African Americans bear a greater disease burden from HIV/AIDS

African Americans bear a greater disease burden from  HIV/AIDS Topic: Article Critique Order Description E-textbook information login: www.coursesmart.com Email address: [email protected] Password: SJunior 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 3045 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 2253 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 1316 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, 617624. Barbour, R.S. (2001). 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