In recent years, scholars have been critical of what they consider unethical conduct by researchers whose studies focus on members of the Deaf or signing communities. This is the first empirical study that investigates ethical concerns and recommendations from the perspective of three stakeholder groups (Deaf research participants, researchers, and Deaf studies experts). We analyzed focus group discussions using strategies from grounded theory and community-based participatory research. The themes we identified highlight the need for the broader scientific research community to include linguistically and culturally sensitive research procedures that more adequately protect the rights of Deaf research participants, as well as other marginalized groups. We address the need to increase the number of Deaf scientists and reconsider collaboration practices between Deaf and hearing researchers.
BahanB. (2008). Upon the formation of a visual variety of the human race. In BaumanH. L. (Ed.), Open your eyes: Deaf studies talking (pp. 83-99). Minneapolis: University of Minnesota Press.
2.
Baker-ShenkC.KyleJ. (1990). Research with Deaf people: Issues and conflicts. Disability, Handicap & Society, 5, 65-75.
3.
BalchG.MertensD. (1999). Focus group design and group dynamics: Lessons from Deaf and hard of hearing participants. American Journal of Evaluation, 20, 265-278.
4.
BaumanH. D.MurrayJ. J. (2009). Reframing: From hearing loss to Deaf-Gain. Deaf Studies Digital Journal, 1(1). Available from http://dsdj.gallaudet.edu/
5.
BoudreaultP.BaldwinE. E.FoxM.DuttonL.TullisL.LindenJ.. . . PalmerC. (2010). Deaf adults’ reasons for genetic testing depend on cultural affiliation: Results from a prospective, longitudinal, genetic counseling, and testing study. Journal of Deaf Education and Deaf Studies, 15, 209-227.
6.
BransonJ.MillerD. (2002). Damned for their difference: The cultural construction of Deaf people as disabled. Washington, DC: Gallaudet University Press.
7.
BryantA.CharmazK. (2007). Grounded theory research: Methods and practices. In BryantA.CharmazK. (Eds.), The SAGE handbook of grounded theory (pp. 1-28). Thousand Oaks, CA: SAGE.
8.
CharmazK. (2001). Qualitative interviewing and grounded theory analysis. In GubriumJ. F.HolsteinJ. A. (Eds.), Handbook of interview research: Context & method (pp. 675-694). Thousand Oaks, CA: SAGE.
9.
GraybillP.AggasJ.DeanR. K.DemersS.FiniganE.PollardR. Q. (2010). A community-participatory approach to adapting survey items for deaf individuals and American Sign Language. Field Methods, 22, 429-448.
10.
HanumanthaS. (2009). Performance comparisons of Deaf and hearing adults on the Wechsler Memory Scale–Third edition subtests: Faces I, II (Unpublished dissertation). Gallaudet University, Washington, DC.
11.
HarrisR.HolmesH.MertensD. (2009). Research ethics in sign language Communities. Sign Language Studies, 9, 104-131.
12.
HaugT.MannW. (2008). Adapting tests of sign language assessment for other sign languages: A review of linguistic, cultural, and psychometric problems. Journal of Deaf Studies and Deaf Education, 13, 138-147.
13.
HauserP. C.O’HearnA.McKeeM.SteiderA.ThewD. (2010). Deaf epistemology: Deafhood and deafness. American Annals of the Deaf, 154, 486-492.
14.
HerzigM.KrumdickK. (2011). Ethical assessment approaches: A view of what we have and what we need. In ChristensenK. M. (Ed.), Ethical considerations in educating children who are Deaf or hard of hearing (pp. 101-114). Washington, DC: Gallaudet University Press.
15.
HoltonJ. (2007). The coding process and its challenges. In BryantA.CharmazK. (Eds.), The SAGE handbook of grounded theory (pp. 265-289). Thousand Oaks, CA: SAGE.
16.
IsraelB. A.SchulzA. J.ParkerE. A.BeckerA. B.AllenA. J.GuzmanJ. R. (2008). Critical issues in developing and following community based participatory research principles. In MinklerM.WallersteinN. (Eds.), Community-based participatory research for health: From process to outcomes (pp. 53-76). San Francisco, CA: Jossey-Bass.
17.
JonesS. (2004). Problematizing the familiar: Deaf students as researchers of Deaf people. Qualitative Social Work, 3, 27-38.
18.
LaddP. (2003). Understanding Deaf culture: In search of Deafhood. Tonawanda, NY: Multilingual Matters.
19.
LaddP. (2008). Colonialism and resistance: A brief history of Deafhood. In BaumanH. L. (Ed.), Open your eyes: Deaf studies talking (pp. 42-59). Minneapolis, MN: University of Minnesota Press.
20.
LaneH. (2005). Ethnicity, ethics, and the Deaf-world. Journal of Deaf Studies and Deaf Education, 10, 291-310.
21.
LaneH.HoffmeisterR.BahanB. (1996). A journey into the Deaf world. San Diego, CA: Dawn Sign Press.
PaddenC.HumphriesT. (1988). Deaf in America: Voices from a culture. Cambridge, MA: Harvard University Press.
24.
PaulP. V.MooresD. F. (2010). Introduction: Toward an understanding of epistemology and deafness. American Annals of the Deaf, 154, 421-427.
25.
PollardR. Q. (1992). Cross-cultural ethics in the conduct of deafness research. Rehabilitation Psychology, 37, 87-101.
26.
PollardR. Q. (2002). Ethical conduct in research involving Deaf people. In GutmanV. (Ed.), Ethics in mental health and deafness (pp. 162-178). Washington, DC: Gallaudet University Press.
27.
PollardR. Q.DeMatteoA.LentzE.RediessS. (2007). A prose recall test using stories in American Sign Language. Rehabilitation Psychology, 52, 11-24.
28.
PollardR. Q.RediessS.DeMatteoA. (2005). Development and validation of the Signed Paired Associates Test. Rehabilitation Psychology, 50, 258-265.
29.
SingletonJ. L.SupallaS. (2011). Assessing children’s proficiency of natural signed languages. In MarscharkM.SpencerP. (Eds.), Oxford handbook of Deaf studies, language, and education (2nd ed., pp. 306-321). New York, NY: Oxford University Press.
30.
StraussA.CorbinJ. (1998). Basics of qualitative research (2nd ed.). Thousand Oaks, CA: SAGE.
31.
TrimbleJ. E. (1988). Putting the ethic to work: Applying social psychological principles in cross-cultural settings. In BondM. H. (Ed.), The cross-cultural challenge to social psychology (pp. 109-212). Newbury Park, CA: SAGE.
32.
WallersteinN.DuranB. (2008). The conceptual, historical and practical roots of community based participatory research and related participatory traditions. In MinklerM.WallersteinN. (Eds.), Community based participatory research for health: From process to outcomes (pp. 27-52). San Francisco, CA: Jossey Bass.
33.
WithrowK. A.BurtonS.ArnosK. S.KalfoglouA.PandyaA. (2008). Consumer motivations for pursuing genetic testing and their preferences for the provision of genetic services for hearing loss. Journal of Genetic Counseling, 17, 252-260.
34.
WoodcockK.RohanM. J.CampbellL. (2007). Equitable representation of deaf people in mainstream academia: Why not?Higher Education, 53, 359-379.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
