Informed consent (adults)

Abdool Karim, Q., Abdool Karim, S. S., Coovadia, H. M., & Susser, M. (1998). Informed consent for HIV testing in a South
African hospital: Is it truly informed and truly voluntary?
. American Journal of Public Health, 88(4), 637-640.
Informed consent (adults), Voluntariness and self-efficacy, Adults (other), People living with HIV, People at risk for or with other STIs, Survey research, Health-care facilities, South AfricaQuantitative (QT)

Agnarson, A. M., et al. (2013). Antiretroviral Treatment Knowledge and Stigma – Implications for Programs and HIV Treatment Interventions in Rural Tanzanian Populations. PLoS ONE 8(1): e53993.
Informed consent (adults), Stigma, Adults (other), People at risk for HIV, People at risk for or with other STIs, People living with HIV, Survey research, Community-engaged research,Community organizations, TanzaniaQuantitative (QT)

Akkad, A., Jackson, C., Kenyon, S., Dixon-Woods, M., Taub, N., & Habiba, M. (2006). Patients’ perceptions of written consent: questionnaire study. BMJ: British Medical Journal, 333(7567), 528.
Informed consent (adults), Adults (other), Survey research, Health-care facilitiesEnglandQuantitative (QT)

Appelbaum, P. S., Lidz, C. W., & Klitzman, R. (2009). Voluntariness of consent to research: A preliminary empirical investigation. IRB: Ethics & Human Research, Nov. –Dec. 2009, 10-18.
Informed consent (adults), Voluntariness and self-efficacy, United States

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 benefitsAdults with neurological disorders, Clinical trials, Community organizations, Educational institutions, EnglandQuantitative (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 

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)

Couper, M. P., & Singer, E. (2009). The role of numeracy in informed consent for surveys. Journal of empirical research on human research ethics: JERHRE,4(4), 17.
Confidentiality and privacy, Informed consent (adults), Adults (other), Online and social media research, Online web panel, United StatesQuantitative (QT)

Diviak, K. R., Curry, S. J., Emery, S. L., & Mermelstein, R. J. (2004). Human participants challenges in youth tobacco cessation research: researchers’ perspectives. Ethics & Behavior, 14(4), 321-334.
Assent and self-consent (children and adolescents), Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Adolescents, Investigators,People at risk for or with substance abuse addictions, Research staff, Clinical trials,Educational institutions, United StatesQualitative (QL)

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)

Eldridge, G. D., Robinson, R., Corey, S., Brems, C., & Johnson, M. E. (2012). Ethical challenges in conducting HIV/AIDS research in correctional settings. Journal of Correctional Health Care, 18(4), 309-318.
Confidentiality and privacy, Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Investigators, IRB members, Research staff, Incarcerated, detained, or previously incarcerated individuals, People at risk for HIV, Prisons, United States, Qualitative (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)

Festinger, D. S., Ratanadilok, K., Marlowe, D. B., Dugosh, K. L., & Patapis, N. S. (2007). Neuropsychological functioning and recall of research consent information among drug court clients. Ethics & Behavior, 17(2), 163-186.
Informed consent (adults), People at risk for or with substance use addictions, Incarcerated, detained, or previously incarcerated individuals, United States, Quantitative (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. (2010). Enhancing HIV Vaccine Trial Consent Preparedness Among Street Drug Users. Journal of Empirical Research on Human Research Ethics, 5 (2), 65-80.
Informed consent (adults), Research trust and mistrust, Adults (other), People at risk for HIV, People at risk for or with other STIs, People who inject drugs, Clinical trialsNeighborhoods, United StatesMixed methods (MM)

Fisher, C., Cea, C., Davidson, P., & Fried, A. (2006). Capacity of persons with mental retardation to consent to participate in randomized clinical trials. American Journal of Psychiatry, 163(10), 1813-1820.
Informed consent (adults), Adults with neurological disorders, Clinical trials, Community organizations, United StatesQuantitative (QT)

Grisso TH, Appelbaum PS: MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Sarasota, Fla, Professional Resource Press, 2001.
Informed consent (adults), Clinical trials

Groves, A. K., Maman, S., Msomi, S., Makhanya, N., & Moodley, D. (2010). The complexity of consent: Women’s experiences testing for HIV at an antenatal clinical in Durban, South Africa. AIDS Care, 22(5), 538-544.
Informed consent (adults), Voluntariness and self-efficacy, People at risk for HIV, Health-care facilities, South Africa, Qualitative (QL)

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)

Hazen, R. A., Eder, M., Drotar, D., Zyzanski, S., Reynolds, A. E., Reynolds, C. P., …& Noll, R. B. (2010). A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia. Pediatric blood & cancer, 55(1), 113-118.
Informed consent (adults), Parents, Clinical trials, Health-care facilities, United StatesQuantitative (QT)

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)

Jeste, D.V. et al (2007). A New Brief Instrument for Assessing Decisional Capacity for Clinical Research. Arch Gen Psychiatry, 64(8), 966-974.
Informed consent (adults), Adults with neurological disorders, Clinical trials, Health-care facilities, United StatesQuantitative (QT)

Joffe, S., Cook, E. F., Cleary, P. D., Clark, J. W., & Weeks, J. C. (2001). Quality of informed consent: a new measure of understanding among research subjects. Journal of the National Cancer Institute, 93(2), 139-147.
Informed consent (adults), Adults with other health problems, Clinical trials, Health-care facilities, United States, Quantitative (QT)

Joffe, S., Cook, E. F., Cleary, P. D., Clark, J. W., & Weeks, J. C. (2001). Quality of informed consent in cancer clinical trials: a cross-sectional survey. Lancet, 358(9295), 1772-1777.
Informed consent (adults), Therapeutic misconception, Adults with health problems, Clinical trials, Health-care facilities, United StatesQuantitative (QT)

Kiluk, B. D., Nich, C., & Carroll, K. M. (2010).Neurocognitive Indicators Predict Results of an Informed-Consent Quiz Among Substance-Dependent Treatment Seekers Entering a Randomized Clinical Trial. Journal of studies on alcohol and drugs, 71(5), 704-712.
Informed consent (adults), People at risk for or with substance use addictions, Clinical trials, Community organizations, United StatesQuantitative (QT)

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)

Kimberly, M. B., Hoehn, K. S., Feudtner, C., Nelson, R. M., & Schreiner, M. (2006). Variation in standards of research compensation and child assent practices: a comparison of 69 institutional review board–approved informed permission and assent forms for 3 multicenter pediatric clinical trials. Pediatrics, 117(5), 1706-1711.
Assent and self-consent (children and adolescents), Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Investigators, IRB membersChildren, Clinical trials, United States, Quantitative (QT)

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 facilitiesCanadaQuantitative (QT)

Kyaddondo, D., Wanyenze, R., Kinsman, J., & Hardon, A. (2012). Home-based HIV counseling and testing: client experiences and perceptions in Eastern Uganda. BMC Public Health, 12966.
Confidentiality and privacy, Informed consent (adults)People at risk for HIV, People at risk for or with other STIsCommunity-engaged researchSurvey researchSouth AfricaMixed Methods (MM)

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)

Länsimies‐Antikainen, H., Laitinen, T., Rauramaa, R., & Pietilä, A. M. (2010). Evaluation of informed consent in health research: a questionnaire survey. Scandinavian Journal of Caring Sciences, 24(1), 56-64.
Informed consent (adults), Adults (other), Clinical trials, Health-care facilitiesFinlandQuantitative (QT)

Lindegger, G., Milford, C., Slack, C., Quayle, M., Xaba, X., & Vardas, E. (2006). Beyond the checklist: Assessing understanding for HIV vaccine trial participation in South Africa. Journal of Acquired Immune Deficiency Syndromes, 43, 560-566.
Informed consent (adults), People at risk for HIV, Clinical trials, Health-care facilities, South Africa, Mixed Methods (MM)

Lynöe, N., Sandlund, M., Dahlqvist, G., & Jacobsson, L. (1991). Informed consent: study of quality of information given to participants in a clinical trial. BMJ: British Medical Journal, 303(6803), 610-613.
Informed consent (adults), Voluntariness and self-efficacy, Adults with other health problems, Clinical trials, Health-care facilities, Sweden, Quantitative (QT) 

Madhivanan, P., Krupp, K., Kulkarni, V., Kulkarni, S., Vaidya, N., Shaheen, R. Philpott, S. & Fisher, C. B. (2014). HIV testing among pregnant women living with HIV in India: are private healthcare providers routinely violating women’s human rights? BMC International Health and Human Rights, 14(7).
Confidentiality and privacy, Informed consent (adults), People living with HIV, Clinical trials, Community organizations, Health-care facilities, India, Qualitative (QL)

Miller, C. K., O’Donnell, D. C., Searight, H. R., & Barbarash, R. A. (1996). The Deaconess Informed Consent Comprehension Test: an assessment tool for clinical research subjects. Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy, 16(5), 872-878.
Informed consent (adults), Adults with other health problems, Clinical trials, Health-care facilities, United StatesQuantitative (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 adultsClinical trials, Educational institutions, United StatesQuantitative (QT)

Obermeyer, C., Verhulst, C., & Asmar, K. (2014). Could you have said no? A mixed-methods investigation of consent to HIV tests in four African countries. Journal Of The International AIDS Society, 1718898.
Informed consent (adults), Voluntariness and self-efficacy, People at risk for HIV, People at risk for or with other STIs, Survey research, Health-care facilities, South AfricaMixed Methods (MM)

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 benefitsResearch trust and mistrust, Adults (other), Parents, Clinical trials, Health-care facilities, United StatesMixed methods (MM)

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)

Palmer, B. W., Cassidy, E. L., Dunn, L. B., Spira, A. P., & Sheikh, J. I. (2008). Effective use of consent forms and interactive questions in the consent process. IRB: Ethics and Human Research, 30(2), 8-12.
Informed consent (adults), Voluntariness and self-efficacy, Adults with other health problems, Clinical trials, Health-care facilities, United StatesQualitative (QL)

Rautenbach, C., Lindegger, G., Slack, C., Wallace, M., & Newman, P. (2015). I’m positive, but I’m negative: competing voices in informed consent and implications for HIV vaccine trials. Journal of Empirical Research on Human Research Ethics, 10 (2), 151-156.
Informed consent (adults)People living with HIVClinical trialsHealth-care facilitiesSouth AfricaQualitative (QL)

Roberts, L. W., Geppert, C., McCarty, T., & Obenshain, S. S. (2003). Evaluating medical students skills in obtaining informed consent for HIV testing. Journal of General Internal Medicine, 18, 112-119.
Informed consent (adults), College students and young adults, People at risk for HIV, People at risk for or with other STIs, Educational institutions, United States, Quantitative (QT)

Roberts, L. W., Warner, T. D., Brody, J. L., Roberts, B., Lauriello, J., & Lyketsos,C. (2002). Patient and psychiatrist ratings of hypothetical schizophrenia research protocols: assessment of harm potential and factors influencing participation decisions. American Journal of Psychiatry, 159(4), 573-584.
Informed consent (adults), Adults (other), Adults with neurological disorders, Clinical trialsHealth-care facilities, United StatesMixed methods (MM)

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) 

Senn, C. Y., & Desmarais, S. (2006). A new wrinkle on a old concern: Are the new ethics review requirements for explicit warnings in consent forms affecting the results of sexuality. Canadian Journal of Human Sexuality.
Confidentiality and privacy, Informed consent (adults), College students and young adults,Clinical trials, Survey research, Educational institutionsCanadaMixed methods (MM)

Simes, R. J., Tattersall, M. H., Coates, A., Raghavan, D., Solomon, H. J., & Smartt, H. (1986). Randomised comparison of procedures for obtaining informed consent in clinical trials of treatment for cancer. British medical journal (Clinical research ed.), 293(6554), 1065.
Informed consent (adults), Randomization, Adults with other health problems, Clinical trialsHealth-care facilities, Australia, Quantitative (QT)

Sugarman, J., Corneli, A., Donnell, D., Liu, T., Rose, S., Celentano, D., & … Metzger, D. (2011). Are there adverse consequences of quizzing during informed consent for HIV research?. Journal Of Medical Ethics, 37(11), 693-697.
Informed consent (adults), People at risk for HIV, People who inject drugs, Clinical trialsHealth-care facilities, China, ThailandQuantitative (QT)

Willison, D. J., Keshavjee, K., Nair, K., Goldsmith, C., & Holbrook, A. M. (2003). Patients’ consent preferences for research uses of information in electronic medical records: interview and survey data. Bmj, 326(7385), 373.
Confidentiality and privacy, Informed consent (adults), Adult (other), Survey research,Health-care facilities, CanadaMixed methods (MM)

Wirshing, D. A., Wirshing, W. C., Marder, S. R., Liberman, R. P., & Mintz, J. (1998). Informed consent: assessment of comprehension. American Journal of Psychiatry, 155(11), 1508-1511.
Informed consent (adults), Adults with neurological disorders, Health-care facilities, United StatesQuantitative (QT)

Vallely, A., Lees, S., Shagi, C., Kasindi, S., Soteli, S., Kavit, N., Hayes, R. J. (2010). How informed is consent in vulnerable populations? Experience using a continuous consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania. BMC Medical Ethics, 11(10), doi: 10.1186/1472-6939-11-10.
Informed consent (adults), People at risk for HIV, Clinical trials, Community organizations, Tanzania, Qualitative (QL)

Vreeman, R., Kamaara, E., Kamanda, A., Ayuku, D., Nyandiko, W., Atwoli, L., & … Braitstein, P. (2012). A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya. BMC Medical Ethics, 1323.
Informed consent (adults), Adults (other)Community Advisory Board, Community-engaged research, Community organizations, Kenya, Qualitative (QL)

Yessis, J. L., et al (2012). Development of a Research Participants’ Perception Survey to Improve Clinical Research. CTS Journal, 5(6): 452-460.
Informed consent (adults), Investigator practices and perspectives, Investigators, Adults (other), Clinical trials, Educational institutions, CanadaQuantitative (QT)

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