Ethical Guidelines in Research and Medicine
Ethical principles, including consent, privacy, respect, and beneficence, form the foundation for research standards in various fields like medicine, psychology, anthropology, and linguistics. Explore the evolution of guidelines, such as the Nuremberg Code and Helsinki Declaration, ensuring ethical conduct and protection of participants in research endeavors.
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Claire Bowern Yale University (Chair, LSA Ethics Committee) claire.bowern@yale.edu
the agreed (good) values/customs particular community culture-specific time-specific changeable accepted codes basis for legal customs of a codes of good behavior legal system
Nuremberg Code Post-WWII Trials of war criminals 10 points for legitimate medical research Research only For the greater good With the consent of participants With appropriate preparation By people who are qualified Avoid harm and injury at all costs
Helsinki Declaration Guidelines for acceptable (medical) research behaviour Development of Protocols: Explicit consideration of ethical issues in the research project Protocols: Explicit consideration of ethical issues in the research project Distinction between research to help people and research for its own sake Risk assessment Must obtain consent (Preferably in writing)
Consent Privacy Respect for Persons Beneficence/Justice
At some point, the guidelines for medical research were extended to other areas clinical medicine <> medical research <> psychology <> anthropology <> linguistics Guidelines more or less caught up (Australia, Canada vs US) Special guidelines for working with Indigenous groups and vulnerable participants
Research on Human Subjects Research: to contribute to generalizable knowledge. Human subject: whom an investigator obtains identifiable private information through interaction or intervention. Research: a systematic investigation designed Human subject: a living individual about
What counts as generalizable? e.g. Folklorists successfully argued that what they do is not research under the legislation, and their work is not subject to human subjects review. How is folklore research different from collecting narratives in fieldwork?
e.g. Syntacticians who argue that they study patterns of language, not the speakers themselves
e.g. Community-based linguists who view their work as a collaboration with speakers, not as experimentation
IRBs expect: well-defined research stimuli prepared in advance a power differential that always works to the researcher s advantage risks that can be identified ahead of time that risks will accrue to the participant as an individual consent is obtainable and documented in writing
Questions are developed responsively in the encounter Subjects better identified as consultants or collaborators Power dynamics complex Terms of research are negotiated, rather than dictated by the researcher and consented to by participants
Boundaries between life and research become blurred Makes potential risks harder to assess Interaction framed by multiple ethical frameworks (cf Holton 2009) Therefore same protocol might work out quite differently in different field sites. (cf Rice 2006, Newman and Ratliff 2001)
my research is special my work is without risk IRBs don t understand my work IRBs just regulate medical research . (Laura Stark, Law and Society Review, Dec 2007)
Over-regulation common perception of IRBs and Social Sciences Under-regulation Probably more common Since ethics is more general than the IRB legislation, and since many fieldwork encounters are cross-cultural, it follows that there will be many areas which the IRB doesn t touch
treat individuals as autonomous agents allow people to choose for themselves Therefore, get people s consent participate, make sure that consent is informed confidentiality for vulnerable participants consent to informed, protect privacy confidentiality of data, offer extra protections vulnerable participants. privacy of individuals and
How do you do that when individuals arent fully autonomous agents? Community-wide decisions for documentation/research. Consultants may not feel qualified to speak on behalf of the community.
How can we be sure the consent is fully informed and not coerced?? How can we be sure that the consent doesn t jeopardize the research? E.g. by revealing too much about the material being tested? By exaggerating the perception of risk.
There are situations where IRB review can be beneficial to the linguist: Might be the only time the linguist considers these issues explicitly and concretely Consistency check Statement of what the linguist has promised type of contract
Stakeholders in fieldwork Researcher Research participants Their community Researcher s supervisor [if student] The wider field of linguistics Grant bodies The taxpayer Issues of stakeholder rights come up in collaborative fieldwork.
Cf Eira (2008) for Australia Expectations: Reciprocation Community calls the shots (determines the direction of research) Highly applied; research must have direct, tangible benefit to that community Documentation for revitalization No research for its own sake Long-term commitment Context Severe language endangerment Lack of community access to previous research Assertion of rights to self-determination in all areas
Better documentation when speakers are more engaged Increasing the community stake in the language Giving back and setting a good example.
Good revitalization requires good documentary materials; spending a lot of time on revitalization might not be the best use of the linguists time in the long term (Bowern 2008: language revitalization isn t just about language). The current form of the collaborative paradigm puts all the risk on the linguist; community responsibilities are unclear. This isn t collaborative.
Still assumes that the researcher is from outside the community (cf. giving back ). How does this apply to researchers who work on their own languages? Assumption that communities aren t interested in research for its own sake is second-guessing.
What are the ethical questions we should think about beyond the field and the fieldworker s interaction with the field site?
Is it ethical to send a student to a risky field site? How much support should supervisors give their students in the field? when the problems might not be related to linguistics. when the supervisor might not have much local knowledge.
Ethics has a legal component: linguistic research is regulated by IRBs. But ethics is also broader than that: there is a substantial moral component beyond the regulation. IRB review is important: but it s not the whole story. Emergent research doesn t always fit too easily within the regulatory frameworks. Emergent/collaboratory work has its own assumptions and ethical issues that need addressing.
