Finding the PhD in Me: If We’re Hearing, Are We Listening?: Ethics in Research

Part 6 of the blog series Finding the PhD in Me. Read part 5 here.

By Bonita Squires, M.Sc., S-LP(C)

I am a “hearing” researcher. My investigative curiosity and life experiences have led me down a path towards investigating the intersection between language and hearing ability. This path is well trodden by other researchers, most of whom are also typically-hearing. Last December, I finalized the details of my PhD study design and procedures with my committee — which is composed entirely of typically-hearing researchers — and am now wrapping up ethics approval. You may be asking: what is ethics and why does it need approval?

Ethical conduct in research is imperative. As I step ever more confidently into the world of research, I find myself deeply pondering ethical issues. This is especially important when conducting research with underrepresented and/or disadvantaged populations. Before delving into why this might be, let’s examine the concept of ethics and what is involved in a formal research ethics review.

What is Ethics?

Informally, ethics are moral standards (i.e., how to be a good person in interactions with others). In the world of research, “others” includes participants, collaborating organization(s) and society as a whole[1]. Some would add that for a study to be ethical, it must also promote the aims of good science, keep researchers accountable to the public, help build public support for research and promote moral and social values[2]. Phew! It is a big job to ensure that no possible ethical stone remains unturned!

Ethical Practice on Paper

Every university has at least one ethics board that reviews all proposed research with people and animals. In my case, this is the Dalhousie University Research Ethics Board[3]. The formal process of ethics review is quite rigorous. The process involves a long application that covers everything that might affect the safety, comfort and rights of the participants. This includes justification for every choice made in designing the study, ranging from who can participate to the exact wording used in recruitment flyers. We are required to describe in detail what is asked of participants during data collection and must show that we have carefully thought through how the participant data will be protected and ultimately destroyed. The researcher must even justify the need for the study at all, as no participant should go through the efforts of participating in a poorly designed study.

My collaborating organization, the Atlantic Provinces Special Education Authority[4], has a similar ethical review process for research that involves students who are Deaf or hard-of-hearing (DHH) on their caseload that also addresses concerns specific to the organization, such as the time commitment required of their staff. Finally, as I will likely recruit children who are not DHH through the local school board, I will need to follow its ethical review process. The entire ethical review process will take me about three months from start to finish and is an essential part of developing an ethical study.

Other Ethical Considerations

Power Dynamics

One issue that is critical to consider is the power dynamic inherent in the relationship between researcher and participant. Tragically, there is a long history of unethical research in which research participants were not properly informed about risks or were not even given the option to refuse participation[5]. With regards to participants who are deaf, Deaf or hard-of-hearing, we cannot deny that individuals who are DHH experience substantial barriers and discrimination within this hearing-centric society, which will inform the degree to which they will trust that the typically hearing researcher will have their best interests in mind.

Miscommunication and Misinterpretation

With typically hearing researchers, there is the risk that research with participants who are DHH will be designed, conducted and presented entirely through the typically-hearing lens. For example, the researcher may not properly adapt a test for appropriate accessibility, leading to miscommunications and misinterpretations of the results. Given thoughtful collaboration with researchers and consultants who are DHH themselves, these threats to the validity of the research can be avoided.

Recognition of Bias

I am typically-hearing and have been all my life. This bias cannot be avoided — I am not one of “us” in “nothing about us, without us.” Therefore, I am in constant reflection of where I sit within this field of inquiry and how I may be biased in my view of the world and consequently, the implications of my findings.

Tips for Typically Hearing Researchers

Take proactive steps to engage people who are DHH at all stages of the process
Recognize your hearing privilege and reflect on your biases
Recognize that participants who are DHH are not defined by their hearing status
Seek out diverse perspectives on interpreting your data

As I progress through my research career, I will work towards getting the resources and connections that I need to be ethically responsible and to ensure that my findings make sense within the lived experiences of individuals who are DHH.

These issues will be on my mind over the next year as I collect and analyze data. Stay tuned for my next post on challenges in data collection with children who are DHH when using, adapting and interpreting language tests designed for typically-hearing children.

For guidance on the unique issues to consider when conducting research with culturally and linguistically Deaf participants, please consult the following resources:

Toward Ethical Research Practice with Deaf Participants by J. Singleton, G. Jones & S. Hanumantha (2014)

Nothing About Us Without Us: Navigating Engagement as a Hearing Researcher in the Deaf Community by D. Ferndale (2018).

References

[1] https://researchethics.ca/what-is-research-ethics/

[2] https://www.niehs.nih.gov/research/resources/bioethics/whatis/index.cfm

[3] https://www.dal.ca/dept/research-services/responsible-conduct-/research-ethics-/apply-for-reb-approval.html

[4] www.apsea.ca

[5] http://www.ors.umkc.edu/research-compliance-%28iacuc-ibc-irb-rsc%29/institutional-review-board-%28irb%29/history-of-research-ethics

About the author:

Bonita Squires, M.Sc., S-LP(C) is a speech-language pathologist who has chosen to focus on research training in lieu of clinical work. She began her PhD in Health at Dalhousie University in 2015. Her research interests are language, reading and the relationships between them in children who are d/Deaf or hard-of-hearing and typically hearing. In her past (professional) life, Bonita was an American Sign Language/English interpreter. She has been enriched by the language and life experiences that individuals in the Deaf and hard-of-hearing communities have shared with her. Bonita’s ongoing blog series, Finding the PhD in Me, shares some of her thoughts and the challenges she encounters as she navigates the doctoral journey.