Bibliography of select papers on &lsquo;ethics&rsquo; and &lsquo;informed consent&rsquo; in Linguistic research

Bibliography of select papers on 'ethics' and 'informed consent' in Linguistic research

8 Feb, 2020 7 min read Bibliography

Project

This is a short non-exhaustive bibliography of papers which discuss Informed consent in the context of one or more of the following:

minority language communities,
low literacy levels,
language research,
the legal aspect of the US IRB, and
‘how informed is informed consent’ .

I have several nagging questions, which I wonder how discussed they are including: “Is Intellectual property rights of minority language people covered in the typical informed consent protocols of language researchers?” and “How ethical is it to create voice-to-speech tools for a small language community when only one or two people provide voice samples?” When working independently, outside the confines of an organization these factors are not mitigated by institutional barriers to creativity or participant considerations.

References

Alexa-Stratulat, Neagu, Neagu, Alexa & Ioan (2018): Alexa-Stratulat, T., Neagu, M., Neagu, A., Alexa, I. & Ioan, B. (2018). Consent for participating in clinical trials - Is it really informed?. Developing World Bioethics, 18(3). 299–306. https://doi.org/10.1111/dewb.12199
Araali (2011): Araali, B. (2011). Perceptions of Research Assistants on How Their Research Participants View Informed Consent and Its Documentation in Africa. Research Ethics, 7(2). 39–50. https://doi.org/10.1177/174701611100700203
Bledsoe, Sherin, Galinsky, Headley, Heimer, Kjeldgaard, Lindgren, Miller, Roloff & Uttal (2007): Bledsoe, C., Sherin, B., Galinsky, A., Headley, N., Heimer, C., Kjeldgaard, E., Lindgren, J., Miller, J., Roloff, M. & Uttal, D. (2007). Regulating Creativity: Research and Survival in the IRB Iron Cage. Northwestern University Law Review, 101(2). 593–642.
Bowern (2010): Bowern, C. (2010). Fieldwork and the IRB: A snapshot. Language, 86(4). 897–905. https://doi.org/10.1353/lan.2010.0048
Brunon-Ernst (2015): Brunon-Ernst, A. (2015). The Fallacy of Informed Consent: Linguistic Markers of Assent and Contractual Design in Some E-User Agreements. Revista Alicantina de Estudios Ingleses // Alicante Journal of English Studies, 28. 37–58. https://doi.org/10.14198/raei.2015.28.03
Brunon-Ernst (2015): Brunon-Ernst, A. (2015). The Fallacy of Informed Consent: Linguistic Markers of Assent and Contractual Design in Some E-User Agreements. Revista Alicantina de Estudios Ingleses(28). 37. https://doi.org/10.14198/raei.2015.28.03
Cortés, Drainoni, Henault & Paasche-Orlow (2010): Cortés, D., Drainoni, M., Henault, L. & Paasche-Orlow, M. (2010). How to Achieve Informed Consent for Research from Spanish-Speaking Individuals with Low Literacy: A Qualitative Report. Journal of Health Communication, 15(sup2). 172–182. https://doi.org/10.1080/10810730.2010.499990
Corti, Day & Backhouse (2000): Corti, L., Day, A. & Backhouse, G. (2000). Confidentiality and Informed Consent: Issues for Consideration in the Preservation of and Provision of Access to Qualitative Data Archives. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, Vol 1. No 3 (2000): Text . Archive . ReAnalysis. https://doi.org/10.17169/FQS-1.3.1024
Debenport (2010): Debenport, E. (2010). The potential complexity of “universal ownership”: Cultural property, textual circulation, and linguistic fieldwork. Language & Communication, 30(3). 204–210. https://doi.org/10.1016/j.langcom.2009.11.001
DeCosta (2016): DeCosta, P. (2016). Ethics in applied linguistics research: language researcher narratives. Routledge.
DiPersio (2014): DiPersio, D. (2014). Linguistic Fieldwork and IRB Human Subjects Protocols: Linguistic Fieldwork and IRB Human Subjects Protocols. Language and Linguistics Compass, 8(11). 505–511. https://doi.org/10.1111/lnc3.12106
Dorian (2010): Dorian, N. (2010). Documentation and responsibility. Language & Communication, 30(3). 179–185. https://doi.org/10.1016/j.langcom.2009.11.003
Epstein (2005): Epstein, M. (2005). Ultrasound and the IRB. Clinical Linguistics & Phonetics, 19(6-7). 567–572. https://doi.org/10.1080/02699200500113889
Gong, Zhou, Cheng, Chen, Li, Wang, Chen, Chen, Meng & Zhang (2018): Gong, N., Zhou, Y., Cheng, Y., Chen, X., Li, X., Wang, X., Chen, G., Chen, J., Meng, H. & Zhang, M. (2018). Practice of informed consent in Guangdong, China: a qualitative study from the perspective of in-hospital patients. BMJ Open, 8(10). e020658. https://doi.org/10.1136/bmjopen-2017-020658
Govender, Villafranca, Hamlin, Hiebert, Parveen & Jacobsohn (2016): Govender, D., Villafranca, A., Hamlin, C., Hiebert, B., Parveen, D. & Jacobsohn, E. (2016). Appropriateness of Language Used in Patient Educational Materials from 24 National Anesthesiology Associations:. Anesthesiology, 125(6). 1221–1228. https://doi.org/10.1097/ALN.0000000000001361
Greely (2001): Greely, H. (2001). Informed Consent and Other Ethical Issues in Human Population Genetics. Annual Review of Genetics, 35(1). 785–800. https://doi.org/10.1146/annurev.genet.35.102401.091453
Hoeyer & Hogle (2014): Hoeyer, K. & Hogle, L. (2014). Informed Consent: The Politics of Intent and Practice in Medical Research Ethics. Annual Review of Anthropology, 43(1). 347–362. https://doi.org/10.1146/annurev-anthro-102313-030413
Howard & DeMets (1981): Howard, J. & DeMets, D. (1981). How informed is informed consent?. Controlled Clinical Trials, 2(4). 287–303. https://doi.org/10.1016/0197-2456(81)90019-2
Innes (2010): Innes, P. (2010). Ethical problems in archival research: Beyond accessibility. Language & Communication, 30(3). 198–203. https://doi.org/10.1016/j.langcom.2009.11.006
Jefford & Moore (2008): Jefford, M. & Moore, R. (2008). Improvement of informed consent and the quality of consent documents. The Lancet Oncology, 9(5). 485–493. https://doi.org/10.1016/S1470-2045(08)70128-1
Jol & Stommel (2016): Jol, G. & Stommel, W. (2016). Ethical considerations of secondary data use: What about informed consent?. Dutch Journal of Applied Linguistics, 5(2). 180–195. https://doi.org/10.1075/dujal.5.2.06jol
Kerr (2006): Kerr, R. (2006). Unconstitutional Review Board? Considering a First Amendment Challenge to IRB Regulation of Journalistic Research Methods. Communication Law and Policy, 11(3). 393–447. https://doi.org/10.1207/s15326926clp1103_4
Krieger, Neil, Strekalova & Sarge (2017): Krieger, J., Neil, J., Strekalova, Y. & Sarge, M. (2017). Linguistic Strategies for Improving Informed Consent in Clinical Trials Among Low Health Literacy Patients. Journal of the National Cancer Institute, 109(3). djw233. https://doi.org/10.1093/jnci/djw233
Kubanyiova (2008): Kubanyiova, M. (2008). Rethinking Research Ethics in Contemporary Applied Linguistics: The Tension Between Macroethical and Microethical Perspectives in Situated Research. The Modern Language Journal, 92(4). 503–518. https://doi.org/10.1111/j.1540-4781.2008.00784.x
Kumar, Mohanraj, Rose, Paul & Thomas (2012): Kumar, S., Mohanraj, R., Rose, A., Paul, M. & Thomas, G. (2012). How ‘informed’ is informed consent? Findings from a study in South India. Indian Journal of Medical Ethics(3). https://doi.org/10.20529/IJME.2012.061
Loh, Butow, Brown & Boyle (2002): Loh, W., Butow, P., Brown, R. & Boyle, F. (2002). Ethical communication in clinical trials: Issues faced by data managers in obtaining informed consent. Cancer, 95(11). 2414–2421. https://doi.org/10.1002/cncr.10994
Marshall (2007): Marshall, P. (2007). Ethical challenges in study design and informed consent for health research in resource-poor settings. World Health Organization.
Marta (1996): Marta, J. (1996). A Linguistic Model of Informed Consent. Journal of Medicine and Philosophy, 21(1). 41–60. https://doi.org/10.1093/jmp/21.1.41
McGuire & Beskow (2010): McGuire, A. & Beskow, L. (2010). Informed Consent in Genomics and Genetic Research. Annual Review of Genomics and Human Genetics, 11(1). 361–381. https://doi.org/10.1146/annurev-genom-082509-141711
Minter, Brabander, Ploeg, Persoon & Sunderland (2012): Minter, T., Brabander, V., Ploeg, J., Persoon, G. & Sunderland, T. (2012). Whose Consent? Hunter-Gatherers and Extractive Industries in the Northeastern Philippines. Society & Natural Resources, 25(12). 1241–1257. https://doi.org/10.1080/08941920.2012.676160
Ness, Kiesling & Lidz (2009): Ness, D., Kiesling, S. & Lidz, C. (2009). Why Does Informed Consent Fail? A Discourse Analytic Approach. The Journal of the American Academy of Psychiatry and the Law, 37(3). 349–362.
O’Meara & Good (2010): O’Meara, C. & Good, J. (2010). Ethical issues in legacy language resources. Language & Communication, 30(3). 162–170. https://doi.org/10.1016/j.langcom.2009.11.008
Pilegaard (2016): Pilegaard, M. (2016). The Ethics of Informed Consent. An Applied Linguistics Perspective. In Ordóñez-López, P. & Edo-Marzá, N. (Eds.), Medical Discourse in Professional, Academic and Popular Settings. (pp. 79–102). Multilingual Matters. https://doi.org/10.21832/9781783096268-006
Paasche-Orlow, Taylor & Brancati (2003): Paasche-Orlow, M., Taylor, H. & Brancati, F. (2003). Readability Standards for Informed-Consent Forms as Compared with Actual Readability. New England Journal of Medicine, 348(8). 721–726. https://doi.org/10.1056/NEJMsa021212
Perrenoud, Velonaki, Bodenmann & Ramelet (2015): Perrenoud, B., Velonaki, V., Bodenmann, P. & Ramelet, A. (2015). The effectiveness of health literacy interventions on the informed consent process of health care users: a systematic review protocol:. JBI Database of Systematic Reviews and Implementation Reports, 13(10). 82–94. https://doi.org/10.11124/jbisrir-2015-2304
Pollach (2005): Pollach, I. (2005). A Typology of Communicative Strategies in Online Privacy Policies: Ethics, Power and Informed Consent. Journal of Business Ethics, 62(3). 221–235. https://doi.org/10.1007/s10551-005-7898-3
Powell (2007): Powell, T. (2007). A model for ethical practices in clinical phonetics and linguistics. Clinical Linguistics & Phonetics, 21(11-12). 851–857. https://doi.org/10.1080/02699200701576777
Regmi, Aryal, Kurmi, Pant, Teijlingen & Wasti (2017): Regmi, P., Aryal, N., Kurmi, O., Pant, P., Teijlingen, E. & Wasti, S. (2017). Informed Consent in Health Research: Challenges and Barriers in Low-and Middle-Income Countries with Specific Reference to Nepal. Developing World Bioethics, 17(2). 84–89. https://doi.org/10.1111/dewb.12123
Beal (2009): Beal, J. (2009). Creating corpora from spoken legacy materials: variation and change meet corpus linguistics. In Renouf, A. & Kehoe, A. (Eds.), Corpus Linguistics. (pp. 33–47). Brill | Rodopi. https://doi.org/10.1163/9789042025981_004
Robinson (2010): Robinson, L. (2010). Informed consent among analog people in a digital world. Language & Communication, 30(3). 186–191. https://doi.org/10.1016/j.langcom.2009.11.002
Ruijgrok (2013): Ruijgrok, B. (2013). Ethics Code for linguistic research in the faculty of Humanities at Leiden University. Retrieved from https://www.universiteitleiden.nl/binaries/content/assets/geesteswetenschappen/lucl/proposedethicscodelucl.pdf
Sabati (2019): Sabati, S. (2019). Upholding “Colonial Unknowing” Through the IRB: Reframing Institutional Research Ethics. Qualitative Inquiry, 25(9-10). 1056–1064. https://doi.org/10.1177/1077800418787214
Scoones (2016): Scoones, I. (2016). The Politics of Sustainability and Development. Annual Review of Environment and Resources, 41(1). 293–319. https://doi.org/10.1146/annurev-environ-110615-090039
Sterling & Gass (2017): Sterling, S. & Gass, S. (2017). Exploring the boundaries of research ethics: Perceptions of ethics and ethical behaviors in applied linguistics research. System, 70. 50–62. https://doi.org/10.1016/j.system.2017.08.010
Stygall (2010): Stygall, G. (2010). Guiding Principles: Forensic Linguistics and Codes of Ethics in Other Fields and Professions. International Journal of Speech Language and the Law, 16(2). 253–266. https://doi.org/10.1558/ijsll.v16i2.253
Tao, Shao & Gao (2017): Tao, J., Shao, Q. & Gao, X. (2017). Ethics-related practices in Internet-based applied linguistics research. Applied Linguistics Review, 8(4). https://doi.org/10.1515/applirev-2016-2024
Taylor & Bramley (2012): Taylor, H. & Bramley, D. (2012). An Analysis of the Readability of Patient Information and Consent forms used in Research Studies in Anaesthesia in Australia and New Zealand. Anaesthesia and Intensive Care, 40(6). 995–998. https://doi.org/10.1177/0310057X1204000610
Thomas & Pettitt (2017): Thomas, M. & Pettitt, N. (2017). Informed consent in research on second language acquisition. Second Language Research, 33(2). 271–288. https://doi.org/10.1177/0267658316670206
Villafranca, Kereliuk, Hamlin, Johnson & Jacobsohn (2017): Villafranca, A., Kereliuk, S., Hamlin, C., Johnson, A. & Jacobsohn, E. (2017). The Appropriateness of Language Found in Research Consent Form Templates: A Computational Linguistic Analysis. In Young, B. (Eds.), PLoS ONE, 12(2). e0169143. https://doi.org/10.1371/journal.pone.0169143
Yakura (2002): Yakura, E. (2002). “Informed Consent” and Other Ethical Conundrums in Videotaping Interactions. In LaVine, P. & Scollon, R. (Eds.), Discourse and Technology: Multimodal Discourse Analysis. (pp. 146–150). Georgetown University Press.

Tags: Ethics IRB Linguistics
Categories: Bibliography

Hugh Paterson III

Collaborative Scholar

I specialize in bespoke research at the intersection of Linguistics, Law, Languages, and Technology; specifically utility and life-cycle management for information products in these spaces.

Bibliography of select papers on 'ethics' and 'informed consent' in Linguistic research

References

Hugh Paterson III

Collaborative Scholar

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