Research risks and benefits

Arscott, K., Dagnan, D., & Kroese, B. S. (1998). Consent to psychological research by people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 11(1), 77-83.
Informed consent (adults), Voluntariness and self-efficacy, Research risks and benefits,Adults with neurological disorders, Clinical trials, Community organizations, Educational institutions, EnglandQuantitative (QT)

Barnett, P. G., Hall, S. M., Haug, N. A., Sorensen, J. L., & Wong, W. (2008). Effect of incentives for medication adherence on health care use and costs in methadone patients with HIV. Drug Alcohol Dependence, 1, 115-121.
Research risks and benefitsPeople living with HIVPeople who inject drugsClinical trialsHealth-care facilitiesUnited StatesQuantitative (QT)

Basta, T. B., Stambaugh, T., & Fisher, C. B. (2014). Efficacy of an educational intervention to increase consent for HIV testing in rural Appalachia. Ethics and Behavior, 25 (2), 129-145.
Confidentiality and privacyInformed consent (adults)Research risks and benefitsPeople at risk for HIVPeople at risk for or with substance use addictionsClinical trials, Health-care facilities, United States 

Bell, K., & Salmon, A. (2011). What women who use drugs have to say about ethical research: findings of an exploratory qualitative study.  Journal of empirical research on human research ethics, 6, 84-98.
Research risks and benefitsResearch trust and mistrustPeople at risk for or with substance abuse addictionsPeople who inject drugsClinical trials, Survey researchEthics educationCommunity organizationsCanadaQualitative (QL)

Broaddus, M. R., Marsch, L. A., & Fisher, C. B. (2015). Risks and benefits of text-message-delivered and small-group-delivered sexual health interventions among African American women in the Midwestern United States. Ethics and Behavior, 25 (2), 146-168.
Confidentiality and privacy, Research risks and benefitsStigmaPeople at risk for HIV, People at risk for or with other STIs, Clinical trialsSurvey researchUnited StatesQuantitative (QT)

Brooks, R. A., Newman, P. A., Duan, N., & Ortiz, D. J. (2007). HIV vaccine trial preparedness among Spanish-speaking Latinos in the US. AIDS Care, 19(1), 52-58.
Research risks and benefits, Research trust and mistrust, Stigma, People at risk for HIV, Clinical trials, Community organizations, Health-care facilities, United States, Qualitative (QL)

Brown, E. J. & Hill, M. A. (2005). Perceptions of HIV risks and prevention strategies by rural and small city African Americans who use cocaine: Views from the inside. Issues in Mental Health Nursing, 26, 359-377.
Multicultural competence, Research risks and benefits, People at risk for HIV, People at risk for or with substance use addictions, Community-engaged research, Community organizations, Health-care facilities, United States, Qualitative (QL)

Chaisson, L. H., Kass, N. E., Chengeta, B., Mathebula, U., & Samandari, T. (2011). Repeated assessments of informed consent comprehension among HIV-infected participants of a three-year clinical trial in Botswana. PloS one,6(10), e22696.
Informed consent (adults), Multicultural competence, Research risks and benefits, Clinical trials, Government agencies, Health-care facilities, BotswanaQuantitative (QT)

Chiu, C. J., Menacho, L., & Young, S. D. (2014). The association between age and ethics-related issues in using social media for HIV prevention in Peru. Ethics and Behavior, 26 (2), 99-109.
Clinical efficacy, Research risks and benefitsPeople at risk for HIV, Online and social media research, Survey researchCommunity organizationsPeru

Couper, M. P., Singer, E., Conrad, F. G., & Groves, R. M. (2008). Risk of disclosure, perceptions of risk, and concerns about privacy and confidentiality as factors in survey participation. Journal of official statistics, 24(2), 255-275.
Confidentiality and privacy, Research risks and benefits, Research trust and mistrust, Adults (other), Survey research, United StatesQuantitative (QT)

DuBois, J. M., O’Leary, C. C., & Cottler, L. B. (2009).The attitudes of females in drug court toward additional safeguards in HIV prevention research. Prevention Science, 10(4), 345-352.
Informed consent (adults), Research risks and benefits, Adults (other), Incarcerated, detained, or previously incarcerated individuals, People at risk for HIV, People at risk for or with other STIs, People at risk for or with other substance abuse addictions, People who inject drugs, Community-engaged research, Prisons, United StatesQualitative (QL)

El-Wakeel, H., Taylor, G. J., & Tate, J. J. T. (2006). What do patients really want to know in an informed consent procedure? A questionnaire-based survey of patients in the Bath area, UK. Journal of medical ethics, 32(10), 612-616.
Informed consent (adults), Research risks and benefits, Adults (other), Clinical trialsSurvey research, Health-care facilities, EnglandQuantitative (QT)

Ensign, J., & Ammerman, S. (2008). Ethical issues in research with homeless youths. Journal Of Advanced Nursing, 62(3), 365-372.
Assent and self-consent (children and adolescents), Investigator practices and perspectives, Research risks and benefits, Children, Investigators, Research staff, Survey research, Educational institutions, United States, Mixed methods (MM)
*Questionnaire available by request.

Festinger, D. S., Arabia, P. L., Croft, J. R., Dugosh, K. L., & Marlowe, D. B. (2008). Higher magnitude cash payments improve research follow-up rates without increasing drug use or perceived coercion.  Drug Alcohol Dependence, 96 (1-2), 128-135.
Research risks and benefitsVoluntariness and self-efficacyPeople at risk for HIV, People at risk for or with other STIs, People at risk for or with other substance abuse addictionsPeople who inject drugs, Clinical trials, Health-care facilitiesUnited StatesQuantitative (QT)

Fisher, C. B. (2003). Adolescent and Parent Perspectives on Ethical Issues in Youth Drug Use and Suicide Survey Research. Ethics and Behavior, 13(4), 302-331.
Assent and self-consent (children and adolescents), Confidentiality and privacy, Informed consent (adults), Research risks and benefits, Parents, Adolescents, Survey researchEducational institutions, United StatesQuantitative (QT)

Fisher, C. B., & Fyrberg, D. (1994). Participant partners: College students weigh the costs and benefits of deceptive research. American Psychologist,49(5), 417.
Deception, Research risks and benefits, Research trust and mistrust, College students and young adults, Survey research, Educational institutions, United StatesMixed methods (MM)

Flynn, K. E., Weinfurt, K. P., Seils, D. M., Lin, L., Burnett, C. B., Schulman, K. A., & Meropol, N. J. (2008). Decisional conflict among patients who accept or decline participation in phase I oncology studies. Journal of empirical research on human research ethics: JERHRE, 3(3), 69-77.
Research risks and benefits, Voluntariness and self-efficacy, Adults with other health problems, Clinical trials, Health-care facilities, United StatesQuantitative (QT)

Fry, C. & Dwyer, R. (2001). For love or money? An exploratory study of why injecting drug users participate in research. Addiction, 96, 1319-1325.
Research risks and benefitsPeople at risk for or with other substance abuse addictionsPeople who inject drugsSurvey researchCommunity organizations, Australia, Mixed methods (MM)

Fuchs, J., Durham, M., McLellan-Lemal, E., Vittinghoff, E., Colfax, G., Gurwith, M., & Buchbinder S. (2007). Negative social impacts among volunteers in an HIV vaccine efficacy trial. Journal of Acquired Immune Deficiency Syndromes, I, 362-368.
Research risks and benefits, Stigma, People at risk for HIV, Clinical trials, Health-care facilities, United States, Quantitative (QT)

Guadamuz, T. E., Goldsamt, L. A., & Boonmongkon, P. (2014). Consent challenges for participation of young men who have sex with men in HIV prevention research in Thailand. Ethics and Behavior, 25 (2), 180-195.
Assent and self-consent (children and adolescents), Informed consent (adults)Research risks and benefitsStigmaPeople at risk for HIVSexual and gender minoritiesThailandQualitative (QL)

Hickman, N. J., Prochaska, J.J., & Dunn, L. B. (2011). Screening for understanding of research in the inpatient psychiatry setting. Journal of Empirical Research on Human Research Ethics, 6(3), 65-72.
Informed consent (adults), Research risks and benefits, Adults with mental health disorders, Clinical trials, Health-care facilities, United States, Quantitative (QT)

Kassam-Adams, N. Newman, E. (2005). Child and parent reactions to participation in clinical research. General Hospital Psychiatry, 27(1), 29-35.
Assent and self-consent (children and adolescents), Research risks and benefits, Research trust and mistrust, Children, Parents, Clinical trials, Survey research, Health-care facilitiesUnited States, Qualitative (QL)

Kim, SYH, Holloway, R., Frank, S., Wilson, R., Kieburtz, K. (2008). Trust in early phase research: therapeutic optimism and protective pessimism. Medicine, Health Care, and Philosophy. 11(4), 393-401.
Informed consent (adults), IRB practices and perspectives, Research risks and benefits, Research trust and mistrust, Therapeutic misconception, IRB members, Clinical trials, Survey research, United States, Qualitative (QL)

Kokolo, M. B., et al. (2011). HIV Pre-Exposure Prophylaxis (PrEP) – A Quantitative Ethics Appraisal. PLoS ONE 6(8): e22497.
Informed consent (adults), Investigator practices and perspectives, Research risks and benefits, Investigators, Research staff, Clinical trials, Health-care facilitiesCanada, Quantitative (QT)

Koocher, G. P. (2002). Using the CABLES model to assess and minimize risk in research: control group hazards. Ethics & behavior, 12(1), 75-86.
Randomization, Research risks and benefits, Ethics education, United States

Lairumbi, G. M., Michael, P., Fitzpatrick, R., & English, M. C. (2012). Forms of benefit sharing in global health research undertaken in resource poor settings: A qualitative study of stakeholders views in Kenya. Philosophy, Ethics, and Humanities in Medicine, 7(7).
Research risks and benefits, Adults (other), Community Advisory Board, Investigators, IRB members, Policy makers, Clinical trials, Health-care facilities, South Africa, Qualitative (QL)

Lakes, K. D., Vaughan, E., Jones, M., Burke, W., Baker, D., & Swanson, J. M. (2012). Diverse perceptions of the informed consent process: Implications for the recruitment and participation of diverse communities in the National Childrens Study. American Journal of Community Psychology, 49, 215-232.
Assent and self-consent (children and adolescents), Informed consent (adults), Multicultural competence, Research risks and benefits, Children, Adults (other), United States, Qualitative (QL)

Lazovski, J., Losso, M., Krohmal, B., Emanuel, E. Z., Grady, C., & Wendler, D. (2009). Benefits and burdens of participation in a longitudinal clinical trial. Journal of Empirical Research on Human Research Ethics, 4(3), 89-97.
Research risks and benefits, People living with HIV, Clinical trials, Health-care facilities, Argentina, Brazil, Thailand, Quantitative (QT)

Newman, E., Willard, T., Sinclair, R., & Kaloupek, D. (2001). Empirically supported ethical research practice: The costs and benefits of research from the participants’ view. Accountability in research, 8(4), 309-329.
Informed consent (adults), Research risks and benefits, College students and young adults,Clinical trials, Educational institutions, United StatesQuantitative (QT)

Oliver, J. M., Slashinski, M. J., Wang, T., Kelly, P. A., Hilsenbeck, S. G., & McGuire, A. L. (2011). Balancing the risks and benefits of genomic data sharing: genome research participants’ perspectives. Public Health Genomics, 15(2), 106-114.
Confidentiality and privacy, Informed consent (adults), Research risks and benefits,Research trust and mistrust, Adults (other), Parents, Clinical trials, Health-care facilities, United StatesMixed methods (MM)

Oransky, M., Fisher, C. B., Mahadevan, M., & Singer, M. (2009). Barriers and opportunities for recruitment for nonintervention studies on HIV risk: Perspectives of street drug users. Substance Use& Misuse, 44, 1642-1659.
Research risks and benefitsResearch trust and mistrust, StigmaPeople at risk for HIV, People who inject drugsCommunity organizationsUnited StatesQualitative (QL)

Ott, M. A., Rosenberger, J. G., & Fortenberry, J. D. (2010). Parental permission and perceived research benefits in adolescent STI research.  Journal of empirical research on human research ethics: JERHRE, 5(2), 57-64.
Assent and self-consent (children and adolescents), Informed consent (adults), Research risks and benefits, Adolescents, Parents, People at risk for HIV, Clinical trials, Community organizations, Health-care facilities, United StatesQualitative (QL)

Pearson, C. R., Parker, M., Fisher, C. B., & Moreno, C. (2014). Capacity Building from the Inside Out: Development and Evaluation of a CITI Ethics Certification Training Module for American Indian and Alaska Native Community Researchers. Journal Of Empirical Research On Human Research Ethics, 9(1), 46-57.
Multicultural competence, Research risks and benefits, Adults (other), Community-engaged research, Ethics education, Community organizations, United States, Mixed Methods (MM)

Reed, J. L., Thistlethwaite, J. M., & Huppert, J. S. (2007). STI research: Recruiting an unbiased sample. Journal of Adolescent Health, 41, 14-18.
Assent and self-consent (children and adolescents), Research risks and benefits, Adolescents, People at risk for HIV, People at risk for or with other STIs, Health-care facilities, United States, Quantitative (QT)

Roessler, B. J., Steneck, N. H., & Connally, L. (2015). The MICHR genomic DNA BioLibrary: an empirical study of the ethics of biorepository development. Journal of Empirical Research on Human Research Ethics, 10 (1), 37-48.
Informed consent (adults)Research risks and benefitsAdults (other)Health-care facilitiesUnited StatesQuantitative (QT) 

Scott, G. (2008). They got their program, and I got mine: A cautionary tale concerning the ethical implications of using respondent-driven sampling to study injection drug users. International Journal of Drug Policy, 19, 42-51.
Randomization, Research risks and benefits, People at risk for HIV, People who inject drugs, United States, Qualitative (QL)

Shah, S., Whittle, A., Wilfond, B., Gensler, G., & Wendler, D. (2004). How do institutional review boards apply the federal risk and benefit standards for pediatric research?. JAMA: the journal of the American Medical Association,291(4), 476-482.
IRB practices and perspectives, Research risks and benefits, IRB members, Clinical trials,Survey research, Health-care facilities, United StatesQuantitative (QT)

Singer, E., & Couper, M. P. (2008). Do incentives exert undue influence on survey participation? Experimental evidence. Journal of empirical research on human research ethics: JERHRE, 3(3), 49-56.
Research risks and benefits, Adults (other), Online and social media research, Online web panel, United StatesQuantitative (QT)

Slomka, J., McCurdy, S., Ratliff, E. A., Timpson, S., & Williams, M. L. (2007). Perceptions of financial payment for research participation among African-American drug users in HIV studies. Journal of General Internal Medicine, 22, 1403-1409. Stirley, C. L. W., Callahan, C., & Cottler, L. B. (2008). Enrolling, retaining, and benefiting out-of-treatment drug users in intervention research. Journal of Empirical Research on Human Research Ethics, 3(3), 19-25.
Research risks and benefits, People at risk for HIV, People who inject drugs, Survey research, Neighborhoods, United States, Qualitative (QL)

Slomka, J., Ratliff, E. A., McCurdy, S. A., Timpson, S., & Williams, M.L. (2008). Decisions to participate in research: Views of underserved minority drug users with or at risk for HIV. AIDS Care, 20(10), 1224-1232.
Research risks and benefits, Voluntariness and self-efficacy, People at risk for HIV, People who inject drugs, Clinical trials, Health-care facilities, United States, Qualitative (QL)

Slomka, J., Ratliff, E. A., McCurdy, S., Timpson, S., & Williams, M. L. (2008). Perceptions of Risk in Research Participation Among Underserved Minority Drug Users. Substance Use & Misuse, 43(11), 1643-1655.
Research risks and benefits, People at risk for HIV, People who inject drugs, Clinical trials,Survey research, Community organizations, United StatesQualitative (QL)

 

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