Participatory researchers rely on relationship-based ethical considerations to address ethical challenges, but little is known about how these considerations shape day-to-day decision-making. We presented vignettes describing ethical dilemmas to health researchers with varying degrees of experience in participatory research in an online modified-Delphi panel. Panelists rated potential solutions to dilemmas and provided rationales for choosing solutions in text boxes and discussion boards. Panelists agreed on a preferred solution for three of five vignettes. Panelists indicated that ethical research decision-making should be inclusive of diverse perspectives. Panelists prioritized scientific goals above participatory ones and viewed tenets of scientific validity as value-free. Panelists indicated that participatory research ethics would be difficult to codify, but that vignette-based learning could support didactic objectives.
AtzmüllerC.SteinerP. M. (2015). Experimental vignette studies in survey research. Methodology, 6, 128-138.
2.
BanksS.ArmstrongA.CarterK.GrahamH.HaywardP.HenryA.. . . McNultyA. (2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8, 263-277.
3.
BarterC.RenoldE. (1999). The use of vignettes in qualitative research. Social Research Update, 25(9), 1-6.
4.
BeatonA.HudsonM.MilneM.PortR. V.RussellK.SmithB.. . . BartholomewK. (2016). Engaging Maori in biobanking and genomic research: A model for biobanks to guide culturally informed governance, operational, and community engagement activities. Genetics in Medicine, 19, 345-351.
5.
BravemanP. (2006). Health disparities and health equity: Concepts and measurement. Annual Review of Public Health, 27, 167-194.
6.
BromleyE.MikesellL.JonesF.KhodyakovD. (2015). From subject to participant: Ethics and the evolving role of community in health research. American Journal of Public Health, 105, 900-908.
7.
BruggeD.ColeA. (2003). A case study of community-based participatory research ethics: The Health Public Housing Initiative. Science and Engineering Ethics, 9, 485-501.
8.
CallahanD.JenningsB. (2002). Ethics and public health: Forging a strong relationship. American Journal of Public Health, 92, 169-176.
9.
CargoM.MercerS. L. (2008). The value and challenges of participatory research: Strengthening its practice. Annual Review of Public Health, 29, 325-350.
10.
ChantlerT.OtewaF.OnyangoP.OkothB.OdhiamboF.ParkerM.. . . GeisslerP. W. (2013). Ethical challenges that arise at the community interface of health research: Village reporters’ experiences in Western Kenya. Developing World Bioethics, 13, 30-37. doi:10.1111/dewb.12023
11.
ClaassenC. A.PearsonJ. L.KhodyakovD.SatowP. M.GebbiaR.ReidenbergD. J.. . . InselT. R. (2014). Reducing the burden of suicide in the U.S.: The aspirational research goals of the national action alliance for suicide prevention research prioritization task force. American Journal of Preventive Medicine, 47, 309-314.
12.
CohnS. (2008). Making objective facts from intimate relations: The case of neuroscience and its entanglements with volunteers. History of the Human Sciences, 21(4), 86-103.
13.
CookB. R.KesbyM.FazeyI.SprayC. (2013). The persistence of “normal” catchment management despite the participatory turn: Exploring the power effects of competing frames of reference. Social Studies of Science, 43, 754-779.
14.
CordnerA.CipletD.BrownP.Morell-FroschR. (2012). Reflexive research ethics for environmental health and justice: Academics and movement-building. Social Movement Studies, 11, 161-176.
15.
CornwallA.JewkesR. (1995). What is participatory research?Social Science & Medicine, 41, 1667-1676.
16.
DalalS. R.KhodyakovD.SrinivasanR.StrausS. G.AdamsJ. (2011). Expertlens: A system for eliciting opinions from a large pool of non-collocated experts with diverse knowledge. Technological Forecasting & Social Change, 78, 1426-1444.
17.
DomecqJ. P.PrutskyG.ElraiyahT.WangZ.NabhanM.ShippeeN.. . . MuradM. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14, 89.
18.
FitchK.BernsteinS. J.AguilarM. D.BurnandB.LacalleJ. R.LazaroO.. . . KahanJ. P. (2001). The RAND/UCLA appropriateness method user’s manual. Santa Monica, CA: RAND
19.
GoeringS.HollandS.Fryer-EdwardsK. (2008). Genetic research practices with marginalized communities. Hastings Center Report, 38(2), 43-53.
20.
HassonF.KeeneyS.McKennaH. (2000). Research guidelines for the Delphi survey technique. Journal of Advanced Nursing, 32, 1008-1015. doi:10.1046/j.1365-2648.2000.t01-1-01567.x
21.
HebertJ. R.BrandtH. M.ArmsteadC. A.AdamsS. A.SteckS. E. (2009). Interdisciplinary, translational, and community-based participatory research: Finding a common language to improve cancer research. Cancer Epidemiology and Prevention Biomarkers, 18, 1213-1217.
22.
HughesR.HubyM. (2002). The application of vignettes in social and nursing research. Journal of Advanced Nursing, 37, 382-386.
23.
JagoshJ.BushP. L.SalsbergJ.MacaulayA. C.GreenhalghT.WongG.. . . PluyeP. (2015). A realist evaluation of community-based participatory research: Partnership synergy, trust building and related ripple effects. BMC Public Health, 15(1), Article 725.
24.
KhanlouN.PeterE. (2005). Participatory action research: Considerations for ethical review. Social Science & Medicine, 60, 2333-2340.
25.
KhodyakovD.HempelS.RubensteinL.ShekelleP.FoyR.Salem-SchatzS.. . . DalalS. (2011). Conducting online expert panels: A feasibility and experimental replicability study. BMC Medical Research Methodology, 11(1), Article 174.
26.
KhodyakovD.MikesellL.BoothM.SchraiberR.BromleyE. (2016). On using ethical principles of community-engaged research in translational science. Translational Research, 171, 52-62.
27.
KhodyakovD.StockdaleS.JonesA.MangoJ.JonesF.LizaolaE. (2012). On measuring community participation in research. Health Education & Behavior, 40, 346-354.
28.
Kraemer-DiazA. E.Spears JohnsonC. R.ArcuryT. A. (2013). Variation in the interpretation of scientific integrity in community-based participatory health research. Social Science & Medicine, 97, 134-142.
29.
LauC. L. L. (2010). A step forward: Ethics education matters!Journal of Business Ethics, 92, 565-584. doi:10.1007/s10551-009-0173-2
30.
MahC. L.TaylorE.HoangS.CookB. (2014). Using vignettes to tap into moral reasoning in public health policy: Practical advice and design principles from a study on food advertising to children. American Journal of Public Health, 104, 1826-1832.
31.
MalleryC.GanachariD.FernandezJ.SmeedingL.RobinsonS.MoonM.. . . SiegelJ. (2012). Innovative methods in stakeholder engagement: An environmental scan. Rockville, MD: American Institutes for Research, Agency for Healthcare Research and Quality.
32.
MaloneR. E.YergerV. B.McGruderC.FroelicherE. (2006). It’s like Tuskegee in reverse: A case study of ethical tensions in Institutional Review Board review of community-based participatory research. American Journal of Public Health, 96, 1914-1919.
33.
McCarronM. C. E.StewartD. W. (2011). A Canadian perspective on using vignettes to teach ethics in psychology. Canadian Psychology/psychologie Canadienne, 52, 185-191. doi:10.1037/a0024504
34.
MikesellL.BromleyE.KhodyakovD. (2013). Ethical community-engaged research: A literature review. American Journal of Public Health, 103(12), e7-e14.
35.
MinklerM. (2010). Linking science and policy through community-based participatory research to study and address health disparities. American Journal of Public Health, 100(Suppl. 1), S81-S87.
36.
MinklerM.WallersteinN. (Eds.). (2008). Community-based participatory research for health: From process to outcomes (2nd ed.). San Francisco, CA: Jossey-Bass.
37.
MonahanA.StewartD. E.OliverS.Clarke-JonesL.ReesR.MilneR.. . . SteinK. (2003). The role of lay panelists on grant review panels: Involving consumers in research and development agenda setting for the NHS: Developing an evidence-based approach. Chronic Diseases in Canada, 24(2-3), 70-74.
38.
MooneyG. H. (1983). Equity in health care: Confronting the confusion. Effective Health Care, 1(4), 179-185.
Principles of Community Engagement. (2011, June). Clinical and translational science awards consortium (Publication No 11-7782, 2nd ed.). Community Engagement Key Function Committee Task Force on the Principles of Community Engagement, National Institute of Health, NIH.
46.
RobertsL. W.WarnerT. D.HammondK. A. G.BrodyJ. L.KaminskyA.RobertsB. B. (2005). Teaching medical students to discern ethical problems in human clinical research studies. Academic Medicine, 80, 925-930.
47.
RubensteinL.KhodyakovD.HempelS.DanzM.Salem-SchatzS.FoyR.. . . ShekelleP. (2014). How can we recognize continuous quality improvement?International Journal for Quality in Health Care, 26, 6-15.
48.
RyanG. W.BernardH. R. (2003). Techniques to identify themes. Field Methods, 15, 85-109.
49.
SchmittdielJ. A.GrumbachK.SelbyJ. V. (2010). System-based participatory research in health care: An approach for sustainable translational research and quality improvement. The Annals of Family Medicine, 8, 256-259.
50.
SchoenbergN. E.RavdalH. (2000). Using vignettes in awareness and attitudinal research. International Journal of Social Research Methodology, 3, 63-74.
51.
ShoreN. (2007). Re-conceptualizing the Belmont report. Journal of Community Practice, 14(4), 5-26.
52.
ShoreN.WongK. A.SeiferS. D.GrignonJ.Northington GambleV. (2008). Introduction to special issue: Advancing the ethics of community-based participatory research. Journal of Empirical Research on Human Research Ethics, 3(2), 1-4.
53.
SkinnerH. G.CalancieL.VuM. B.GarciaB.DeMarcoM.PattersonC.. . . SchislerJ. C. (2015). Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research. PLoS ONE, 10(5), e0125466.
54.
SmithS. A.BlumenthalD. S. (2013). Translating research to practice. In BlumenthalD. S.DiClementeR. L.BraithwaiteS. A.SmithS. A. (Eds.), Community-based participatory health research: Issues, methods, and translation to practice (pp. 181-94). New York, NY: Springer.
55.
SofaerN.EyalN. (2010). The diverse ethics of translational research. The American Journal of Bioethics, 10(8), 19-30.
56.
StellefsonM.PaigeS. R.AlberJ. M.BarryA. E.JamesD. (2015). Proposing ethical practice standards for community-engaged research in health education. American Journal of Health Education, 46(2), 61-66.
57.
SugarmanJ. (2016). Ethics and regulatory challenges and opportunities in patient-centered comparative effectiveness research. Academic Medicine, 91, 455-457.
58.
SvendsenM. N.KochL. (2008). Between neutrality and engagement: A case study of recruitment to pharmacogenomic research in Denmark. Biosocieties, 3, 399-418.
59.
TallonD.ChardJ.DieppeP. (2000). Relation between agendas of the research community and the research consumer. The Lancet, 355, 2037-2040.
60.
WainwrightS. P.WilliamsC.MichaelM.FarsidesB.CribbA. (2006). Ethical boundary-work in the embryonic stem cell laboratory. Sociology of Health & Illness, 28, 732-748.
61.
WestfallJ. M.MoldJ.FagnanL. (2007). Practice-based research—“Blue highways” on the NIH roadmap. Journal of the American Medical Association, 297, 403-406.
62.
WilsonE.KennyA.Dickson-SwiftV. (2017). Ethical challenges of community based participatory research: Exploring researchers’ experience. International Journal of Social Research Methodology. Advance online publication. doi:10.1080/13645579.2017.1296714
63.
WynneB. (2006). Public engagement as a means of restoring public trust in science—Hitting the notes, but missing the music?Community Genetics, 9, 211-220.
64.
YonasM. A.JaimeM. C.BaroneJ.ValentiS.DocumétP.RyanC. M.. . . MillerE. (2016). Community partnered research ethics training in practice: A collaborative approach to certification. Journal of Empirical Research on Human Research Ethics, 11, 97-105.
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