depressive symptoms in an undergraduate sample. They found that participants,
especially men, who were told beforehand to expect
a more intrusive follow-up (e.g., experimenter may
contact participant and a significant other based on
scores on a depression scale) were less likely to
report depressive symptoms compared to participants who were informed of a less intrusive
follow-up protocol (e.g., a list of community
psychological resources provided to all participants
and no further contact is offered). In another study
(Fisher, 2003), when asked whether waiving the
parental permission procedure or assuring confidentiality would have an important impact on the
validity and honesty of youths responses on selfreport measures, a notable majority of the adolescent responders answered in the affirmative.
These results generate important scientific and ethical concerns that place researchers in a potential
conflict of interest as to how they handle these ethical concerns, because these decisions could subsequently affect the integrity of their data.
Research Compensation and Coercion
Some researchers raise concerns that the availability of feedback as part of study protocols may
encourage potential participants to take part in
research to obtain assessment results that would
not otherwise be easily available. The main issue
around these practices stems from a hotly debated
and unresolved issue of what is considered excessive
enticement for research participation (Grady,
2005). Some view the availability of individualized
feedback following participation in a study as an
appropriate way of compensating the participants
time commitment, whereas others are concerned
about coercion, as access to psychological assessments are sometimes subject to significant waiting
lists in the public sector or considerable expense
to parents if obtained in private practice. Professional bodies caution against coercive measures,
such as undue incentives, that seriously jeopardize
participants freedom to consent and, subsequently,
impacts the dignity of the participants. The SRCDs
(19901991) Principle 5: Incentives states.
Incentives to participate in a research project
must be fair and must not unduly exceed the range
of incentives that the child normally experiences.
Whatever incentives are used, the investigator
should always keep in mind that the greater the
possible effects of the investigation on the child,
the greater is the obligation to protect the childs
welfare and freedom. (p. x)
The APAs (2002) Standard 8.06 similarly cautions against coercive practices, given the threat
246

to freedom to consent. Access to feedback on the

individual results of psychological testing of ones
child may represent undue pressure or incentives
that jeopardize a participants freedom to consent.
Researchers could diminish the possibility of
coercion by putting in place measures such as
avoiding citing inducements in their recruitment
materials (e.g., study advertisements) and clearly
explaining, during the consent procedure, what
the individualized feedback will specifically consist
of and its limitations.
The possible threat to freedom to consent as a
result of coercive enticement also has research implications. As Attkisson, Rosenblatt, and Hoagwood
(1996) pointed out, the quality of data frequently
rests on the freedom of choice exerted by the participants and their parents. The availability of individualized feedback might bring about sample biases
that could impact the generalizability of the studys
results. Researchers who offer feedback as a recruitment strategy might be faced with parents and
youths who falsely report difficulties or signs of psychopathology simply to meet the eligibility criteria.
To guard against this possibility, researchers must
be sure to clearly define, a priori, inclusion and
exclusion criteria to minimize sample bias as a result
of offering feedback.
Multiple Roles and Obligations of Researchers
Another ethical conundrum in providing individualized results stems from the multiple relationships and obligations that researchers may hold.
In the context of offering individualized feedback
to the parents of participants, this issue is particularly relevant because researchers might find
themselves divided between respecting childrens
right to privacy (linked to respect for autonomy)
versus parents moral and legal rights to advocate
for their childrens welfare (Fisher, 2003; Hesson
et al., 1993). The difference in a youths cognitive
ability and legal age to consent for a research
study constitutes a complex and delicate reality
wherein health professionals sometimes must
balance their ethical standards with their legal
obligations (see review in Hesson, et al., 1993).
The ability to assent, and ultimately to fully
consent to research, is recognized as a continuum
unrelated to an arbitrary age. However, many statutes, for the sake of simplicity, define a specific
age at which parental consent is required for
research, irrespective of the childs cognitive
maturity (Leikin, 1993; Wendler & Shah, 2003).
In the context of research participation, most state
laws recognize the autonomy of emancipated minors to consent to research; however, state-specific
definitions of mature minors vary in whether this

RECOMMENDATIONS FOR INDIVIDUALIZED FEEDBACK

recognition of autonomy also extends to this

group (Fisher, 2004). These variations make it difficult for the researcher to determine who may
have legal rights to individualized results (parents
vs. mature minors).

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

Research Team Composition

Research team composition must also be considered as teams and protocols are often very
diverse. Multidisciplinary team members may have
different types of expertise, degrees of ethical obligation, and clinical and nonclinical professional
responsibilities. It is important to consider the type
of training and the experience level of the individuals who are directly responsible for data collection (Attkisson et al., 1996; Drotar et al., 2000).
Furthermore, it is not only essential that qualified
professionals are available to competently supervise the administration, scoring, and interpretation
of the clinically relevant measures, but it is also
necessary to have qualified professionals oversee
the sometimes sensitive process of offering individualized feedback to participants (Bersoff &
Bersoff, 1999; Eyde, 2000). The APA (2002) ethics
code addresses the issue of competence in Standards 2.01 and 9.07 (see also Standards 9.09 and
9.10). Therefore, the composition of a research
team might have important ramifications on the
design of the research protocol and the interpretation and feedback of clinically relevant assessment measures and their dissemination.
Similarly, offering feedback to parents directly
affects the researchers, at the very least in terms
of their time commitment, the availability of
resources, and financial impact (Bersoff & Bersoff,
1999). As pointed out by Bersoff and Bersoff, a
researchers qualification level is an ethically irrelevant issue when considering the basic rights of
research participants. Bersoff and Bersoff accurately stated that all participants should have
the same basic rights simply by virtue of their
being in a study and that appropriate ethical
safeguards should be determined by the nature of
the information being collected and not by what
can be reasonably expected given the researchers
level of training and licensure (p. 17).
Psychometric Properties and Clinical Utility
of Assessments
As illustrated in the case examples, measures
that provide individualized results have the potential to unmask clinically relevant signs of learning
difficulties or symptoms of psychopathology.
Therefore, it is essential to consider carefully the
psychometric properties, as well as the available

evidence for the clinical utility of the measures

used in research protocols, when examining
whether it is appropriate to offer individualized
feedback.
Data with clinical ramifications are sometimes
collected to establish the psychometric properties
of a newly developed scale or assessment measure
(e.g., Case 1). In such a case, it is usually difficult
to justify offering individualized feedback to participants before the reliability, validity, and clinical
utility of that measure have been established
Drotar et al., 2000). In addition, research protocols are often insufficient in length and breadth
to make a clinical diagnosis (e.g., Case 2). For
example, researchers often rely on cutoff scores
rather than diagnostic scores to divide participants
into groups or to conduct analyses. The scores
yielded by many psychological measures are more
closely aligned with a dimensional approach,
which differs from the categorical diagnostic system of the Diagnostic and Statistical Manual of
Mental Disorders (fourth edition, text revision;
American Psychiatric Association, 2000). In fact,
it is important to distinguish psychological testing
from diagnostic assessments. The former involves
simply the collection of data, whereas the latter
is ideally a multimethod approach whereby
psychological testing is only one of the various
tools employed to establish a diagnosis (Sattler,
2001).
Adding measures not described in the informed
consent and not directly relevant to the research
question to obtain a more detailed clinical evaluation is ethically inappropriate and scientifically
problematic. It risks, in part, changing the
relationship of the researcher to one of a clinician (Attkisson et al., 1996; Eyde, 2000). This is
particularly problematic in the case of studies in
which the psychological assessments are incidental
to the researchs main purpose (Attkisson et al.,
1996; Eyde, 2000). Therefore, researchers risk having a high false-positive or false-negative rate that
could harm participants (Eyde, 2000).
Given that the feedback provided to families is
likely accompanied by several limitations due to
the issues around collecting data beyond the
research protocol, it may be difficult to predict
how the young participants and their parents will
react when provided with results of psychological
assessments. Principle 13 of the SRCD (1990
1991) ethical standards acknowledges this reality
by stating because the investigators words
may carry unintended weight with parents and
children, caution should be exercised in reporting results, making evaluative statements, or giving advice (p. xx). Consequently, it cannot
be overemphasized that the interpretation of
247

LEFAIVRE, CHAMBERS, FERNANDEZ

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

psychological assessments is a very delicate and

complicated process that needs to be done with
considerable tact (see also Standard 9.02b of
APA, 2002). Drotar et al. (2000) also cautioned
researchers that parents might entertain unrealistic
expectations about the benefits their child will
experience by participating in a research study that
offers feedback on psychological assessment.
Finally, the provision of feedback to parents has
the potential of creating conflict between the parents and the child, especially if they disagree on
the best course of action. There is the risk that a
child will be the subject of unnecessary labeling,
which could further impact his or her relationship
with parents or encourage a self-fulfilling prophecy.
Timing of Feedback and Follow-Up
Any individualized feedback suggesting a clinically significant difficulty may suggest the need
for further assessment to clarify the nature of the
problem. A researchers ethical and professional
obligation to personally offer such assessment
versus the obligation to refer the participant needs
to be considered based on the ethical standards
from different professional bodies. Although not
addressed in the APA (2002) code, Standard II.31
of the CPA (2001) code of ethics stated the requirement to give reasonable assistance to secure
needed psychological services or activities, if personally unable to meet requests for needed psychological services or activities (p. 67). A researcher
may decide that he or she is unable to meet such
a request given a conflict of interest based on multiple relationships or on a lack of qualifications to
deal with the particular problem. This reality could
be problematic in terms of the participants
welfare, if the referral implies that the youth
will be facing long waiting lists before obtaining
the appropriate follow-up. One recommended
approach is to provide participants with a resource
sheet with appropriate and timely referral options.
Furthermore, the timing of the feedback and
subsequent need for additional assessment could
compromise the integrity of the research design,
especially in studies involving long-term followup. This, however, is not only accompanied by
scientific consequences but also by ethical concerns, given that jeopardizing the validity of a
research design could in turn reduce the ethical
value of research participation (Rosenthal, 1994;
cf. Parkinson, 1994). The nature of the assessment
results may also be time sensitive in terms of their
clinical utility. For example, the results of psychoeducational assessments may become outdated
after 2 years of administration due to developmental or situational changes associated with the child.
248

In some cases, it may be appropriate to wait until

the end of a study before providing individualized
feedback. In other cases, it may be necessary to
provide more timely feedback due to the nature
of the psychological issues being assessed or as a
result of the duration of data collection.
The issue of coordinating services is important
if participants are either currently receiving care
from another health professional (e.g., pediatrician) or likely to warrant some kind of professional services (e.g., assessment from school
psychologist). Although written in terms of therapeutic relationships rather than within a research
context, Standard 3.09 (Cooperation with Other
Professionals) of the APA (2002) ethics code obligates psychologists to cooperate with other professionals in order to serve their clients=patients
effectively and appropriately (p. 6; see also Standards II.18, II.19, and II.35 in CPA, 2001). Consequently, it would seem unethical to deny the
parents individualized feedback on their childs
psychological assessment when it has already been
established that they will likely need such assessment.
The professional conducting the subsequent assessment may be unaware that a childs recent participation in a research study with an assessment
component and administer the same measures.
Alternatively, the clinician might be limited in
the type of assessment that can be completed with
the youth because of practice effects due to retesting. This situation is particularly relevant if such
testing involves a cognitive assessment within a
2-year period of research participation. Researchers have to, therefore, carefully design methods
to ensure that inclusion and exclusion criteria
appropriately match their intended research population, including means to ascertain previous
psychological testing that may interfere with the
scientific validity of their study and coordinate
with others who may be involved in similar testing
with the child in the future.
Recommendations for Providing
Individualized Feedback to Parents
Based on the consideration of the guiding
principles of respect for persons, beneficence, and
justice and existing professional psychology ethical
codes and standards, we propose the following
recommendations to investigators conducting
research with children that include psychological
measures:


Researchers should offer

back when well-validated
sures are administered,
measures include either

individualized feedpsychological meabut only if these

normative data or

RECOMMENDATIONS FOR INDIVIDUALIZED FEEDBACK

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

empirically derived cutoffs (e.g., scores shown to

predict clinical diagnosis or risk). Researchers
should not provide feedback for newly developed and unvalidated measures, and measures
without sound psychometric properties for
which no comparative data are available.
Details about the availability of feedback must be
clearly explained to the child and the parent during
the consent procedure and reinforced as the study
concludes. These details ought to explicitly outline
what specific information will be included and what
type of information will not be provided as well as a
reason for this plan. The consent procedure also
needs to specify who will be involved in providing
the feedback, who will access the feedback, and
when and how the feedback will be provided.
Young participants, especially mature minors,
should be actively involved in (and aware of) their
parents decision as to whether to obtain feedback
on their psychological testing during research.
The choice of a youth with the capacity to consent
should be valued and respected. Conversely, parents and researchers also need to be aware that
younger participants might not have attained the
developmental and cognitive maturity needed to
comprehend the complexity involved in being
provided with individualized feedback.
Feedback needs to be delivered in a manner that
is as sensitive and considerate as possible to protect participants and their families dignity and
welfare. The appropriateness of a particular type
of feedback is likely contingent on the population studied, the research design, and anticipated consequences of the results to individuals
or their families. Written feedback in lay language should always be provided. In addition,
face-to-face feedback by a qualified research
team member is important when there are highly
complex or ambiguous results, or when there are
significant negative implications to the individual participant (e.g., clinical diagnosis).
Given the complexity and sensitivity associated
with the interpretation of psychological assessments, the process of offering feedback should be
supervised by a professional qualified to provide
feedback on psychological data. The level of
involvement of this professional would depend on
the nature of the feedback provided to participants.
Specific information provided during feedback
must include the title and purpose of the study
as they appear on the informed consent form
to minimize revealing overly sensitive information. The feedback must also include the date
of participation, the contact information of the
principal investigator, the name and type of
assessment measures, and who administered
the measures.

The results of the psychological testing should

be presented similarly to a brief psychological
report using lay vocabulary that can be easily
comprehended by parents. The performance of
the participants should be described relative to
established norms or cutoff scores. The inclusion
of percentile ranks (provided that a clear explanation of percentiles is included) or a general
description of whether the result falls in the average or below or above average range might also
be appropriate. An example of such a description is provided in the appendix.
 The diagnostic limits of the feedback and the
psychometric properties of the measures for
the particular population in lay language must
be clearly specified in the written feedback.
 Psychological researchers do not have a personal
responsibility to provide clinical follow-up with
the participants, unless there is a risk of harm
to self or others (e.g., suicide risk). They do have
an obligation to provide appropriate and timely
referral options to participants.
 Researchers are encouraged to highlight the
need and importance of informing any person
conducting further psychological testing with
the child about the feedback information around
the measures administered during the study. The
researcher should provide access to lists of completed measures and results to clinicians in a
timely manner.


The Two Cases Revisited

From the previous discussion, it is clear that
offering individualized feedback on the results of
psychological testing to young participants and
their parents represents a complex decision involving numerous ethical, clinical, and scientific implications. We now revisit the hypothetical cases in
light of the previous discussion to illustrate and
contrast how these research situations emphasize
distinct ethical issues.
Case 1
This case illustrates the multiple roles and
obligations of researchers with respect to
individualized feedback, as well as issues around
psychometric properties and clinical implications
of measures. The sample in this case is composed
of adolescents who are mature minors. As a result,
the research team is faced with a dilemma in which
they have to consider respecting the young participants right to privacy as well as their parents
moral and legal rights to be made aware of any
information related to their childrens welfare.
249

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

LEFAIVRE, CHAMBERS, FERNANDEZ

This situation might be particularly delicate if the

adolescents and their parents disagree on whether
they want to be offered the results of the psychological measures.4
The impact of this ethical issue might be minimized by clearly explaining the details and the type
of feedback offered to the youths and their parents
during the consent procedure rather than waiting
until after the data have been collected. It also provides the opportunity for adolescents and their
parents to ask questions or obtain clarifications
about the scope of the feedback before consenting
to the study.
If participants or parents agree to receive individualized feedback, offering the youths a choice of
follow-up options might further minimize conflict.
These options should be based on our suggested
recommendations for offering individualized feedback. This possibility for follow-up options can be
more easily considered in this case, given that the
participants were recruited through their pediatricians clinic. These follow-up options could
include, for example, choosing to first inform their
parents or their pediatrician about the results of
their psychological testing. This suggestion might
also prevent follow-up procedures that are perceived as overly intrusive by the participants and
that, in turn, could increase the probability that
they would under- or overreport symptoms
(Stanton et al., 1991). In this case, the option of
informing the participants pediatrician might also
facilitate the coordination of health services and
the accessibility to improved clinical care.
This hypothetical case also illustrates issues
around the psychometric properties and clinical
utility of the measures included in the protocol.
On one hand, the newly developed measure of
depression and anxiety specifically aims to assess
mood and anxiety symptoms in a pediatric population diagnosed with a chronic illness. The information gathered by this measure might be
particularly useful to this target population. The
measure itself, however, is still under peer review,
and its psychometric properties are not yet clearly
established, which makes them unsuitable as the
basis of individualized feedback at this time. On
the other hand, the empirically validated measures
of depression and anxiety have sound psychometric properties and clinical utility, but the popu4

Although a full discussion on the matter goes beyond the

scope of this article, the clinical implications of the data collected might also place the researchers with a legal obligation
to follow-up with participants answering questionnaire items
indicating that they are at risk of harm (e.g., suicidal risk, child
abuse). This particular type of follow-up might necessitate
breaking confidentiality and following legally mandated reporting procedures.

250

lation norms might not specifically include norms

for youths with chronic illnesses. Nonetheless, it
might still be appropriate to provide the results
of the well-validated measures as long as the clinical psychologist supervising the provision of the
individualized feedback specifies the interpretative
limits of the measures following the guidelines
offered in the questionnaires manuals.
Case 2
The ethical concerns around research compensation and coercion, as well as the issues associated
with the timing of feedback and follow-up, are the
main themes illustrated in this hypothetical case.
In contrast to Case 1, the participants in this case
represent a nonclinical population recruited from
the community and may, therefore, have more limited contact with the health care system. There is,
however, a high probability that these participants
will require some type of educational assessment
for clinical purposes in the near future if they
are, indeed, at high risk for learning disabilities.
As a comprehensive assessment can be subject to
waiting lists or considerable expenses, the availability of individualized feedback provided freeof-charge might be appealing for families.
To minimize ethical concerns around research
compensation and coercion, researchers conducting
this study should explicitly clarify, during the consent procedure, the details and the type of feedback
that will be offered to parents, including the type of
information that will not be provided. This practice
would likely diminish the chances that the families
will entertain false expectations about the benefits
of participating in the study. Moreover, researchers
should not explicitly advertise the availability of
such feedback as their primary recruitment strategy.
By not emphasizing the opportunity for feedback in
the recruitment announcements (e.g., community
posters), researchers would help minimize the presence of undue pressure or incentives. This procedure
might also help diminish the introduction of possible sample biases created by parents who may inaccurately answer questions around the inclusion or
exclusion criteria to access the individualized feedback. The researchers need to carefully define
inclusion criteria to avoid sample biases based on
recruitment issues. Due to practice effects following
repeated administration of measures, researchers
must further consider carefully defining unambiguous eligibility criteria to assess and diminish the risk
of practice effects with participants.
As the participants in this study might be at
higher risk of requiring an educational assessment
in the near future, it will also be essential that
researchers highlight to parents the importance of

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

RECOMMENDATIONS FOR INDIVIDUALIZED FEEDBACK

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.

In K. Hoagwood, P. S. Jenser, & C. B. Fisher (Eds.),

Ethical issues in mental health research with children and
adolescents (pp. 4757). Mahwah, NJ: Lawrence Erlbaum
Associates, Inc.
Bersoff, D. M. & Bersoff, D. N. (1999). Ethical issues in the collection of self-report data. In A. Stone, J. Turkkan, C.
Bachrach, V. Cain, J. Jobe, & H. Kurtzman (Eds.), The
science of self report: Implications for research and practice
(pp. 924). Mahwah, NJ: Lawrence Erlbaum Associates,
Inc.
Canadian Psychological Association. (2001). Companion manual to the Canadian Code of Ethics for Psychologists
(3rd ed.). Ottawa, Ontario, Canada: Author.
Drotar, D., Overhosler, J. C., Levi, R., Walders, N., Robinson,
J. R., Palermo, T. M., et al. (2000). Ethical issues in conducting research with pediatric and clinical child populations in applied settings. In D. Drotar (Ed.), Handbook
of research in pediatric and clinical child psychology
(pp. 305326). New York: Kluwer-Plenum.
Ernst, K. (2003). Textbook coverage of ethical considerations
in research with children. Teaching in Psychology, 30,
253256.
Eyde, L. D. (2000). Other responsibilities to participants. In
B. D. Sales & S. Folkman (Eds.), Ethics in research
with human participants (pp. 6173). Washington, DC:
American Psychological Association.
Fernandez, C. V., Kodish, E., Shurin, S., & Weijer, C. (2003).
Offering to return results to research participants: Attitudes and needs of principal investigators in the childrens
oncology group. Journal of Pediatric Hematology=
Oncology, 25, 704708.
Fernandez, C. V., Kodish, E., Taweel, S., Shurin, S., &
Weijer, C. (2003). Disclosure of the right of research participants to receive research results: An analysis of consent
forms in the Childrens Oncology Group. Cancer, 97,
29042909.
Fernandez, C. V., Kodish, E., & Weijer, C. (2003). Informing
study participants of research results: An ethical imperative. IRB: Ethics and Human Research, 25, 1219.
Fisher, C. B. (2003). Adolescent and parent perspectives on
ethical issues in youth drug use and suicide research. Ethics
and Behavior, 13, 303332.
Fisher, C. B. (2004). Informed consent and clinical research
involving children and adolescents: Implications of the
revised APA ethics code and HIPAA. Journal of Clinical
Child and Adolescent Psychology, 33, 832839.
Grady, C. (2005). Payment of clinical research subjects. Journal
of Clinical Investigation, 115, 16811687.
Hesson, K., Bakal, D., & Dobson, K. S. (1993). Legal and ethical issues concerning childrens rights of consent. Canadian
Psychology, 34, 317328.
Illes, J., Kirschen, M. P., Karetsky, K., Kelly, M., Saha, A.,
Desmond, J. E., et al. (2004). Discovery and disclosure
of incidental findings in neuroimaging research. Journal
of Magnetic Resonance Imaging, 20, 743747.
Leikin, S. (1993). Minors assent, consent, or dissent to medical
research. IRB: Human and Research Ethics, 15, 17.
MacNeil, S. D. & Fernandez, C. V. (2006). Informing research
participants of research results: Analysis of Canadian
university-based research ethics board chairs. Journal of
Medical Ethics, 32, 4954.
Osher, T. W. & Telesford, M. (1996). Involving families to
improve research. In K. Hoagwood, P. S. Jenser, & C. B.
Fisher (Eds.), Ethical issues in mental health research
with children and adolescents (pp. 2939). Mahwah, NJ:
Lawrence Erlbaum Associates, Inc.
Parkinson, S. (1994). Scientific or ethical quality? Psychological
Science, 5, 137138.

251

Downloaded by [Universidad Nacional Colombia] at 11:56 05 March 2015

LEFAIVRE, CHAMBERS, FERNANDEZ

Partridge, A. H. & Winer, E. P. (2002). Informing clinical trial
participants about study results. Journal of the American
Medical Association, 288, 363365.
Rosenthal, R. (1994). Science and ethics in conducting, analyzing, and reporting psychological research. Psychological
Science, 5, 127134.
Sattler, J. M. (2001). Assessment of children: Cognitive applications (4th ed.). La Mesa, CA: Author.
Shalowitz, D. I. & Miller, F. G. (2005). Disclosing individual
results of clinical research: Implications of respect for
participants. Journal of the American Medical Association,
294, 737740.
Society for Research in Child Development. (19901991). Ethical
standards for research with children. Retrieved January 16,
2005, from http:==www.srcd.org=ethicalstandards.html.
Stanton, A. L., Burker, E. J., & Kershaw, D. (1991). Effects of
researcher follow-up of distressed subjects: Trade off
between validity and ethical responsibility? Ethics and
Behavior, 1, 105112.
Tri-Council Policy Statement: Ethical Conduct for Research
Involving Humans (1998, with 2000, 2002 updates). Retrieved
January 16, 2005, from http:==www.pre.ethics.gc.ca=english=
policystatement=policystatement.cfm.
Wendler, D. & Shah, S. (2003). Should children decide whether
they are enrolled in nonbeneficial research? American
Journal of Bioethics, 3, 17.

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

252

this score is average (16th to 84th percentiles),

above ( > 84th percentile) or below ( < 16th percentile) average.
The Peabody Picture Vocabulary TestThird
Edition (PPVTIII) is a test of receptive (hearing)
vocabulary. Receptive vocabulary is your childs
ability to understand words. On this test, your
child received a percentile score of [#]. This is considered [below average=average=above average].
The Expressive Vocabulary Test (EVT) is a test
of expressive (speaking) vocabulary. Expressive
vocabulary is your childs ability to say words that
are meaningful to others. On this test, your child
received a percentile score of [#]. This is considered [below average=average=above average].
Please note that these vocabulary tests were
given as part of a research study by a trained
research assistant who was supervised by a
licensed psychologist. This does not take the place
of a proper language or educational assessment. A
below average score does not necessarily mean
your child has a learning or language problem. If
you have any concerns about your childs learning
or language skills, you should discuss these with
your family doctor or pediatrician. They may
arrange for further testing.
Should your child need a speech and language
or school assessment within the next 2 years, it is
important that the tester knows that your child
has undergone these tests as part of a research
study.
Should you have any questions about this feedback, please contact [name of principal investigator]
at [phone number]. Thank you again for helping us
with this valuable research study!
Sincerely,
[Name of principal investigator
Affiliation and contact information]

Received May 8, 2006

Accepted November 7, 2006