Posted: November 10th, 2014

African Americans bear a greater disease burden from HIV/AIDS

African Americans bear a greater disease burden from  HIV/AIDS

Topic: Article Critique

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Name of textbook: ethics in counseling and psychotherapy chapter 10
The Research Assignment must have a minimum of two references. One must be the textbook. The second must come from the journal article. Not more than 550 words, not including the references.
1. A description of at least one aspect of the article that was of personal interest to you.
2. Include the method and result of the article.
3. What are your thoughts about the article, suggestion and comment?
4. What ethical principle(s) might be involved in this paper? Why is examining Decisions to participate in research: views of underserved minority drug users with or at risk for HIV and why is it important in the research and elsewhere
5. The article has to be related to both the chapter 10.
6. What are the good things about this article?
7. Critique the journal article (look for and describe weaknesses). Here, don’t simply “summarize” the article, rather, give its weaknesses. Do not, however, criticize an article for having too few participants
Decisions to partici pate in research: views of underserved minori ty drug users
with or at risk for HIV
Jacquelyn Slomka,* Eric A. Ratliff, Sheryl A. McCurdy, Sandra Timpson, and Mark L. Williams
School of Public Health, University of Texas Health Science Center at Houston, Houston, Texas, USA
(Received 26 May 2007; final version received 12 December 2007)
Under-representation of minority populations, particularly African Americans, in HIV/AIDS research is
problematic becauseAfrican Americansbear a greater disease burden from  HIV/AIDS. Studies of motivations
forparticipatinginresearchhaveemphasizedfactorsaffectingindividuals’willingnesstoparticipateandbarriers
to participation, especially in regardto HIV vaccine research. Little is known about how underserved minority
drugusersperceiveresearchandtheirdecisionstoparticipate.ThisstudydescribesAfricanAmericandrugusers’
perceptionsofresearchparticipationandtheirdecisionstoparticipatebasedonthreekindsofhypotheticalHIV/
AIDS-related clinical studies. In-depth, qualitative interviews were conducted with 37 underserved, African
American crack cocaine users, recruited from participants already enrolled in three different behavioral HIV
preventionstudies.Interviewswererecorded,transcribed,codedforthemesandsub-themesandanalyzedusing
directedandconventionalcontentanalysis.Participants’decisionstotakepartinresearchofteninvolvedmultiple
motivationsforparticipating.Inaddition,decisionstoparticipatewerecharacterizedbyfourthemes:adesirefor
information; skepticism and mistrust of research and researchers; perceptions of medical care and monitoring
within a study; and participant control in decisions to participate or decline participation. Lack of adequate
informationand/ormedicalcareandmonitoringwithinastudywererelatedtomistrust,whiletheprovisionof
informationwasviewedbysomeindividualsasarightandacknowledgementoftheparticipant’scontributionto
thestudy.Participantsperceived,rightlyorwrongly,thatmedicalmonitoringwouldcontrolsomeoftherisksof
a study. Participants also described situations of exerting control over decisions to enter or withdraw from a
research study.Preliminaryfindingssuggestthatcontinuouscommunicationandprovisionofinformationmay
enhance enrollment and adherence. Further exploration of decisions to participate in research will add to the
understanding of this complex phenomenon and enhance the ability of individuals with HIV/AIDS to benefit
from research.
Keywords:researchparticipation;economically-disadvantagedAfricanAmericans/underservedminorities;
drug users; decision making; HIV/AIDS; research ethics
Introduct ion
Economically-disadvantagedminoritiesdisproportio-natelybearthediseaseburdenofHIV/AIDS(Center
for Disease Control and Prevention, 2000). Yet
minorities at risk, African Americans, in particular,
maylackaccesstoordeclineparticipationinresearch
that could provide new treatments or preventive
measures for HIV/AIDS (Djomand et al., 2005;
Gifford et al., 2002; Stone, Mauch, Steger, Janas, &
Craven,1997;Sullivan,McNaghten,&Begley,2007).
Knowledgeofhowresearchparticipantsperceivethe
experience of research and what motivates their
participation can promote their enrollment and pro-tocol adherence and enhance informed consent pro-cesses (Halpern, 2002). Furthermore, increased
minorityenrollmentimprovesapplicabilityofresults,
thereby increasing access of minorities to healthcare
benefits derived from research (Gifford et al., 2002).
Research on participation inHIV/AIDS research
has primarily dealt with barriers to participation
(Mills, Cooper, & Guyatt, 2004) and individuals’
willingness to take part in HIV vaccine trials. The
focus on vaccine trials stemmed from the National
Institutes of Health’s initiative to develop a founda-tion for testing new HIV vaccines as soon as they
becameavailable(Koblinetal.,1998).However,over
a 14-year period, enrollment of minorities in pre-ventive HIV network vaccine trials in the US was
only 17% (Djomand et al., 2005). A variety of
potential influences on minority individuals’ partici-pation in research have been identified, including
accessibility of information on research and HIV;
skepticismaboutwhetheravaccineexists;mistrustof
research, researchers, government and related con-spiracy beliefs; concerns about vaccine-induced
infection, seropositivity, side-effects and social
stigma;vaccinesafety,efficacyandside-effects;study
*Corresponding author. Email: [email protected]
AIDS Care
Vol. 20, No. 10, November 2008, 1224
1232
ISSN 0954-0121 print/ISSN 1360-0451online
#2008 Taylor &Francis
DOI: 10.1080/09540120701866992
http://www.informaworld.com
demands and inconveniences; altruism; incentives to
participate; relationships with research staff; and
post-study care (Allen et al., 2005; Buchbinder
et al., 2004; Golub et al., 2005; Meyers, Metzger,
Navaline,Woody,&McLellan,1994;Newmanetal.,
2006;Priddy,Cheng,Salazar,&Frew,2006;Roberts,
Newman,Duan,&Rudy,2005;Straussetal.,2001).
Among the many potential influences on indivi-duals’ willingness to take part in research, trust and
mistrust have been consistently identified as key
issues affecting African Americans’ views about
research participation in general (Corbie-Smith,
Thomas, & St. George, 2002; Shavers, Lynch, &
Burmeister,2002)andtheirwillingnesstoparticipate
in HIV/AIDS studies in particular (Sengupta et al.,
2000).AfricanAmericans’mistrustisunderscoredby
the prevalence of conspiracy beliefs about HIV,
including perceptions that the government uses HIV
infection as a means to discriminate against African
Americans and marginalized groups such as drug-users. Conspiracy beliefs have been linked to perva-siveracialdiscriminationandidentifiedassignificant
barriers to African American participation in public
health programs dealing with birth control and the
preventionofHIVandotherinfectiousdiseases(Bird
& Bogart, 2005; Bogart & Thornburn, 2005; Ross,
Essien,&Torres,2006).Conspiracybeliefsrelatedto
participating in vaccine research include the belief
that the AIDS epidemic was created by the govern-ment as a means of genocide (Meyers et al., 1994;
Priddyetal.,2006)andthatanHIVvaccineoracure
forAIDS exists but isbeingwithheld by the govern-ment (Allen et al., 2005; Meyers et al., 1994; Priddy
et al., 2006; Roberts et al., 2005).
Studies of participation in HIV/AIDS clinical
trials have noted that health professionals may
influence individuals’ decisions to enroll in clinical
trials.Professionalinfluencesincludetheindividual’s
physician (Ross & Jeffords, 1994), the work of a
dedicated health research team (Madge et al., 2000)
andparticipants’positiveencounterswithresearchers
(Mueller, 2004). However, attitudes of healthcare
providers and investigators have been reported to
adversely affect minority participation. Some physi-cians and researchers perceive difficulty in commu-nicating with minority individuals about research or
assumetheirlackofinterestinparticipatinginstudies
(Stone,Mauch,&Steger,1998).Healthprofessionals
may also assume that minority individuals will have
difficulty complying with a research protocol for a
variety of social, cultural or economic reasons
(Shavers-Hornaday & Lynch, 1997).
Some writers have noted that when actual parti-cipation has been measured by rate of consent by
ethnic group, significant differences in participation
between African American and white participants
have not been demonstrated (Corbie-Smith et al.,
2003;Wendleretal.,2006).Thisfindingsuggeststhat
accessto,andavailabilityof, researchstudies,rather
than attitudes of individual participants toward
research, may have a greater influence on minority
decisions to participate (Wendler et al., 2006).
Although one study (Stone, Mauch, Steger, Janas &
Craven, 1997) found that minority participation in
HIV/AIDS research remained low even when access
to participation was available, a recent large-scale
investigation showed that failure to offer enrollment
was the most commonly reported reason for non-participation across gender and ethnic groups
(Sullivan,McNaghten,Begley,Hutchinson&Cargill,
2007). Furthermore, African Americans may be
under-represented in HIV/AIDS clinical trials, but
they tend to be adequately represented in clinical
researchfocusingonlessstigmatizingdiseasessuchas
hypertension and cancer (El-Sadr & Capps, 1992;
Shavers-Hornaday & Lynch, 1997).
While influences on minority participation in
research have been identified in the literature, little
isknownaboutthedecisionsofdrugusers,especially
non-injectiondrugusers,totakepartinresearch.The
association of substance use, HIV and poor health
outcomes is well-established. Among HIV-infected
individuals engaged in different types of substance
use, crack cocaine users were shown to have the
poorest access to healthcare (Cunningham, Sohler,
Berg, Shapiro, & Heller, 2006). More information is
needed about the decision processes involved in the
participation of minorities and marginalized popula-tions in all kinds of clinical and preventive HIV/
AIDS research. Understanding how underserved
African American drug users view the experience of
researchandtheirdecisionstoparticipateindifferent
kinds of studies can help clarify access issues and
identify participant views of ‘‘best practices’’ regard-ing their recruitment and retention in research
studies.
To explore motivations of underserved African
American drug users to participate in research, a
qualitative interview study was conducted among
individuals already enrolled in minimal risk, HIV-prevention research. This paper examines views of
African American drug users about decisions to
participate in research.
Method s
The study methodology has been described else-where (Slomka, McCurdy, Ratliff, Timpson, &
Williams, 2007). To summarize, from February to
May 2006, in-depth interviews were conducted with
AIDS Care 1225
41 participants enrolled in three different minimal-risk, HIV prevention studies of economically-disad-vantaged, African American crack cocaine users,
with,oratriskfor,HIV.Twoprimarystudiestested
behavioral interventions to prevent HIV; a third
study was a hepatitis vaccine project developed as a
model for an HIV vaccine study. A convenience
sample of interviewees was recruited from partici-pants in the primary studies who had given prior
consent to be contacted about future qualitative
studies. Participants were paid $20 for their time
and travel. Semi-structured interviews lasting 30
45
minutes were conducted until theme saturation was
reached.Interviewsfocused onparticipants’viewsof
research in general and on perceptions of risks,
benefits, inconveniences and financial compensation
using three hypothetical research scenarios. Each
scenario presented an HIV-related study of differing
risk level: (1) a study relating sleep disturbances to
stress in persons with HIV, using a written ques-tionnaire (adapted from Vosvick et al., 2004); (2) a
randomized controlled trial of a medication; and (3)
an HIV vaccine trial (adapted from Coletti et al.,
2003). Because qualitative interviewing is both an
iterative process and an attempt to understand the
meaningofphenomena,participants’viewsofactual
experiences of research participation were elicited as
well as their views evoked by the hypothetical
research scenarios. As per standard qualitative inter-viewing technique, emerging new themes were ex-plored using probe questions. Methods for
establishing quality and credibility of data also
followed standard qualitative methods (Patton,
2002). Verbal consent was obtained prior to each
interview and participants were given an informa-tional letter in lieu of signing a consent form. This
study was approved by the Institutional Review
Board of The University of Texas Health Science
Center at Houston.
Interviews were transcribed verbatim, coded for
themes and sub-themes and analyzed with directed
content analysis (using pre-existing theoretical cate-gories) and conventional content analysis (using
categoriesderivedfromthedata)(Hsieh&Shannon,
2005). Theoretical categories were drawn from the
bioethics and research ethics literature and included
topics of risk, benefit, privacy/confidentiality, ther-apeutic misconception, undue inducement, vulner-ability and trust/mistrust.
Thirty-sevenof41interviewswereincludedinthe
analysis; two were excluded because of recording
failure; one interviewee was not African American;
andoneinterviewwasstoppedbytheresearcherdue
to participant fatigue. Twenty (54%) of the inter-viewees were male whose ages ranged from 22
53
years witha median of40 years.Fifteen participants
(42%) had completed 7
11 years of schooling, 17
(47%) had a 12th grade education and four (11%)
had 13
16 years of schooling. Thirteen (36%) had
theirownhouseorapartment,while20(56%)livedin
others’ homes. Three individuals (8%) had lived in
temporary shelters or ‘‘on the streets’’. Only seven
respondents (19%) had more than $600 income per
month and five (14%) had no monthly income. Of
thoseindividualswhoknewtheirHIVstatus,6(17%)
were sero-positive; 14 (39%) were sero-negative; and
16(44%)didnotknowtheirstatusortheirstatuswas
not verified. Data, except for gender and age, were
missing for one interviewee; percentages were
rounded.
A second investigator reviewed transcripts for
competing or alternative interpretations (Barbour,
2001). All investigators reviewed and refined data
categoriesandinterpretations.Differencesweremini-mal and discussed by investigators to achieve con-sensus.
Results
Interviewswithparticipantsrevealedthatdecisionsto
take part in research, both actual and hypothetical,
were often multifaceted. The primary motivation for
participating in research was monetary compensa-tion, an issue examined in depth elsewhere (Slomka
etal.,2007).Participantsstatednon-financialreasons
forparticipatingasthedesiretohelpmedicalscience
and researchers and to help oneself or one’s family,
especially if affected by the disease being studied.
Some respondents viewed the provision of medical
tests as a benefit of participating in research, while
others viewed such tests as neutral because they
already had healthcare available to them. Access to
new, better and/or free medications and learning
aboutone’sdiseaseconditionandtherisksassociated
with HIV and drug use were also noted as motiva-tions for participating in research.
Thetimeneededtotakepartinastudy,especially
ifitinterferedwithemployment,theinconvenienceof
travel to a study site and concerns about being a
‘‘guinea pig’’ were noted as negative aspects of
participation. Views aboutrisks and potentialharms
of a research study were contingent on numerous
factors,includingtypeofstudy;participants’percep-tions of risks of research are addressed in detail
elsewhere (Slomka, Ratliff, McCurdy, Timpson &
Williams,inpress).Althoughparticipantsexpresseda
multitude of views about research and reasons for
participating and declining participation in research,
overall, decision making was characterized by four
themes: (1) a desire for information; (2) skepticism
1226 J. Slomka et al.
and mistrust of research and researchers; (3) percep-tions of medical care and monitoring within a
research study; and (4) participant control in deci-sions to participate or decline participation in re-search.
Desire for informa tion
For most participants, research was associated with
seeking or finding information, especially informa-tion about drug indications, side-effects and/or spe-cificdiseases.Bothresearchers andparticipantswere
seen as learning from the information derived from
research. Some interviewees reflected the view that
althoughtheylackedknowledgeaboutresearch,they
stillneededinformation.Othersexpressedsentiments
similar to the participant who said that he ‘‘just
would like to know[aboutaresearch study testing a
medication]…I’m just saying I wouldn’t want to
participateinnothingifIcan’tbetoldwhatitis.Why
am I really taking it?’’
Onerespondentwantedtoknowwhatmedication
was being tested in the medication study scenario in
order to ‘‘read up on it’’ and learn about the drug’s
use and side-effects. This respondent, as well as
others,impliedthatwhileresearchersneedtoprovide
information, participants should also actively seek
information about a study because ‘‘you’re putting
something in you that’s not naturally in you’’.
Another interviewee, when presented with the sleep
disturbance study scenario, was asked what other
kinds of information he would want before taking
part in a minimal risk study. He replied:
Whataretheytryingtofindout?…Andwhenthey
find out about stress, okay, what are you trying to
do?You’retryingtofindawaytosuppressstress?Or
you’re trying to find a way to get some kind of
medication for stress? What is you trying to do?
Because I’m getting involved in your study, and I’m
helpingyourresearch.SoIneedtoknowwhatyou’re
trying to do.
This participant’s response suggests not simply a
desireforinformation,butaclaimtoinformationas
a prerequisite to participation and as an acknowl-edgment of one’s contribution to the research study.
In considering the medication study scenario,
some individuals stated a willingness to participate
withoutaskingthenameorkindofdrugtobetested.
More often, though, interviewees were adamant that
they needed information and understood that they
hadarighttosuchinformation.Saidoneparticipant:
‘‘Iwouldhavetoseewhatit[thestudy]wasallabout
andeverything,yeah,first.Youcan’tjustputmeina
research. I would have to find out more about it.’’
Another participant inquired about legal rights:
Now also, when there’s a study like this, would I be
signing anything, as far as if anything happened to
mewhenIwasinit,orwouldIbeabletomakethem
liable or make them un-liable?
In discussing the medication study scenario, an
interviewee admitted his unfamiliarity with medical
termsandnamesofdrugs.Yethestillacknowledged
his right to information about the medication being
tested. His comments also suggest that mistrust can
be generated if information isnot freely providedby
research personnel. When asked if the name of the
studydrugwassomethinghewouldwanttoknow,he
replied:
To an extent, like I’d be worried. You can give me
any name, any name on here, because I’m sure I’m
notawareofthedifferentonesthatyouhave.Butit
would make a difference. I’d like to at least see that
they’re not trying to hide any information given.
Mistrust might make someone more leery or more
inclinedtoaskforinformation.Thissamerespondent
diplomaticallystateshisconcernaboutthepossibility
of not being given adequate information about the
hypothetical HIV vaccine study:
Q: You think that there might be some long-term
effects you think that they might not be telling you
about?
A: Well,notsomuchnottellingmeabout.Maybeit
couldhavebeenoverlookedbythemalso …likeI’m
sure they go completely over it, but there’s always
room for error soI’d be really worried about that.
Mostinterviewees wanted additionalinformation
priortoparticipatinginstudies.Manywoulddepend
on research personnel to provide information,
although a few said they would use a library or the
Internet, or speak with a physician or nurse.
Skeptic ism an d mistru st of resear ch and resear chers
Participants’remarksoftenrevealedskepticismabout
motivesoranoutrightmistrustofresearchersandthe
research endeavor. Interviewees were wary if they
sensed that risks or other information about a study
werenotbeingfullydisclosed.Somerespondentssaid
they would participate to ‘‘find out what’s going on,
like why they doing this research’’. A discrepancy
between the amount of financial compensation and
perceived risk of the study could be a source of
mistrust:
Yeah, that’s too much, that’s just too much money
($500 for the minimal risk sleep disturbance
study) …But that much money would make a
person think, like, what kind of questions I’ve got
to answer, you know, how personal, or whatever it
AIDS Care 1227
is …Five hundred dollars, just for a questionnaire
…Something don’t sound right. You know, for an
hour. I’d be trying to get all kinds of information
before I would participate.
Participants expressed skepticism about research
thatinvolvedtakingpillsorinjections.Otherexpres-sions of skepticism and mistrust appeared to derive
from research studies, apocryphal or real, that were
perceived as harmful or enabling substance use:
They’vegotaprogram right now,theyletyou snort
crack …Well, they were trying to test some kind of
synthetic drug or something. Then they’d try to see
how a person reactions, you know, how he or she
reacts when they should know, what type of, just
what type of effect it takes on.
Q: Why would they do a study like that?
A: I don’t know. That was a question I asked
myself …I really can’tsay.
Q:Becauseit soundslike
could that beharmfulto
theperson?
A: I would think so. To me, I think it
I could be
wrong, but I’ll say it anyway. Ithink you turn them
moreintoadrugaddictthanjusttryingtosendthem
toarehab …Whatthehellisthat,dotheyfeeditto
youfor? …Don’tbreaklawsbytrying,youknow,to
see what kind of examples you can make, or again,
create insomebody.
Q: Well, if there might be some harm to that study,
whydo you think people are participating in it?
A: To get high.
Later,theintervieweesaidhewoulddoamedication
study for $2000. But not the crack study, which he
felt was ‘‘suicide’’: ‘‘ …Keep your crack; keep your
$2000 …’’ he said. This participant interpreted a
research study of a street drug as enabling or
encouragingdruguseandexploitingone’saddiction.
Ingeneral,mistrustofresearchandresearcherscould
result if information about a study was misunder-stood,misinterpretedorperceivedasinadequatelyor
insufficiently disclosed.
Percept ions of medi cal care and moni toring within a
study
While interviewees viewed medical exams and diag-nostictestsasbothabenefitandanexpectedpartofa
clinical study, the provision of healthcare within a
study was important for another reason. A common
perception among interviewees was that the risk of
harm in research studies was mitigated because
participants were monitored for adverse reactions.
One interviewee explained she would be comfortable
participating in a medication study:
Becausethey’regivingyoudrugs.Anewdrugandthe
olddrug.Andyouknowwhattheolddruggoingto
doforyou.Imean,youcomeineveryweek.Soeven
ifyouhaveanybadside-effectsoranything,youcan
comerighttothedoctor.Theycantakeyouoffofit
and stop it right then and there or whatever.
Another respondent stated:
Okay, I don’t see any risks as long as they are
drawing bloodto test and all that there, to see what
condition your body is in or maybe they figure you
could withstand it, or you can’t …Maybe you start
togetsomekindofreactionorsomethingdoesn’tgo
right. They’ll stop you from taking them.
One participant viewed a study of a drug for
paranoid schizophrenia as higher risk, ‘‘But you’d
beinaprogram,andyouknow,theygottawatchyou
night and day because you’re taking pills and they
wanttoseehowyouact,howyou’redoing …’’Even
thoughseveralrespondentsindicateddiscomfortwith
participation in psychotropic drug studies, the per-ception of monitoring appeared to provide some
control over the risks of these medication studies.
When the hypothetical scenarios were presented
as not providing any healthcare for research injury,
interviewees sometimes expressed mistrust or resent-ment. This mistrust appeared to be rooted in the
perception that researchers were not fulfilling their
obligationstotheparticipantsaswellasamisunder-standing of the research process:
I wouldn’t do this (medication) study at all .. .
Because it’s like they won’t give you any medical
care. I mean, like what if you have a side-effect or
anything? They’re not going to give you any pills.
Andthentheydon’tknowwhotookwhatdruguntil
theendoftheprogram.Thatwouldn’tbesomething
I’d want to be in. That’s like a health risk or
something. Hmm-mm. Iwouldn’t trust that.
Participants also expressed concern if they be-lievedhealthinformationobtainedinthecourseofa
study, but unrelated to study data, would be with-held:
Whentheysaythepeoplewhotakepartinthisstudy
will not receive any other tests or treatments except
for
so if there’s something wrong
if they find
something within the medical examination, are they
going to treat it or they say they not going to treat
it? .. .Because if I’m doing this study for them and
they’ve given me all these drugs and they gave me a
medical examination, maybe I haven’t had one in a
while andiftheyfindsomething,Iwouldappreciate
it iftheytoldmeeventhoughit’snotapartoftheir
study. They don’t have to take care of the problem,
just let me know that they seen the problem.
Whether this participant’s concerns were rooted in a
beliefthatthescientificgoalsofthestudywouldtake
1228 J. Slomka et al.
precedence over one’s health or that the medical
system in general is not to be trusted was not clear.
The statement does imply, however, that informing
the participant of an observed, though unrelated
health problem would demonstrate an acknowledge-mentofthepersonandhisorhercontributiontothe
research study.
Overall,intervieweesexpressedviewsthatmedical
exams and diagnostic tests provided as part of the
hypothetical study scenarios were a benefit of re-search participation. Medical care provided within
the study was also perceived as a means of monitor-ing the reactions of the participant to the study and
controlling for risks. The lack of provision of
healthcare resulting from injury within a study or
thepossiblewithholdingofpertinenthealthinforma-tion were viewed as concerns, both in terms of
fairness and risk of physical harm.
Participan t co ntrol in choosing and declining
particip ation
Participantsdemonstratedtheabilitytoexertcontrol
in research situations. Some participants controlled
their time in the interview, either by making a polite
excuse prior to the start of the interview or when an
offer to stop was made by the interviewer once 30
minutes had passed. One participant, when asked if
hewouldliketoreturnforasecondinterview,asked
fortheinterviewer’sbusinesscardinsteadofanswer-ing directly.
Another participant believed a harmful study
medicationcouldberecognized,avoidedandrefused:
It(thestudymedication)couldcauseyouharm.But
yououghttobeabletotell.Youknow,youtakethe
medicine,thatit’sdoingyouharmandtellwhoever’s
in charge of it, I’m not going to take this anymore.
Becauseyourbodyisgoingtotell.Youknow,whenI
take it, it makes me feel like this, and when I don’t
takeit,Idon’tfeel likethat .. .soyou’ll knowifthe
medicineismakingadifferenceor,youknow,bythe
way you feel.
Another interviewee related the story of a friend
who participated in a smoking study that she said
neither of them understood:
And I [the interviewee] don’t even understand that
one [the smoking study]. It was over in the Medical
Center. But she [the acquaintance] didn’t even finish
that study .. .Because she wasn’t too clear on what
reallywasgoingon.Whattheywastryingtogetfrom
her. So she just stopped.
Participants were asked about whether a family
memberorphysicianmightinfluencetheirdecisionto
participate in a research study. Some agreed that
othersmighthaveaninfluence:‘‘Ifadoctortoldme,
I would really go for it. I think, you know, I would
trust his decision, his look at it. Family member,
maybe, maybe. Yeah.’’ A strong desire to decide for
oneself was expressed by others. When asked if his
doctor or a friend might influence his decision to
participateinastudy,thisindividualreplied:‘‘Right.
I mean, I can picture myself already telling them,
‘Okay, I’m thinking that’s something I would look
into’, and in actuality never doing it.’’
Another interviewee was asked specifically about
theinfluence of theoutreach worker forthe primary
HIVpreventionstudies,whowashighly-respectedby
many of the interviewees:
A: No, no. No, it wouldn’t make a difference in the
person.
Q: Or sometimes a doctor might ask you to
participate in the study.
A: No, I don’t think it would make a difference. I
think it could be my mother saying the same thing
and probably my answer would be the same.
Participantsexhibitedcontrolinchoosing,declin-ing or stopping participation in research situations.
Reasons for withdrawing from studies included
personal time limits, perception of physical harm
and lack of adequate information about study
procedures. Most participants viewed the decision
to participate or decline participation as their own.
Discuss ion
Participants reported a variety of influences on
decisions to participate in research, many of which
have already been noted, primarily in studies of
participation in HIV vaccine trials. In addition,
decisions about participation were characterized by
a tendency to seek information about a study;
skepticism and mistrust of research and researchers;
expectationsthatmedicalcareandmonitoringwould
be available during participation; and rejection or
discontinuationofparticipationinastudyifonewas
uneasyaboutit.Thesedataexpanduponsomeofthe
findings of previous studies in the identification of
African American attitudes, beliefs and barriers to
participatinginHIV-relatedresearchandresearchin
general.
Economically-disadvantaged African Americans
are often viewed as ‘‘vulnerable’’ research partici-pants who require increased regulatory protections
because of their presumed limited educational back-groundthatmayinterferewiththeirabilitytoprovide
informed consent; their economic position that im-plies undue susceptibility to offers of money and
healthcaretoparticipateinresearch;andtheirhistory
AIDS Care 1229
of research abuse (Stone, 2003). Participants in this
study did not demonstrate a passiveness toward
research participation that such a view of vulner-ability implies. Most participants’ desired informa-tionaboutastudyandsomeperceivedaclaimtothat
information as a condition of participating and as
acknowledgment of their contribution to the study.
Participants wanted information even if they might
notunderstanditandvoicedconcernsaboutwhether
allinformationrelatedtoastudywouldbeprovided.
Inadequate provision of information and lack of
healthcare monitoring were related to perceptions of
mistrust of research and researchers. While African
Americans’ mistrust of healthcare and research is
often attributed to the Tuskegee Syphilis Study,
Gamble (1997) notes that this mistrust is rooted in
more pervasive racism, occurring from the time of
slaverywhenAfricanAmericanswerenon-consenting
experimentalsubjects,tothepresentdayofpersisting
disparitiesinaccesstohigh-qualityhealthcare. Some
participants, familiar with clinical research, viewed
healthcare and monitoring within a study as an
expected part of research. Participants tended to
believe, rightly or wrongly, that monitoring con-trolled some of the risks of research. They appeared
less concerned about gaining access to healthcare
through participating in research than in being
monitored for adverse effects during a study, a view
that could be attributed to knowledge of the health-care ‘‘safety net’’ for the poor and availability of
federal funds for treating individuals with HIV/
AIDS.
Misunderstanding of drug abuse research could
help to foster mistrust and conspiracy theories, as
suggested by one participant’s perception of a crack
cocaine study. Procedures for the conduct of ethical
drug abuse research are well-known among investi-gators (College on Problems of Drug Dependence,
1995), but not the public. Public perceptions of HIV
and drug abuse research are areas for further
investigation.
Participants also described instances of them-selves and others exerting control by declining
participation or withdrawing from research studies.
A desire for information and the ability to control
one’sparticipationmaysuggestthatparticipantswho
are skeptical or mistrustful about aspects of a
research study may be more likely to ask for
information or to walk away from the process if
their needs are not met.
Limitations of this study are noted elsewhere
(Slomka et al., 2007). They include the potential for
selectionbiasinvolvedinrecruitingparticipantsfrom
on-goingstudiesandaresultinginabilitytogeneralize
to other populations. Participants in our study may
havebeenmoresophisticatedinregardtohealthcare
andmedicalresearchthaninothercitiesandregions
of the country. The Texas Medical Center, a large
consortium of institutions involved in healthcare,
research and education, dominates the health scene
inHouston,Texasandopportunitiestoparticipatein
research studies are available.
The recruiting of participants only for a study
mayintroducebiasbecauseparticipantsmaydifferin
important ways from non-participants. But eliciting
viewsofindividualswhochooseparticipationmaybe
valuable to enable the design of future studies that
will accommodate participant preferences and pro-mote enrollment and retention (Halpern, 2002).
Decisions to participate based on hypothetical sce-narios are generally considered to be problematic in
predicting actual research participation. However,
Halpern, Metzger, Berlin and Ubel (2001) showed
that those who were willing to participate in a
hypothetical HIV vaccine study were likely to enroll
in the actual study. Our study investigated broad
questionsofparticipants’perceptionsofresearchand
decision making surrounding participation, rather
than the specific question of willingness to partici-pate. Therefore, we explored participants’ views
whether they related to the hypothetical scenarios,
to their own experiences or to their knowledge of
others’ experiences.
Practicalmethodshavebeensuggestedforenhan-cing research participation of underserved minority
populations by addressing potential participants’
needs and concerns (Corbie-Smith, Thomas, Wil-liams, & Moody-Ayers, 1999; El-Sadr & Capps,
1992). Our study described a population of ‘‘vulner-able’’ participants who had a fairly good knowledge
oftheirneedsandrightsasresearchparticipants.Our
study also demonstrated that meanings inherent in
theprovisionofinformationandhealthcarewithina
research study relate to trust and mistrust. An
implication for health professionals in the research
setting is that information provided during the
consent process alone may be less effective in
promoting enrollment and adherence than continu-ous information and communication during a study.
Continued attention to individuals’ perceptions and
meanings associated with research decision making
will help to enhance participation of minorities in
research and enable those with HIV/AIDS to obtain
optimal benefit from participation in research.
Acknowle dgements
PartialfundingforthisstudywasprovidedbytheNational
Institute on Drug Abuse. The views presented are solely
thoseoftheauthorsanddonotnecessarilyrepresentthose
1230 J. Slomka et al.
of the National Institute on Drug Abuse or the National
Institutes of Health. We thank two anonymous reviewers
for their helpful comments. We are grateful to Ms. Elinor
A.Vontzforeditorialassistanceandtoourintervieweesfor
their participation.
Reference s
Allen, M.A., Liang, T.S., La Salvia, T., Tjugum, B.,
Gulakowski, R.J., & Murguia, M. (2005). Assessing
theattitudes,knowledgeandawarenessofHIVvaccine
researchamongadultsintheUnitedStates. Journal of
Acquired Immune Deficiency Syndromes, 40, 617
624.
Barbour, R.S. (2001). Checklists for improving rigour in
qualitativeresearch:Acaseofthetailwaggingthedog?
British Medical Journal, 322, 1115
1117.
Bird,S.T.,&Bogart,L.M.(2005).Conspiracybeliefsabout
HIV/AIDS and birth control among African Amer-icans: Implications for the prevention of HIV, other
STIs and unintended pregnancy. Journal of Social
Issues , 61, 109
126.
Bogart, L.M., & Thornburn, S. (2005). Are HIV/AIDS
conspiracy beliefs a barrier to HIV prevention among
African Americans? Journal of Acquired Immune
Deficiency Syndromes, 38, 213
218.
Buchbinder,S.P.,Metch,B.,Holte,S.E.,Scheer,S.,Coletti,
A., & Vittinghoff, E. (2004). Determinants of enroll-ment in a preventive HIV vaccine trial: Hypothetical
versusactualwillingnessandbarriers toparticipation.
Journal of Acquired Immune Deficiency Syndromes , 36,
604
612.
Center for Disease Control and Prevention. (2000). HIV/
AIDSamongracial/ethnicminoritymenwhohavesex
with men
United States, 1989
1998. Morbidity and
Mortality Weekly Report, 49(1), 4
11.
Coletti, A.S., Heagerty, P., Sheon, A.R., Gross, M.,
Koblin, B.A., Metzger, D.S., et al. for the HIVNET
VPS Protocol Team. (2003). Randomized, controlled
evaluationofaprototypeinformedconsentprocessfor
HIV vaccine efficacy trials.Journal of Acquired Im-mune Deficiency Syndromes, 32, 161
169.
College on Problems of Drug Dependence. (1995). Special
report. Human subject issues in drug abuse research.
Drug and Alcohol Dependence, 37, 167
175.
Corbie-Smith, G., Thomas, S.B., Williams, M.V., &
Moody-Ayers, S. (1999). Attitudes and beliefs of
African Americans toward participation in medical
research. Journal of General Internal Medicine, 14,537

546.
Corbie-Smith, G., Thomas, S.B., & St. George, D.M.M.
(2002).Distrust,raceandresearch. Archives of Internal
Medicine, 162, 2458
2463.
Corbie-Smith, G., Viscoli, C.M., Kernan, W.N., Brass,
L.M., Sarrel, P., & Horwitz, R.I. (2003). Influence of
race, clinical and other socio-doemographic features
ontrialparticipation.Journal of Clinical Epidemiology ,
56, 304
309.
Cunningham, C.O., Sohler,N.L., Berg,K.M., Shapiro, S.,
&Heller, D. (2006).Type ofsubstance useandaccess
to HIV-related healthcare. AIDS Patient Care and
STDs, 20, 399
407.
Djomand, G., Katzman, J., diTommaso, D., Hudgens,
M.G., Counts, G.W., Koblin, B.A., et al. (2005).
Enrollment of racial/ethnic minorities in NIAID-funded networks of HIV vaccine trials in the United
States, 1988
2002. Public Health Reports , 120, 543

548.
El-Sadr,W.,&Capps,L.(1992).Thechallengeofminority
recruitment in clinical trials for AIDS. Journal of the
American Medical Association , 267, 954
957.
Gamble, V.N. (1997). Under the shadow of Tuskegee:
African Americans and healthcare. American Journal
of Public Health, 87, 1773
1778.
Gifford,A.L.,Cunningham,W.E.,Heslin,K.C.,Andersen,
R.M., Nakazono, T., Lieu, D.K., et al. (2002).
Participation in research and access to experimental
treatments by HIV-infected patients. New England
Journal of Medicine, 346, 1372
1382.
Golub,E.T.,Purvis,L.A.,Sapun,M.,Safaeian,M.,Beyrer,
C.,Vlahov,D.,etal.(2005).Changesinwillingnessto
participate in HIV vaccine trials among HIV-negative
injection drug users. AIDS Behavior, 9, 301
309.
Halpern, S.D., Metzger, D.S., Berlin, J.A., & Ubel, P.A.
(2001). Who will enroll? Predicting participation in a
Phase II AIDS vaccine trial. Journal of Acquired
Immune Deficiency Syndromes , 27, 281
288.
Halpern,S.D.(2002).Prospectivepreferenceassessment:A
method to enhance the ethics and efficiency of
randomized controlled trials. Controlled Clinical
Trials, 23, 274
288.
Hsieh, H., & Shannon, S.E. (2005). Three approaches to
qualitative content analysis. Qualitative Health Re-search , 15, 1277
1288.
Koblin, B.A., Heagerty, P., Sheon, A., Buchbinder, S.,
Celum, C., Douglas, J.M., et al. (1998). Readiness of
high-riskpopulationsintheHIVNetworkforPreven-tionTrialstoparticipateinHIVvaccineefficacytrials
inthe United States. AIDS, 12, 785
793.
Madge, S., Mocroft, A., Wilson, D., Youle, M., Lipman,
M.C.,Phillips,A.,etal.(2000).Participationinclinical
studiesamongpatientsinfectedwithHIV-1inasingle
treatmentcentreover12years. HIV Medicine, 1,212

218.
Meyers, K., Metzger, D.S., Navaline, H., Woody,G.E., &
McLellan,A.T.(1994).Vaccinetrials:Willintravenous
drug users enroll? American Journal of Public Health,
84, 761
766.
Mills,E.,Cooper,C.,Guyett,G.,Gilchrist,A.,Rachlis,B.,
Sulway,C.,etal.(2004).Barrierstoparticipatinginan
HIV vaccine trial: A systematic review.AIDS, 18,
2235
2242.
Mueller, M.R. (2004). Clinical, technical and social con-tingenciesandthedecisions ofadultswithHIV/AIDS
toenrollinclinicaltrials. Qualitative Health Research ,
14, 704
713.
Newman,P.A.,Duan,N.,Roberts,K.J.,Seiden,D.,Rudy,
E.T., Swendeman, D., et al. (2006). HIV vaccine trial
participation among ethnic minority communities.
Barriers, motivators and implications for recruitment.
AIDS Care 1231
Journal of Acquired Immune Deficiency Syndromes , 41,
210
217.
Patton, M.Q. (2002). Qualitative research and evaluation
methods(3rd ed.). Thousand Oaks, CA: Sage.
Priddy, F.H., Cheng, A.C., Salazar, L.F., & Frew, P.M.
(2006).Racialandethnicdifferencesinknowledgeand
willingness to participate in HIV vaccine trials in an
urban population in the Southeastern US. Interna-tional Journal of STD & AIDS, 17,99
102.
Roberts, K.J., Newman, P.A., Duan, N., & Rudy, E.T.
(2005). HIV vaccine knowledge and beliefs among
communities at elevated risk: Conspiracies, questions
and confusion. Journal of the National Medical Asso-ciation , 97, 1662
1671.
Ross, M.W.,& Jeffords, K. (1994). Reasonsfor entry into
and understanding of HIV/AIDS clinical trials: A
preliminary study. AIDS Care , 6,77
82.
Ross, M.W., Essien, E.J., & Torres, I. (2006). Conspiracy
beliefs about the origin of HIV/AIDS in four racial/
ethnic groups. Journal of Acquired Immune Deficiency
Syndromes, 41, 342
344.
Sengupta, S., Strauss, R.P., DeVellis, R., Quinn, S.C.,
DeVellis, B., & Ware, W.B. (2000). Factors affecting
African-American participation in AIDS research.
Journal of Acquired Immune Deficiency Syndromes,
24, 275
284.
Shavers, V.L., Lynch, C.F., & Burmeister, L.F. (2002).
Racial differences in factors that influence the will-ingness to participate in medical research studies.
Annals of Epidemiology, 12, 248
256.
Shavers-Hornaday, V.L., & Lynch, C.F. (1997). Why are
African Americans under-represented in medical re-searchstudies?Impedimentstoparticipation. Ethnicity
& Health , 2,31
45.
Slomka, J., McCurdy, S., Ratliff, E.A., Timpson, S., &
Williams, M.L. (2007). Perceptions of financial pay-ment for research participation among African-Amer-ican drug users in HIV studies. Journal of General
Internal Medicine , 22, 1403
1409.
Slomka, J., Ratliff, E.A., McCurdy, S., Timpson, S.,
Williams, M.L. (in press). Perceptions of risk in
research participation among underserved minority
drug users. Substance Use and Misuse.
Stone,T.H.(2003).Theinvisiblevulnerable:Theeconomic-ally and educationally disadvantaged participants of
clinical research. Journal of Law, Medicine & Ethics,
31, 149
153.
Stone, V.E., Mauch, M.Y., Steger, K., Janas, S.F., &
Craven, D.E. (1997). Race, gender, drug use and
participation in AIDS clinical trials. Lessions from a
municipal hospital cohort.Journal of General Internal
Medicine, 12, 150
157.
Stone,V.E.,Mauch,M.Y.,&Steger,K.A.(1998).Provider
attitudes regarding participation of women and per-sons of color in AIDS clinical trials. Journal of
Acquired Immune Deficiency Syndromes, 19, 245
253.
Strauss, R.P., Sengupta, S., Kegeles, S., McLellan, E.,
Metzger, D., Eyre, S., et al. (2001). Willingness to
volunteer in future preventive HIV vaccine trials:
Issues and perspectives from three US communities.
Journal of Acquired Immune Deficiency Syndromes , 26,
63
71.
Sullivan, P.S., McNaghten, A.D., Begley, E., Hutchinson,
A.,&Cargill,V.A.(2007).Enrollmentofracial/ethnic
minorities and women with HIV in clinical research
studies of HIV medicines. Journal of the National
Medical Association, 99, 242
250.
Vosvick, M., Gore-Felton, C., Ashton, E., Koopman, C.,
Fluery, T., Israelski, D., et al. (2004). Sleep distur-bances among HIV-positive adults. The role of pain,
stress and social support. Journal of Psychosomatic
Research , 57, 459
463.
Wendler, D., Kington, R., Madans, J., Van Wye, G.,
Christ-Schmidt, H., Pratt, L.A., et al. (2006). Are
racialandethnicminoritieslesswillingtoparticipatein
health research?Public Library of Science Medicine,
3(2), e19.
1232 J. Slomka et al.