Research Ethics Scales and Measures

Evidence-Based Research Ethics

The Fordham University Center for Ethics Education in partnership with the HIV Prevention Research Ethics Training Institute provides continuously-updated evidence-based research ethics resources for investigators who wish to use scales and measures to study all aspects of research ethics, not limited to HIV prevention. Below you will find an extensive bibliography on quantitative approaches to research on research ethics.

Search by content area keywords
Ethical Practices and Perspectives: Assent and self-consent (children and adolescents), Clinical efficacy, Community Advisory Board practices, Confidentiality and privacy, Deception, Informed consent (adults), Investigator practices and perspectives, IRB practices and perspectives, Multicultural competence, Randomization, Research misconduct, Research risks and benefits, Research trust and mistrust, Stigma, Therapeutic misconception, Voluntariness and self-efficacy

Populations: Adolescents, Adults (immigrants), Adults (other)Adults with mental health disorders, Adults with neurological disorders, Adults with other health problems, Children, College students and young adults, Community Advisory Board, Government officials and staff, Incarcerated, detained, or previously incarcerated individuals, Investigators, IRB members, Parents, People at risk for HIV, People at risk for or with other STIs, People at risk for or with substance use addictions, People involved in sex work, People living with HIV, People who inject drugs, Policy makersResearch staff, Sexual and gender minorities, Victims of interpersonal violence

Research Methods Examined: Clinical trials, Community-engaged research, Ethics education, MultimediaOnline and social media research, Survey research

Research Context: Community organizations, Educational institutions, Government agencies, Health-care facilities, Neighborhoods, Online web panel, Prisons

Geographic Region: ArgentinaAustralia, BoliviaBotswana, BrazilCanada, China, Cyprus, Denmark, England, EstoniaFinland, France, GuatemalaIndiaKenyaPeru, Puerto RicoSouth Africa, Sweden, Tanzania, Thailand, TurkeyUganda, Ukraine, United States

Search by measure keywords
Mixed Methods (MM), Qualitative (QL), Quantitative (QT) 

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 facilities, EnglandQuantitative (QT)

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)

Ashcraft, M. H., & Krause, J. A. (2007). Social and behavioral researchers’ experiences with their IRBs. Ethics & Behavior, 17(1), 1-17.
Investigator practices and perspectives, IRB practices and perspectives, Investigators, Research staff, Survey research, Educational institutions, United StatesMixed methods (MM)

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 

Bieschke, K. J., Bishop, R. M., & Garcia, V. L. (1996). The utility of the research self-efficacy scale. Journal of Career Assessment, 4, 59-75.
Investigator practices and perspectives, Voluntariness and self-efficacyCollege students and young adults, Ethics education, Educational institutions, United StatesQuantitative (QT)

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)

Brody, H., Croisant, S. A., Crowder, J. W., & Banda, J. P. (2015). Ethical issues in patient-centered outcomes research and comparative effectiveness research: a pilot study of community dialogue. Journal of Empirical Research on Human Research Ethics, 10 (1), 22-30.
Multicultural competenceAdults (other)Community organizationsUnited StatesQualitative (QL)

Calsyn, D. A., Burlew, A., Hatch-Maillette, M. A., Wilson, J., Beadnell, B., & Wright, L. (2012). Real men are safe-culturally adapted: Utilizing the Delphi process to revise Real Men Are Safe for an ethically diverse group of men in substance abuse treatment. AIDS Education And Prevention, 24(2), 117-131.
Multicultural competence, People at risk for HIV, People at risk for or with other STIs, Clinical Trials, United StatesQuantitative (QT)

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)

Coetzee, T., Hoffmann, W. A., & De Roubaix, M. (2015). An evaluation of research ethics in undergraduate health science research methodology programs at a South African university.  Journal of Empirical Research on Human Research Ethics, 10 (4), 389-394.
Research misconductCollege students and young adultsEthics educationEducational institutions, South Africa, Qualitative (QL)

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)

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)

De Bruyn, G., Skhosana, N., Robertson, G., McIntyre, J. A., & Gray, G. E. (2008). Knowledge and attitudes towards HIV vaccines among Soweto adolescents. BMC Research Notes, doi:10.1186/1756-0500-1-76
Assent and self-consent (children and adolescents), Stigma, Voluntariness and self-efficacy, Adolescents, People at risk for HIV, Clinical trials, South Africa, Quantitative (QT)

Deng, J., Qian, M., Gan, Y., Hu, S., Gao, J., Huang, Z., & Zhang, L. (2015). Emerging practices of counseling and psychotherapy in China: ethical dilemmas in dual relationships. Ethics and Behavior, 26 (1), 63-86.
Multicultural competenceResearch misconductTherapeutic misconceptionAdults (other)Survey researchHealth-care facilitiesChinaQualitative (QL)

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)

Eisingerich, A. B., et al. (2012). Attitudes and Acceptance of Oral and Parenteral HIV Preexposure Prophylaxis among Potential User Groups: A Multinational Study. PLoS ONE 7(1): e28238.
Research risks and benefits, Stigma, Adults (other), People at risk for HIV, People at risk for or with other STIs, People involved in sex work, People who inject drugs, Sexual and gender minorities, Community-engaged research, Community organizations, Health-care facilities, Botswana, India, Kenya, Peru, South Africa, Uganda, UkraineQuantitative (QT)

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 trials, Survey 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)

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. (2011). Addiction research ethics and the Belmont principles: Do drug users have a different moral voice? Substance Use and Misuse, 46 (6), 728-741.
Confidentiality and privacyResearch misconductPeople at risk for or with other substance abuse addictionsPeople who inject drugsSurvey researchCommunity organizations, United StatesMixed methods (MM)

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 research, Educational 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 trials, Neighborhoods, United StatesMixed methods (MM)

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)

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)

Fisher, C. B., Fried, A. L., & Feldman, L. G. (2009). Graduate socialization in the responsible conduct of research: A national survey on the research ethics training experiences of psychology doctoral students. Ethics & behavior, 19(6), 496-518.
Investigator practices and perspectives, Research misconduct, College students and young adults, Ethics education, Educational institutions, United StatesQuantitative (QT)

Fisher, C. B., Fried, A. L., Goodman, S. J., & Germano, K. K. (2009). Measures of mentoring, department climate, and graduate student preparedness in the responsible conduct of psychological research. Ethics & behavior, 19(3), 227-252.
Investigator practices and perspectives, Research misconduct, College students and young adults, Ethics education, Educational institutions, United StatesQuantitative (QT)

Fisher, C. B., et al. (2013). Moral Stress, Moral Practice and Ethical Climate in Community-Based Drug-Use Research: Views from the Front Line. American Journal of Bioethics Primary Research, 4(3), 27-38.
Investigator practices and perspectivesPeople at risk for or with substance use addictions, Research misconduct, Community-engaged research

Fischer, B. A., & George, P. (2010). The investigator and the IRB: A survey of depression and schizophrenia researchers. Schizophrenia research, 122(1-3), 206.
Investigator practices and perspectives, IRB practices and perspectives, Adults with mental health disorders, Adults with neurological disorders, Investigators, IRB members, Research staff, Clinical trials, Educational institutions, United StatesQuantitative (QT)

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)

Forester, M., Kahn, J. H., & Hesson-McInnis, M. S. (2004). Factor structures of three measures of research self-efficacy. Journal of Career Assessment,12(1), 3-16.
Investigator practices and perspectivesVoluntariness and self-efficacyCollege students and young adultsInvestigators, Research staff, Ethics education, Educational institutions, United StatesQuantitative (QT)

Forman, R. F., Bovasso, G., Clark, C., McNicholas, L., Royer-Malvestuto, C., Weinstein, S., & Woody, G. (2002). Staff beliefs about drug abuse clinical trials. Journal of Substance Abuse Treatment, 23 (1), 55-60.
Therapeutic misconceptionVoluntariness and self-efficacyAdults (other), Clinical trialsEthics educationHealth-care facilitiesUnited StatesQuantitative (QT)

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)

Garber, M., Hanusa, B. H., Switzer, G. E., Mellors, J., & Arnold, R. M. (2007). HIV-infected African Americans are willing to participate in HIV treatment trials. Journal of General Internal Medicine, 22(1), 17-42.
Multicultural competence, Voluntariness and self-efficacy, People living with HIV, Clinical trials, Health-care facilities, United States, Quantitative (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

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)

Haire, B. (2013). Ethics of Medical Care and Clinical Research: A Qualitative Study of Principal Investigators in Biomedical HIV Prevention Research. Journal Of Medical Ethics: The Journal Of The Institute Of Medical Ethics, 39(4), 231-235.
Investigator practices and perspectives, Investigators, Research staff, Clinical trials, Health-care facilities, AustraliaQualitative (QL)

Hall, M. A., Camacho, F., Lawlor, J. S., DePuy, V., Sugarman, J., & Weinfurt, K. (2006). Measuring trust in medical researchers. Medical care, 1048-1053.
Confidentiality and privacy, Research trust and mistrust, Voluntariness and self-efficacy, Adults (other), Survey research, Health-care facilities, United StatesQuantitative (QT)

Hamm, M., Scott, S., Klassen, T., Moher, D., & Hartling, L. (2012). Do health care institutions value research? A mixed methods study of barriers and facilitators to methodological rigor in pediatric randomized trials. BMC medical research methodology, 12(1), 158.
Assent and self-consent (children and adolescents), Investigator practices and perspectives, Investigators, Research staff, Clinical trials, Health-care facilities, CanadaMixed methods (MM)

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)

Hemminki, E., Virtanen, J. I., & Regushevskaya, E. (2015). Decisions by Finnish medical research ethics committees: a nationwide study of process and outcomes. Journal of Empirical Research on Human Research Ethics, 10 (4), 404-413.
IRB practices and perspectivesIRB membersClinical trialsFinlandQuantitative (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)

Keith-Spiegel, P. & Koocher, G. P. (2005). Institutional Review Board Researcher Assessment Tool (IRB-RAT).
Investigator practices and perspectives, IRB practices and perspectives, Investigators, IRB members, Research staff, 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 members, Children, Clinical trials, United States, Quantitative (QT)

Klitzman, R. (2008). Views of the process and content of ethical reviews of HIV vaccine trials among members of US institutional review boards and South African research ethics committees. Developing World Bioethics, 8(3), 207-218.
IRB practices and perspectives, Government officials and staff, IRB members, Clinical trials, Government agencies, South Africa, United StatesQuantitative (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 facilities, CanadaQuantitative (QT)

Kostick, K. M., Weeks, M., & Mosher, H. (2014). Participant and staff experiences in a peed-delivered HIV prevention with injection drug users. JERHRE, 9 (1), 6-18.
Clinical efficacyInvestigator practices and perspectives, Research misconductInvestigatorsPeople at risk for HIVPeople who inject drugsCommunity-engaged researchCommunity organizationsUnited StatesQualitative (QL)

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)

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)

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, SwedenQuantitative (QT) 

Meyers, K., Metzger, D. S., Navaline, H., Woody, G. E., & McLellan, A. T. (1994). HIV vaccine trials: Will intravenous drug users enroll? American Journal of Public Health, 84(5), 761-766.
Voluntariness and self-efficacyPeople at risk for HIV, People who inject drugs, Clinical trials, Health-care facilitiesUnited StatesQuantitative (QT)

Minniear, T. D., Gilmore, B., Arnold, S. R., Flynn, P. M., Knapp, K. M., & Gaur, A. H. (2009). Implementation of and barriers to routine HIV screening for adolescents. Pediatrics, 124, 1076-1083.
Assent and self-consent (children and adolescents), Adolescents, Health-care facilities, United States, Quantitative (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 benefits, Research trust and mistrust, Adults (other), Parents, Clinical trials, Health-care facilities, United StatesMixed methods (MM)

O’Lonergan, T. A., & Forster-Harwood, J. E. (2011). Novel approach to parental permission and child assent for research: Improving comprehension. Pediatrics, 127(5), 917-924.
Assent and self-consent (children and adolescents), Investigator practices and perspectives, Voluntariness and self-efficacy, Adolescents, Children, Ethics education, Multimedia, Survey research, Health-care facilities, United StatesQuantitative (QT)

Ott, M. A., Alexander, A. B., Lally, M., Steever, J. B., & Zimet, G. D. (2013). Preventive misconception and adolescents’ knowledge about HIV vaccine trials. Journal Of Medical Ethics: Journal Of The Institute Of Medical Ethics, 39(12), 765-771.
Assent and self-consent (children and adolescents), Therapeutic misconception, Adolescents, People at risk for HIV, People at risk for or with other STIs, Clinical trials, Health-care facilities, United 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)

Phillips, J. C., & Russell, R. K. (1994). Research self-efficacy, the research training environment, and research productivity among graduate students in counseling psychology. The Counseling Psychologist, 22, 628-641.
Investigator practices and perspectives, Voluntariness and self-efficacy, College students and young adults, Investigators, Ethics educationSurvey research, Educational institutions, United States, Quantitative (QT)

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)

Ripley, E., Macrina, F., Markowitz, M., & Gennings, C. (2010). Why do we pay? A national survey of investigators and IRB chairpersons. Journal of empirical research on human research ethics: JERHRE, 5(3), 43.
Investigator practices and perspectives, IRB practices and perspectives, Investigators, IRB members, Clinical trials, Educational institutions, United StatesQuantitative (QT)

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)

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)

Rubright, J. D., Cary, M. S., Karlawish, J. H., & Kim, S. Y. (2011). Measuring how people view biomedical research: Reliability and validity analysis of the Research Attitudes Questionnaire. Journal of Empirical Research on Human Research Ethics, 6(1), 63-68.
Confidentiality and privacy, Research trust and mistrust, Stigma, Adults (other), Online and social media research, Online web panel, United StatesQuantitative (QT)

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)

Silaigwana, B., & Wassenaar, D. (2015). Biomedical research ethics committees in Sub-Saharan Africa: a collective review of their structure, functioning, and outcomes. Journal of Empirical Research on Human Research Ethics, 10 (2), 169-184.
IRB practices and perspectivesAdults (other)IRB membersClinical trialsEducational institutionsHealth-care facilitiesSouth AfricaMixed 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 trials, Health-care facilities, AustraliaQuantitative (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)

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 trials, Health-care facilities, China, ThailandQuantitative (QT)

Sullivan, S., Aalborg, A., Basagoitia, A., Cortes, J., Lanza, O., & Schwind, J. S. (2015). Exploring perceptions and experiences of Bolivian health researchers with research ethics. Journal of Empirical Research on Human Research Ethics, 10 (2), 185-195.
Investigator practices and perspectives, InvestigatorsResearch staffEthics educationEducational institutionsBoliviaQuantitative (QT)

Tsang, T. S. M., Jones, M., & Meneilly, G. S. (2015). Analysis of research ethics board approval times in an academic department of medicine. Journal of Empirical Research on Human Research Ethics, 10 (2), 145-150.
IRB practices and perspectivesAdults (other)IRB membersClinical trialsEducational institutionsCanadaQuantitative (QT)

Uuskula, A., Johnston, L. G., Raag, M., Trummal, A., Talu, A., & Des Jarlais, D. C. (2010). Evaluating recruitment among female sex workers and injecting drug users at risk for HIV using respondent-driven sampling in Estonia. Journal of Urban Health: Bulletin of the New York Academy of Medicine, 87(2), 304-317.
Randomization, People at risk for HIV, People involved in sex work, People who inject drugs, Estonia, Mixed Methods (MM)

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)

Varas-Diaz, N., Negron, S. S., Neilands, T. B., Bou, F. C., & Rivera, S. M. (2010). Stigmatization of illicit drug use among Puerto Rican health professionals in training. Puerto Rico Health Sciences Journal, 29(2), 109-116.
Stigma, Adults (other), People at risk for or with substance use addictions, Health-care facilities, Puerto Rico, Mixed Methods (MM)

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)

Wolthers, O. D. (2006). A questionnaire on factors influencing children’s assent and dissent to non-therapeutic research. Journal of medical ethics, 32(5), 292-297.
Assent and self-consent (children and adolescents), Voluntariness and self-efficacy, Adolescents, Children, Clinical trials, Educational institutions, DenmarkMixed methods (MM)

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)

Yin, L., Zhang, Y., Qian, H., Rui, B., Zhang, L., Zhu, J., Shao, Y. (2008). Willingness of Chinese injection drug users to participate in HIV vaccine trials. Vaccine, 26, 762-768.
Voluntariness and self-efficacy, People at risk for HIV, People who inject drugs, Clinical trials, Neighborhoods, China, Quantitative (QT)

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