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The Risks, Benefits, and Ethics of Trauma-Focused Research Participation

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The Risks, Benefits, and Ethics of Trauma-Focused Research Participation

John-Paul Legerskia; Sarah L. Bunnellb
a
Department of Psychology, University of North Dakota, b Department of Psychology, University of
Kansas,

Online publication date: 13 December 2010

To cite this Article Legerski, John-Paul and Bunnell, Sarah L.(2010) 'The Risks, Benefits, and Ethics of Trauma-Focused
Research Participation', Ethics & Behavior, 20: 6, 429 — 442
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 ETHICS & BEHAVIOR, 20(6), 429–442
Copyright © 2010 Taylor & Francis Group, LLC
ISSN: 1050-8422 print / 1532-7019 online
DOI: 10.1080/10508422.2010.521443
LEGERSKI
RISKS, BENEFITS,
AND BUNNELL
ETHICS OF TRAUMA RESEARCH

The Risks, Benefits, and Ethics of Trauma-Focused

Research Participation

John-Paul Legerski
Department of Psychology
University of North Dakota

Sarah L. Bunnell
Department of Psychology
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University of Kansas

With the rising interest in the field of trauma research, many Institutional Review Boards, policy-
makers, parents, and others grapple with the impact of trauma-research participation on research
participants’ well-being. Do individuals who participate in trauma-focused research risk experienc-
ing lasting negative effects from participation? What are the potential benefits that may be gleaned
from participation in this work? How can trauma research studies be designed ethically, minimizing
the risk to participants? The following review seeks to answer these questions. This review indi-
cates that most studies in this area have found that only a minority of participants experience dis-
tress when participating in trauma-focused research. Furthermore, these negative feelings tend to
dissipate quickly over time, with the majority of participants self-appraising their participation as
positive, rewarding, and beneficial to society. Design characteristics that may serve to minimize
participants’ risk of experiencing distress are discussed, as well as implications for public policy
and future research.

Keywords: trauma, ethics, risks, benefits, trauma research

In recent years there has been a dramatic increase in the study of the effect of traumatic exposure
on psychological well-being and functioning, both within the United States and abroad (Bedard,
Greif, & Buckley, 2004; Blake, Albano, & Keane, 1992; Figueira et al., 2007). Because of the
growing popularity of this field, Institutional Review Boards (IRBs) are commonly asked to con-
front the myriad of ethical concerns associated with trauma research (e.g., Collogan, Tuma,
Dolan-Sewell, Borja, & Fleischman, 2004). In their analyses of the risks and benefits of trauma re-
search participation, IRBs must decide whether the disclosure and discussion of traumatic events
may be overly distressing for participants, thus violating the spirit of Principle A of the American
Psychological Association’s (2002) Code of Ethics and Professional Conduct, which specifies the
need for nonmaleficence in the research and practice of psychology, and this ethics code’s Stan-
dard 3.04, Avoiding Harm.

Correspondence should be addressed to John-Paul Legerski, University of North Dakota, Department of Psychology,
319 Harvard Street, Grand Forks, ND 58202-8380. E-mail: johnpaul.legerski@und.edu
 430 LEGERSKI AND BUNNELL

Recent investigations have considered how IRBs make decisions about whether proposed
studies are ethically designed (e.g., Becker-Blease & Freyd, 2006; Ceci, Peters, & Plotkin, 1985).
In one of the first examinations of this decision-making process, Ceci et al. presented nine sample
scenarios to 375 IRBs across the United States. Each scenario varied in terms of its level of ethical
violation and the social sensitivity of the research topic. This investigation found that the propos-
als were twice as likely to be rejected if they examined socially sensitive topics compared to
nonsensitive topics, even when no ethical violations were present. The differential decision crite-
ria may reflect hesitancy by IRBs to confront sensitive or traumatic topics such as abuse
(Becker-Blease & Freyd, 2006).
The following example from a recently submitted research proposal to a major state univer-
sity’s review board highlights the concerns that an IRB may raise in response to trauma research
propositions. The planned research asked participants with and without abuse histories to write
about their thoughts and feelings related to their most distressing experiences. A portion of the re-
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sponse from the IRB committee, rejecting the proposal, is included here:

The description of risk is not appropriate for what is asked for by students who may have been victims
of abuse. This is not a minimal risk study, given the material which the participants are asked to recall
and write about; in regards to past physical and sexual abuse. Risks for exacerbation of Post Traumatic
Stress Syndrome [sic], or a decompensation for some one is a very real possibility. This study could be
psychologically damaging to a participant. (Human Subjects Committee, University of Kansas Law-
rence Campus, personal communication, March 10, 2009)

Clearly, the IRB was concerned that probing participants about their past traumatic experi-
ences might cause them severe psychological distress. However, this response also brings to light
an inconsistency between the empirical findings related to the impact of trauma-focused research
participation and the commonly held belief that asking individuals to recount past traumas may
negatively affect their emotional functioning. Thus, the current article is designed to address sev-
eral key issues related to ethically conducting trauma research: (a) Does participation in trauma-
focused research result in the retraumatization of these individuals? (b) Are there other risks, ei-
ther short- or long-term, associated with trauma research participation? (c) Do individuals reap
benefits from the recounting of their negative past experiences? and (d) What are the implications
of this work for the ethical design and evaluation of trauma-focused research? The overarching
goal of this review is to inform a broad audience of researchers, clinicians, and members of IRBs
of the empirical research on participation-related distress reactions, both immediate and over a
time delay, and the positive outcomes participants often identify when taking part in trauma-
focused research studies.

DOES TRAUMA RESEARCH CAUSE RETRAUMATIZATION?

Trauma researchers frequently require participants to recount their traumatic life events and cir-
cumstances in great detail, through the use of interviews, written narratives, or questionnaires.
When discussing past traumatic experiences, the potential exists for participants to experience
negative emotional reactions. As previously noted, some individuals fear that the recounting of a
traumatic event will be in and of itself traumatizing, in essence “retraumatizing” participants.
 RISKS, BENEFITS, ETHICS OF TRAUMA RESEARCH 431

However, trauma researchers argue that equating the recounting of traumatic experiences with
retraumatization is a mischaracterization of the phenomena. Retraumatization involves direct ex-
posure to a traumatic event, either the same event or one that elicits a similar emotional response
(Collogan et al., 2004; Layne et al., 2006). Collogan and colleagues argue that equating distress
from the recollection of an experience to distress elicited from the actual reoccurrence of the event
underestimates the significance of the traumatic event. Therefore, it may be more appropriate to
distinguish retraumatization from the distressing aversive emotional reactions individuals may
experience when recalling traumatic events in the context of a research study.

POTENTIAL RISKS ASSOCIATED WITH TRAUMA

RESEARCH PARTICIPATION
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Although the discussion of negative past experiences in the context of a research study is unlikely
to be equivalent to retraumatization, there may be other risks for participants in trauma-focused
research. For the most part, researchers in this area have operationalized risk as the levels of dis-
tress reported by participants. As there is currently no gold standard for measuring research partic-
ipation-related distress, distress has been measured in a variety of ways, such as whether subjects
report being upset by the interview process (Carlson et al., 2003), being more or less distressed
than during their day-to-day life (Cromer, Freyd, Binder, DePrince, & Becker-Blease, 2006), feel-
ing anxious during participation (Boothroyd & Best, 2003), and being bothered by thoughts or
emotional reactions while participating (Carter-Visscher, Naugle, Bell, & Suvak, 2007).

Immediate Responses to Participation in Trauma Research

When queried about their emotional responses to participation in trauma-focused research, most
participants do not report experiencing distress (see Table 1); however, the percentage of partici-
pants who do experience distress varies considerably across studies. A small percentage of partic-
ipants reported experiencing distress in studies with survivors of the 2001 World Trade Center at-
tacks (12.95%; Galea et al., 2005), injured children requiring medical attention (5%; Kassam-
Adams & Newman, 2002), and motor vehicle accident victims (11%; Ruzek & Zatzick, 2000). A
larger percentage of participants, however, have reported experiencing feelings of distress in stud-
ies with Vietnam Veterans (30%; Parslow, Jorm, O’Toole, Marshall, & Grayson, 2000), psychiat-
ric inpatients (24%; Carlson et al., 2003), and female individuals interviewed 2 weeks after an in-
cident of interpersonal violence (41%; Griffin, Resick, Waldrop, & Mechanic, 2003).
There appears to be some evidence of a connection between rates of traumatic exposure and
participation-related distress reactions. Studies of September 11, 2001, attack victims and individ-
uals with abuse histories report an association between distress levels and intensity of stress expo-
sure, such that individuals with higher rates of exposure experienced higher rates of distress than
individuals with less exposure (Boscarino et al., 2004; Galea et al., 2005; Johnson & Benight,
2003; Newman, Walker, & Gefland, 1999; Walker, Newman, Koss, & Bernstein, 1997). In con-
trast, other investigations with Vietnam veterans and acutely injured adults have shown no such
association between the rates of exposure and distress reactions (Parslow et al., 2000; Ruzek &
Zatzick, 2000). However, in both the studies by Parslow and colleagues and Ruzek and Zatzick,
the researchers found that participation-related distress reactions were more common among indi-
 Downloaded By: [Bunnell, Sarah L.] At: 00:45 14 December 2010

432
TABLE 1
Summary of Distress and Positive Outcomes Associated With Participation in Trauma-Focused Research Studies

Positive Outcomes From Research

Study Citation Sample Characteristics Research Measures Rates of Distress Participation

Brabin & Berah 257 mothers and 160 of Interviewed regarding psychological 23% of mothers and 26% of 72% of mothers and 55% of the
(1995) their partners who function, grief, history of traumatic partners found participation at partners found participation to be
had a stillborn baby exposure, and reactions to stillbirth least mildly distressing. very to mildly helpful.
Carlson et al. 223 psychiatric Interviewed for PTSD and 24% reported being very much or 51% stated that participation was
(2003) inpatients childhood assault experiences extremely upset. useful.
Carter-Visscher, 79 female Childhood victimization interview 3–15% across three different 75% across three different sessions
Naugle, Bell, & undergraduates and negatively arousing sessions reported being distressed reported somewhat beneficial or
Suvak (2007) experimental condition (5–6 on 6-point scale). enjoyable.
DePrince & Chu 129 female Completed questionnaires inquiring Undergraduates’ average distress
(2008) undergraduates and about PTSD, dissociative levels were lower than neutral,
385 from community symptoms, and traumatic events indicating that they did not
sample history indorse being distressed. The
community sample was not
significantly different than neutral.
DePrince & Freyd 468 undergraduate Questionnaires regarding trauma 5.4% of the community sample and Of these 196 participants that rated
(2004) students and 149 history and cost benefit ratio for 6.4% of the undergraduate it distressing, 99% rated the
community participants participants indicated that the importance of this research was
participants questionnaire was distressing; higher than the relative distress.
27.5% community and 25.0%
undergraduate participants
indicated it was somewhat
distressing.
 Downloaded By: [Bunnell, Sarah L.] At: 00:45 14 December 2010

Dyregrov, 12 adults, and 14 Interviewed regarding traumatic life 87% rated experience as positive
Dyregrov, & children (age 6–19) events and circumstances relating (4–5 on a 5-point scale)
Raundalen Bosnian refugees to the Bosnian War
(2000) living in Norway
Galea et al. (2005) 5,774 from community Interviewed regarding PTSD 12.9% being distressed during the
sample living in New symptoms and traumatic life interview, 1.0% at end of
York City during the events and circumstances relating interview.
Sept. 11, 2001, World to attacks
Trade Center attacks
Griffin, Resick, 420 female Interviewed regarding interpersonal 48% rape and physical assault 73% of rape or physical assault
Waldrop, & interpersonal violence (domestic violence, survivors very distressed (6–7 on survivors and 68% of domestic
Mechanic (2003) violence survivors rape, or physical assault) a 7-point scale). 10% of domestic violence survivors indicated that
violence survivors very distressed they would be willing to
(6–7 on a 7-point scale). participate again.
Parslow, Jorm, 641 male Australian PTSD diagnostic interview 75.3% with current PTSD reported 75% reported that they never or
O’Toole, Vietnam veterans including prompts to describe distress, 56.5% with past PTSD, rarely felt that researchers should
Marshall, & worst events experienced during and 20.6% no PTSD. leave them alone.
Grayson (2000) the Vietnam War
Ruzek & Zatzick 117 motor vehicle Traumatic life events interview and 13% reported being unexpectedly 95% of participants reported the
(2000) accident victims questionnaires about PTSD, upset. benefits of participation
dissociation, and depression outweighed the costs and that
they would participate again.

Note. PTSD = posttraumatic stress disorder.

433
 434 LEGERSKI AND BUNNELL

viduals with moderate to high levels of posttraumatic stress disorder (PTSD) symptoms that indi-
viduals will less severe symptoms. These findings suggest that the effects of exposure on distress
reactions may be mediated through PTSD symptoms, in some instances without a direct associa-
tion between exposure and distress.
A number of other studies have also found an association between participation-related dis-
tress reactions and PTSD symptoms. Johnson and Benight (2003) found in their study with vic-
tims of domestic violence that, although a minority of participants reported greater than expected
rates of distress, these individuals also had higher depression and PTSD symptoms, as well as
greater trauma severity. Similarly, in a study of women’s reactions to being asked about abuse ex-
periences, Walker et al. (1997) found that participants who expressed feelings of distress from
participation had higher levels of symptomatic distress and trauma exposure than participants
who reported less distressed. Nevertheless, a few studies have failed to replicate the associations
between PTSD symptom severity and distress reactions (e.g., Kassam-Adams & Newman, 2005;
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Newman, Willard, Sinclair, & Kaloupek, 2001), and more work is needed to examine the interre-
lations between exposure, psychopathology, and participation-related distress reactions.

Long-Term Responses to Participation in Trauma Research

Although some work has examined the immediate distress levels that participants report when
asked about their traumatic experiences, a few studies have examined the potential for lasting neg-
ative consequences from trauma research participation. Although some individuals report feeling
distressed during or immediately following trauma-research participation, the negative emotional
reactions experienced by participants appear to be fleeting (Dyregrov, Dyregrov, & Raundelen,
2000; Galea et al., 2005; Herjanic, Hudson, & Kotloff, 1976; Jorm, Kelly, & Morgan, 2007; Mar-
tin, Perrott, Morris, & Romans, 1999; Runeson & Beskow, 1991). For example, in a large study by
Galea and colleagues, 5,774 participants living in New York City were interviewed about the Sep-
tember 11, 2001, terrorist attacks. Among the participants, 12.9% said they felt some distress dur-
ing the interview, but only 1.0% of those immediately distressed participants were still upset at the
end of the interview period. Furthermore, only 0.3% requested assistance from a counselor fol-
lowing the interview. Similarly, in a sample of women who were part of a community survey,
Martin et al. (1999) found that the negative feelings related to being interviewed about childhood
sexual abuse dropped from 8% of the sample reporting distress immediately following the inter-
view to 2% of the sample reporting distress during a 6-year follow-up.
Carter-Visscher et al. (2007) have also seen this pattern of time-related diffusion of negative
affect in response to recalling a past traumatic experience in individuals displaying symptoms of
PTSD. In their study conducted with college-aged survivors of childhood trauma, they examined
participants’ descriptions of their abuse and PTSD symptoms. In a follow-up session conducted 1
week later, participants’ reactions to the study were assessed. The researchers found that rates of
distress were low and, although the subset of individuals with PTSD symptoms reported more dis-
tress when asked about their trauma histories than other participants, the level of distress among
participants with and without PTSD symptoms was mild and dissipated over time.
Although negative responses to trauma research participation appear to be transitory, decreasing
weeks after a study, positive appraisals of participation seem to increase over time. One study with
Bosnian refugees found that, although participants commonly reported that it was emotionally diffi-
cult to talk about their experiences at the time of their initial interview, they rated their participation
 RISKS, BENEFITS, ETHICS OF TRAUMA RESEARCH 435

as positive when asked about the experience in a follow-up study conducted several years later
(Dyregrov et al., 2000). In another study, Runeson and Beskow (1991) found that in a 2-week fol-
low-up of participants in a trauma-focused study, 83% of participants reported feeling better than
they did immediately after research participation, with 57% reporting that they felt better than they
did before their initial participation. It should be noted that none of the study participants reported
feeling worse at the time of the follow-up than they had before research participation.

Do Individuals Regret Participating in Trauma Research?

A number of studies have shown that among the few participants that do report strong negative
emotions or unanticipated distress, most of them do not regret or negatively evaluate the overall
experience of participation (Black, Kresnow, Simon, Arias, & Shelly, 2006; Draucker, 1999;
Dyregrov, 2004; Griffin et al., 2003; Johnson & Benight, 2003; Kassam-Adams & Newman,
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2005; Walker et al., 1997; Willebrand, 2008). Using a telephone survey method, Black and col-
leagues (2006) asked survivors of violence victimization about their experiences. After describing
their victimization histories, the participants were then asked whether they felt asking these types
of questions was important and if they were upset by them. The majority of the respondents indi-
cated that they were willing to answer such questions about violence and did not find them dis-
tressing. Furthermore, 92% felt such questions were important to be asked.
Similar patterns were observed by Dyregrov (2004) in a sample of bereaved parents who had
lost a child to suicide, SIDS, or accidents; the parents were participants in a three-wave longitudi-
nal study. Although three fourths of the parents reported that it was difficult to discuss their loss,
all parents evaluated the research experience as either positive or very positive, and none of them
regretted their participation. In addition, in their study examining 330 women’s reactions to mea-
sures of previous sexual, physical, and emotional abuse and neglect, Walker et al. (1997) found
that only a small number of participants reported feeling more upset than they had anticipated,
with the vast majority feeling that they would have completed the survey even if they had known
how they would feel before starting the experiment.
However, not all participants report positive gains from the research experience. One analysis of
domestic violence survivors’ views and emotional reactions to a trauma-focused research study
found that 6% of participants expressed regret for participation (Johnson & Benight, 2003). Simi-
larly, a pilot study by Willebrand (2008) examined emotional responses to longitudinal research
participation by burn victims, and they also found that a minority of participants regretted participat-
ing. Out of 41 individuals, 2 participants reported that participation resulted in something negative,
and 3 participants expressed slight regret of participation. Follow-up analyses indicated that each of
them had psychiatric comorbidity before the burn experience, and 2 of the 3 had self-inflicted the
burn. Therefore, although psychiatric comorbidity may increase the likelihood that trauma victims
regret their research participation, the majority of participants do not, despite experiencing some
distress from the process. In other words, for the vast majority participants in trauma-focused re-
search studies, distress from participation does not equate to regret of participation.

The Relationship Between Distress Levels and Attrition

An additional concern surrounding trauma research is the potential selection bias that may be op-
erating on the nature of the samples used in research on trauma experiences, as there may be im-
 436 LEGERSKI AND BUNNELL

portant group differences in trauma-exposed individuals who complete research studies and those
who do not. Although not unique to trauma research, or even social science research as a whole,
there are many methodological challenges associated with the evaluation of group differences be-
tween research participants and individuals who either fail to complete a study or elect not to give
consent. Nevertheless, some researchers have made attempts to address this question. One study
with 142 incarcerated women assessed group differences in the completion of a trauma-focused
interview (Hlavka, Kruttschnitt, & Carbone-López, 2007). The researchers found that among the
17% of participants who did not complete the study, factors such as the severity of physical abuse
in childhood, as well as exposure to adult partner and nonpartner violence, were unrelated to inter-
view completion. When considering the overall frequency of traumatic exposures, however,
noncompleters reportedly experienced a greater number of traumatic experiences across their life-
time than participants who completed the study.
In another study with adult military veterans, 556 participants were given the option of not
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answering questions related to their experiences of sexual assault (Grubaugh, Frueh, &
Magruder, 2005). The participants who declined to answer sexual trauma questions did not
differ from those who were willing to answer such questions on demographic variables or on a
measure of PTSD symptom severity. In is important to note that, in both the study of incarcer-
ated women and of military veterans just outlined, the data refer only to individuals who pro-
vided informed consent. As can be expected, information from nonparticipaters, or individu-
als who refuse participation entirely, was unavailable. Thus it is currently unclear whether
completion rates are related to perceived or experienced research-related distress, as some in-
dividuals may refuse to given consent or withdraw in an effort to avoid anticipated distress
from participation.

Is Trauma-Focused Research More Distressing Than Nontrauma Research?

Although it appears that recalling one’s negative past experiences in a research setting has the po-
tential to elicit fleeting negative emotional responses in a subset of individuals, a related question
is whether emotional reactions to research participation are limited to trauma-focused research.
In a survey of researchers who examine health, cognition, and lung-cardiovascular function,
Newman et al. (2001) found that 57% of research scientists surveyed reported having some of
their participants cry. Another study based on interviews with women regarding their physical and
mental health, as well as their substance abuse status, found that 20% of the participants experi-
enced one of more adverse emotional reactions as a result of the experience (Boothroyd & Best,
2003). Some of these reactions included feeling that their privacy was invaded, fearing that their
personal information would be disclosed to others, feeling anxiety during the interview, and feel-
ing pressure to participate in the study. Therefore, it appears that participation in studies for which
trauma is not the focus can nevertheless elicit negative emotional reactions in a subsample of
participants.
There is some debate over whether trauma research generates higher levels of distress in partic-
ipants than research focused on nontraumatic but emotionally sensitive topics. In a review of par-
ticipants’ experienced levels of distress during psychiatric research participation, Jorm et al.
(2007) found that trauma research resulted in moderately greater levels of distress than other psy-
chiatric research. Similarly, an examination of adolescents’ reactions to questions about their drug
use, suicidal behavior, and physical and sexual abuse revealed that participants with a history of
 RISKS, BENEFITS, ETHICS OF TRAUMA RESEARCH 437

suicidal behavior, illicit drug use, or experiences of physical or sexual abuse indicated that they
were more frequently upset while completing the survey than peers without these experiences
(Langhinrichsen-Rohling, Arata, O’Brien, Bowers, & Klibert, 2006). However, the influence of
abuse or sexual abuse on feeling upset was rather small, explaining only 2% of the variance in ad-
olescents’ ratings of distress levels. The collective influence of suicidal behavior, illicit drug use,
physical abuse, and sexual victimization was only 7.7% of the variance in adolescents’ ratings of
distress levels. In contrast, Cromer et al. (2006) found that questions about GPA and SAT scores,
as well as body image, were perceived as just as stress provoking as questions about maltreatment
in a college sample. Therefore, it is currently unclear whether asking individuals about trauma is
significantly more immediately distressing than asking participants about other potentially emo-
tional events.
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Are Data Collection Procedures Differentially Distressing?

There is evidence to suggest that some research procedures used in trauma-focused research may
be more stress inducing than others. An experimental investigation of various assessment meth-
odologies was conducted by DiLillo, DeGue, Kras, Di Loreto-Colgan, and Nash (2006); the re-
searchers conducted a 2 (abuse status: abused, nonabused) × 3 (survey method: paper and pencil,
face-to-face interview, computer-administered survey) between-groups design. DiLillo and col-
leagues found that participants with a history of abuse reported more distress and mood changes
than nonvictims regardless of the survey types, with the highest rates of distress reported by indi-
viduals in the computer condition. Of interest, the computer condition was also reported by the
college-aged participants to be the preferred method of assessment and was viewed as the most
confidential means of collecting information about maltreatment.
Another study examined participants’ reactions to different trauma assessment procedures
among samples of domestic violence, rape, and physical assault victims (Griffin et al., 2003). As
part of the larger study, the researchers collected information about participants’ trauma history
using a paper-and-pencil questionnaire, a computer-based questionnaire, and a clinical interview.
Physiological monitoring devices were also attached to participants in order to record heart rate
and skin conductance during the assessment. The majority of participants felt that participation in
the study was not distressing and was both an interesting and valuable experience. Across the
types of trauma assessment tools, only the psychophysiological assessment procedure invoked
moderately high levels of distress. The authors noted that although some participants reported ex-
periencing distress during these procedures, the vast majority of participants said they would con-
sider participating in the study again in the future.
Finally, DePrince and Chu (2008) compared cost–benefit assessments of research participa-
tion in two community samples, one which completed a trauma-related questionnaire and the
other which completed both a trauma-related questionnaire and an in-depth interview about their
past experiences. Although the majority of participants in each sample appraised their participa-
tion positively, the researchers found that individuals who completed both the interview and the
questionnaire reported greater personal benefits and rated their participation and the overall con-
ducting of the research more positively than individuals who completed only the questionnaire.
Thus, it appears that the method of assessment may influence how positively or negatively indi-
viduals rate their participation in the research process.
 438 LEGERSKI AND BUNNELL

BENEFITS FROM TRAUMA RESEARCH PARTICIPATION

A number of studies have revealed that the majority of participants who report distress in response
to trauma research participation also report benefitting in some way from their involvement
(Carlson et al., 2003; Dyregrov, 2004; Halek, Murdock, & Fortier, 2005; Johnson & Benight,
2003; Newman et al., 1999). Johnson and Benight found that among 55 female participants with
domestic violence histories, 45% reported positive gains associated with research participation. A
separate study with psychiatric inpatients, which involved structured interviews on PTSD and
childhood physical and sexual assault experiences, found that 51% of the sample felt participation
was useful in some way (Carlson et al., 2003). In addition, Cromer et al. (2006) found that, al-
though answering trauma-related questions caused minor levels of distress, the participants per-
ceived these questions as having great importance and a high ratio of benefits to costs compared to
other kinds of psychological research.
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The expressive writing literature may also provide clues for identifying other potential benefits
associated with trauma-focused research participation, particularly in studies requiring written
descriptions of traumatic experiences. A number of studies have shown that adults who engage in
an expressive writing paradigm, which involves the construction of written narratives over three
to five writing sessions, show improved physical and psychological well-being (Pennebaker,
1997; Pennebaker & Beall, 1986; Smyth, 1998). In particular, it appears that increased emotional
expression in written trauma narratives is associated with these positive outcomes. For instance,
Pennebaker and Beall found that when a sample of healthy undergraduates were asked to write
about either personally traumatic events or trivial events for 4 consecutive days, persons who
wrote about the trauma and the emotions associated with their traumatic experiences had better
long-term health outcomes, as measured by visits to the health center for illness, than both individ-
uals who did not discuss the emotional aspects of traumatic experiences and individuals who
wrote about trivial events. Although individuals appear to benefit from the writing of trauma nar-
ratives in the context of the expressive writing paradigm, additional research is needed to identify
whether completing a questionnaire or discussing traumatic events through participation in
trauma-focused research studies may provide similar improvements in physical and psychologi-
cal health.
In addition to these potential benefits for participation in trauma-focused research, Becker-
Blease and Freyd (2006) argued that there may be significant societal costs for not asking about
trauma. By talking with trauma survivors about their experiences, researchers, clinicians, and
policymakers are able to acknowledge and understand the impact of exposure to traumatic events on
individuals’ psychosocial adjustment. In-depth empirical studies of individuals with trauma histo-
ries provide the opportunity to investigate which events are most traumatizing, how specific aspects
of traumatic exposure differentially impact survivors, and which factors predict one’s ability to re-
bound from these negative experiences. Furthermore, these questions are necessary for the develop-
ment and delineation of the best practices for treatment of traumatic stress-related disorders.

FUTURE DIRECTIONS

There continue to be many new and exciting areas of research on the risks, benefits, and ethics of
trauma-focused research participation. Fortunately, it can be relatively easy to add measures of
 RISKS, BENEFITS, ETHICS OF TRAUMA RESEARCH 439

participation-related distress and appraisals to existing trauma research proposals and agendas. In
addition to adding to the literature in this field, monitoring distress-related symptoms and apprais-
als of participation may also have the added benefit of helping IRBs feel more at ease with
trauma-focused research procedures.
There are several unknowns currently associated with trauma research participation. First, it is
not always clear what evaluation criteria individuals are using when they rate their levels of distress
or regret of participation. Regret or distress from trauma research participation may potentially be
generated from a number of qualitatively different sources, such as strong negative emotional reac-
tions experienced during the study, boredom, or unclear expectations regarding the length and time
commitment of the testing procedure. Although a few notable researchers have begun teasing out
these areas of distress and causes of regret (e.g., Carlson et al., 2003; Carter-Visscher et al., 2007),
more specific operational definitions of distress may be needed to increase the interpretability, and
subsequent validity and reliability, of findings within this body of research.
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In addition to incorporating more fine-tuned measures of distress, one intriguing future area of re-
search may involve comparisons of self-reported distress ratings with measures of social desirability
as well as instruments measuring objective markers of distress such as stress hormone levels. The field
may benefit from this multipronged approach to distress appraisal in trauma-research participants, as
there is reason to expect that self-reports may differ from more objective stress assessments in mean-
ingful ways. This research could potentially lead to interesting and important philosophical and ethical
questions, such as how researchers and IRBs should ethically address instances in which participants’
low self report ratings of distress but objective markers of distress suggest otherwise.
Second, it is unknown whether there may be important group differences in the level of re-
search-related distress experienced by participants and individuals who refuse to give consent, poten-
tially as an effort to avoid anticipated distress. This may create a self-selection bias that underestimates
the potential for experiencing distress among all survivors of traumatic exposures, both those who are
willing to participate and those who are not. On the other hand, it is also unclear whether individuals
who refuse to give consent may be foregoing the noted benefits and potential therapeutic value in par-
ticipating and, if so, whether refusing to discuss stressful life events may be associated with less desir-
able long-term outcomes. Therefore, measuring variables associated with dropout status or nonpar-
ticipation may more clearly elucidate the factors associated with research-related distress and the
long-term outcomes of discussing versus not discussing negative past events in a research setting.
Third, what exactly does the experiencing of distress indicate? Although it is possible that dis-
tress may be indicative of poor adjustment, it is also possible that distress may be symptomatic of
ongoing coping processes. As the research suggests that levels of distress spike during the imme-
diate recalling of negative events but that stress levels decrease over time, it may be that negative
or distressing responses to traumatic memory recounting serves as a trigger for cognitive
reframing and coping processes to resolve and reduce one’s emotion responses. In this way, the
experience of distress may be immediately undesirable but may serve a beneficial role in the
long-term health of the individual.

CONCLUSIONS

IRBs are increasingly faced with the evaluation of studies proposing investigations of trauma re-
actions and IRB members should be informed of the empirical evidence regarding the risks, bene-
 440 LEGERSKI AND BUNNELL

fits, and ethics of trauma-focused research participation. The evidence does not suggest that par-
ticipation in and of itself can be retraumatizing. Furthermore, although there is a risk for some
individuals to experience varying levels of distress during or immediately following participation,
these reactions do not appear to be lasting. Of the participants who do experience some form of
distress, the majority of individuals do not regret their participation, and many acknowledge the
importance of the research, in addition to feelings of personal and/or societal gains from their
experience.
There is some evidence that participants prefer and display lower levels of distress with inter-
views and questionnaires in comparison to other trauma-focused data collection procedures (e.g.,
psychological assessment measures). Nevertheless, there appears to be a lack of gold standard for
measuring distress itself. Because there is reason to expect that self-reports may differ from more
objective stress assessments in meaningful ways, the field would benefit from a multipronged and
consistent approach to distress appraisal in trauma-research participants. Furthermore, the potential
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exists for a self-selecting bias in the individuals who elect to participate in trauma-focused research.
The measurement of variables associated with dropout status or nonparticipation may more clearly
elucidate the long-term outcomes of discussing of negative past events in a research setting.
Although there continue to be many new and exciting questions within this area of research, it ap-
pears that in general, only a minority of participants experience distress and a majority of partici-
pants positively appraise their participation in trauma-focused research. IRB board members not ex-
posed to this literature may be inclined to make decisions uninformed by the research when
evaluating trauma-focused research proposals, in fear of negative effects that may arise from asking
participants to disclose and discuss traumatic events. To prevent this type of bias from pervading
IRB decision making, efforts should be made to help inform IRB members. As can be seen by this
review, a number of researchers have assisted this effort by disseminating their research on the risks
and benefits of trauma-focused research participation in various journals, many of which are dedi-
cated to the issue of ethics in research. To assist IRB committee member in becoming familiar with
the empirical evidence on this topic, researchers submitting trauma-focused research proposals may
benefit from the inclusion of a brief review of the literature on the risks, benefits, and ethics of
trauma-focused research participation alongside their research plan. Through the dissemination and
increased awareness of this extant literature, it is hoped that IRB members may be better able to im-
partially evaluate the potential risks and benefits of trauma-focused research proposals. In this way,
ethically designed investigations into the impact of trauma exposure on individuals’ current and fu-
ture life functioning can further our understanding of this important topic.

ACKNOWLEDGMENTS

We gratefully acknowledge Holly Dawson and Taylor Pierce for their assistance with the prep-
aration of this article. We also thank Andrea Greenhoot and Alisa Miller Beyer for their helpful
feedback at various stages of this project.

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