Research Ethics Scales and Measures

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. The type of instrument used in the article is indicated in parentheses following the reference.

We welcome submissions of scales and measures on research on research ethics. Please contact Elizabeth Yuko (eyuko@fordham.edu) with submissions.

Consent Assessment and Enhancement
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.
(questionnaire)

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. Doi: 10.1371/journal/pone/0053993.
(multinomial logistic regression assessed the association between the levels of ART knowledge and HIV- and ART-related stigma)

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.
(questionnaire; patients perceptions of written consent)

Applebaum, 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.
(questionnaire; voluntariness)

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.
(questionnaire; ability to consent to research by people with an intellectual disability)

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 quiz)

Cohn, J. M., Ginsburg, K. R., Kassam-Adams, N., & Fein, J. A. (2005). Adolescent decisional autonomy regarding participation in an emergency department youth violence interview. The American Journal of Bioethics, 5(5), 70-74.
(violence assessment survey, structured interview)

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.
(questionnaire; risk)

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.
(questionnaire)

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.
(questionnaire)

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.
(150 adults responded to a set of consent questions for a hypothetical randomized clinical trial testing a medication for aggressive disorders)

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.
(An empirical examination of 322 7th–12th graders’ and 160 parents’ opinions on questions related to 4 ethical dimensions of survey research practice)

Fisher, C. B. (2010). Enhancing HIV Vaccine Trial Consent Preparedness Among Street Drug Users.  Journal of Empirical Research on Human Research Ethics, 65-80.
(open-ended and true-false questions to assess the preparedness of 96 ethnically diverse, economically and socially marginalized adult street drug users to consent to participate in HIV vaccine trials)

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.
(O’Connor’s 16-item Decisional Conflict Scale (DCS; version A))

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

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.
(survey)

Jeste, D.V. et al (2007). A New Brief Instrument for Assessing Decisional Capacity for Clinical Research. Arch Gen Psychiatry, 64(8), 966-974.
(10-item scale that included questions focusing on understanding and appreciation of the information concerning a research protocol)

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.
(questionnaire; quality of informed consent)

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.
(questionnaire; quality of informed consent)

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 quiz)

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.
(retrospective quasiexperimental study)

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.
(questionnaire)

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.
(questionnaire)

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.
(questionnaire; quality of informed consent)

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.
(Deaconess Informed Consent Comprehension Test)

Miller, V. A., Reynolds, W. W., Ittenbach, R. F., Luce, M. F., Beauchamp, T. L., & Nelson, R. M. (2009). Challenges in measuring a new construct: Perception of voluntariness for research and treatment decision making. Journal of empirical research on human research ethics: JERHRE, 4(3), 21-31.
(many measures from others listed)

Miller, V. A., Reynolds, W. W., & Nelson, R. M. (2008). Parent–Child Roles in Decision Making About Medical Research. Ethics & Behavior, 18(2-3), 161-181.
(semi-structured interview)

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.
(questionnaire)

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.
(survey)

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.
(questionnaire and semi-structured interview)

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.
(Structured interviews and parallel surveys)

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.
(survey)

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.
(questionnaire; procedures for obtaining informed consent in a clinical trial)

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.
(questionnaire; incentives)

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.
(semi-structured interviews AND structured set-response survey)

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.
(questionnaire; assessment of comprehension)

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.
(questionnaire)

Institutional Review Boards
Applebaum, 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.
(questionnaire; voluntariness)

Ashcraft, M. H., & Krause, J. A. (2007). Social and behavioral researchers’ experiences with their IRBs. Ethics & Behavior, 17(1), 1-17.
(survey of researchers’ experiences with IRBs)
Fischer, B. A., & George, P. (2010). The investigator and the IRB: A survey of depression and schizophrenia researchers. Schizophrenia research, 122(1-3), 206.
(survey)

Keith-Spiegel, P. & Koocher, G. P. (2005). Institutional Review Board Researcher Assessment Tool (IRB-RAT).

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.
(retrospective quasiexperimental study)

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.
(questionnaire)

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.
(web-based survey)

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.
(21-question telephone survey of 188 randomly selected chairpersons of IRBs in the Unites States)

Investigator and Institutional Perspectives
Ashcraft, M. H., & Krause, J. A. (2007). Social and behavioral researchers’ experiences with their IRBs. Ethics & Behavior, 17(1), 1-17.
(survey of researchers’ experiences with IRBs)

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.
(Respondents rate their confidence in their ability to perform 51 research tasks on a 100-point scale from 0 (no confidence) to 100 (complete confidence))

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.
(questionnaire)

Fischer, B. A., & George, P. (2010). The investigator and the IRB: A survey of depression and schizophrenia researchers. Schizophrenia research, 122(1-3), 206.
(survey)

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.
(web-based survey on research ethics)

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.
(4 web-based student self-report scales tapping student socialization in the responsible conduct of research (RCR) with human participants)

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.
(anonymous web-based survey)

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.
(an Internet survey comprising the three research self-efficacy instruments: RSES, SERM and RAM)

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.
(quantitative survey AND semi-structured interviews)

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.
(a 33-item instrument with four subscales: research design skills, practical research skills, quantitative and computer skills, and writing skills)

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.
(web-based survey)

Participant Perspectives 
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.
(questionnaire; patients perceptions of written consent)

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.
(yes/no survey questions)

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.
(surveys of willingness to use PrEP products)

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.
(questionnaire)

Fisher, C. B., & Fyrberg, D. (1994). Participant partners: College students weigh the costs and benefits of deceptive research. American Psychologist,49(5), 417.
(questionnaire, 4-point Likert scale to survey students’ opinions on deception)

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.
(An empirical examination of 322 7th–12th graders’ and 160 parents’ opinions on questions related to 4 ethical dimensions of survey research practice)

Fisher, C. B. (2010). Enhancing HIV Vaccine Trial Consent Preparedness Among Street Drug Users.  Journal of Empirical Research on Human Research Ethics, 65-80.
(open-ended and true-false questions to assess the preparedness of 96 ethnically diverse, economically and socially marginalized adult street drug users to consent to participate in HIV vaccine trials)

Hall, M. A., Camacho, F., Lawlor, J. S., DePuy, V., Sugarman, J., & Weinfurt, K. (2006).Measuring trust in medical researchers. Medical care, 1048-1053.
(survey; trust in medical research)

Kassam-Adams, N., & Newman, E. (2002). The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P). General Hospital Psychiatry, 24(5), 336-342.
(Reactions to Research Participation Questionnaire for Children, and the Reactions to Research Participation Questionnaire for Parents; child/parent perceptions of research)

Kassam-Adams, N. Newman, E. (2005). Child and parent reactions to participation in clinical research. General Hospital Psychiatry, 27(1),  29-35.
(questionnaire)

Miller, V. A., Reynolds, W. W., & Nelson, R. M. (2008). Parent–Child Roles in Decision Making About Medical Research. Ethics & Behavior, 18(2-3), 161-181.
(semi-structured interview)

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.
(Reactions to Research Participation Questionnaire)

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.
(questionnaire)

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.
(Structured interviews and parallel surveys)

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.
(questionnaire)

Singer, E., & Couper, M. P. (2008). Do incentives exert undue influence on survey participation? Experimental evidence. Journal of empiricalresearch on human research ethics: JERHRE, 3(3), 49-56.
(questionnaire; incentives)

Yessis, J. L., et al (2012). Development of a Research Participants’ Perception Survey to Improve Clinical Research. CTS Journal, 5(6): 452-460.
(Research Participants’ Perception Survey to Improve Clinical Research)

Additional Measures 
Kokolo, M. B., et al. (2011). HIV Pre-Exposure Prophylaxis (PrEP) – A Quantitative Ethics Appraisal.PLoS ONE 6(8): e22497.
(systematic quantitative ethics appraisal, a priori checklist of 101 evidence-based ethics items)

Koocher, G. P. (2002). Using the CABLES model to assess and minimize risk in research: control group hazards. Ethics & behavior, 12(1), 75-86.
(set of questions)

Quirk, M. E., Godkin, M. A., & Schwenzfeier, E. (1993). Evaluation of two AIDS prevention interventions for inner-city adolescent and young adult women. American journal of preventive medicine.
(questionnaire)

Siyam’Kela. From Indicators to Action: Monitoring and Evaluation Tools. Center for the Study of AIDS, University of Pretoria.
(stigma indicator tools and questionnaire)

Stevenson, H.C. & White, J. J. (1994). AIDS prevention struggles in ethnocultural neighborhoods: why research partnerships with community based organizations can’t wait. AIDS Education Prevention, April 6(2), 126-139.
(Research Information Questionnaire)

Traube, D. E., et al. (2013). African American Children’s Perceptions of HIV-Focused Community-Based Participatory Research. Journal of Empirical Research on Human Research Ethics, 8(1), 79-90.
(Interviewers followed an interview format guided by the Research Information Questionnaire (Stevenson & White, 1994), consisting of 68 closed-ended questions. 12 of the 68 questions had open-ended responses. Quantitative and qualitative analysis of data.)

One response to “Research Ethics Scales and Measures

  1. Pingback: Introducing the Research Ethics Scales and Measures Website | Ethics and Society

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