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Applying Place to Research Ethics and Cultural Competence Training0

 

In the 1990s, I worked with many community groups and Native American/African-American communities on the difficult challenges of understanding environmental health risks from low-level radiation contamination. These place-based communities and cultural groups were downwind from nuclear weapons production facilities which had massive deliberate and accidental releases of radiation since their operations began during and after World War II. In the health organizing work I had conducted, I was not aware of the potential of research ethics guidelines to bring more beneficence and protection to these populations and their geographic communities. Soon after formal ethical investigations produced findings of cultural ignorance and a lack of knowledge of research ethics by many researchers involved with human radiation experiments, I decided to pursue doctoral studies to promote ethical protections for place-based communities. After receiving my PhD and doing some extensive studies of bioethical principles and their potential to be applied to groups/communities and place, I have been able to publish new studies/practices in this area. With much support both from National Institute for Health and the National Science Foundation and their grant programs on research ethics training, I have worked with several collaborators to promote research ethics training for graduate students in environmental health/sciences, natural resource sciences and engineering (Quigley et al 2015, see NEEP website http://www.brown.edu/research/research-ethics/neep).

In this blog, I provide a discussion of human subjects protections being extended to the protection of the spatial setting, the place-based identities and meanings of individual and group human subjects in their local communities. In a recent paper (Quigley 2016), I argued for this protection both from recommendations that already exist in bioethical guidelines (National Bioethics Advisory Committee (NBAC) and Council for the International Organization of Medical Sciences (CIOMS) and from field studies that demonstrate important lessons for protection of place and place-based identities. The bioethical principles of beneficence, nonmaleficence, respect for persons/respect for communities and justice are reviewed in this article with detailed guidance about each principle as it relates to protecting place and place-based identities.

  • Regulatory guidance exists in terms of the need for researchers to provide benefits to researched populations, to reduce exploitation particularly to racial/cultural and resource-poor groups who are vulnerable subjects, and to allow community consultation on the risks and benefits of research designs. Many resource-poor and politically powerless communities are directly dependent on the subsistence resources of their local spatial settings. Research interventions should not harm these conditions but instead produce beneficial change. Reasonably available benefits should be determined with local representatives (health care providers, community representatives, advocacy groups, scientists and government officials). Such consultation will help to reduce harms, particularly relevant to indigenous groups when the social risks of research can cause disrespect of cultural beliefs, traditions, world views, the violation of local protocols, social stigmatization, and discriminatory harms. For example, in studies of landscape planning, academic researchers co-collaborated with Native community leaders to adopt community-based designs on walking/bike paths, community gardens, mixed use and conservation with housing needs (Thering 2011). Dangles et al (2010) worked with community consultation to ensure that environmental monitoring for control of pests in Andean potato farming and for climate and soil conditions was conducted with community members and particularly with the youth who received training on monitoring technologies which helped to improve youth training opportunities and reduce youth migration. With community collaboration, local community-based benefits can be identified and integrated into technical research plans to improve beneficence.

, I have described how research interventions with cultural groups do require a deep study and practice of an “environmental” cultural competence by researchers, particularly for place-based identities, meanings and past conditions (Quigley 2016b).

There are abundant field studies on new participatory approaches to field research with local communities (see Bibliographies on NEEP website), many of which incorporate collaborative learning about place-based meanings which then lead to research designs which produce local benefits along with technical research activities (capacity-building, skills development, youth outreach, access to critical services, local knowledge guidance about local conditions/resources) These community-based and culturally-competent interventions help to promote the “justice” principle, achieving fair representation, recruitment and fair benefits/burdens for these place-based settings. IRBs are learning more about social risks and community-based protections to ensure more fair treatment, fair benefits and to reduce unintended harms to researched communities.

References

Quigley, D. D. Sonnenfeld, P. Brown, L. Silka, Q. Tian. L. He. Research Ethics Training on Place-based Communities and Cultural Groups. Journal of Environmental Studies and Sciences, DOI 10.1007/s13412-015-0236-x , published online, March 29, 2015.

Quigley, D. (2016a) Applying Place to Research Ethics and Cultural Competence/Humility Training. Journal of Academic Ethics, published online 13 January, Springer

Quigley, D. (2016b) “Building Cultural Competence in Environmental Studies and Natural Resource Sciences”. Society and Natural Resources, 29:6, 725-737.

Contributor
Dianne Quigley, PhD is an Adjunct Assistant Professor at Brown University’s Science and Technology Studies Program and can be contacted at Dianne_Quigley_1@brown.edu

This post may be cited as:
Quigley D. (2016, 22 August) Applying Place to Research Ethics and Cultural Competence Training.Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/applying-place-research-ethics-cultural-competence-training

Technology research in sensitive settings: A workshop on ethical encounters in HCI1

 

In May this year, a group of researchers gathered in San Jose, California, to attend a workshop on “Ethical Encounters in HCI”. HCI is human-computer interaction, an interdisciplinary field of research that covers a broad spectrum of activities, ranging from ethnographic research that aims to understand people to inform design, to lab-based studies that aim to develop and evaluate new technologies.

Why worry about ethics in HCI?

The field of human-computer interaction emerged in the 1980s, when personal computing was in its infancy. This was a time when computers sat on desktops, usually in the workplace. Initially, the aim of this nascent field of research was to create usable and efficient systems that supported people’s work activities. Much of the work in HCI at the time was conducted in laboratory settings or the workplace, with an emphasis on reducing errors and improving efficiency as people – or ‘users’ – learnt to perform tasks using computers.

Fastforward 30-plus years and computing has moved off the desktop and expanded into every realm of our lives. HCI, too, has expanded. No longer confined to the office or laboratory, HCI research has moved into the home and beyond, into settings where doing “ethical research” means more than getting your participants to sign a consent form (Bruckman, 2014). It is not unusual now for HCI researchers to conduct fieldwork in places like hospitals, schools, and residential care facilities, and to work closely with participants who might be considered vulnerable, such as people experiencing homelessness, chronic illness, or recent bereavement. Research in these settings can be rewarding and valuable, but also fraught with concerns about how to ensure the research is conducted in an ethical manner. In these settings, we can’t always predict and plan for every contingency, and there is not always a clear right or wrong way to proceed when researchers encounter a dilemma (Munteanu et al, 2015). In addition, HCI research might involve not only working closely with people to understand their lives, but also designing and implementing new technologies. We cannot always predict the impact these technologies will have on people’s lives and we have to be especially mindful of the possibility of unexpected negative effects when working in sensitive settings (Waycott et al, 2015). Social media, too, has highlighted the complexity of ethics in HCI and technology research; many researchers are now using publicly available social media posts as research data, sometimes to explore sensitive topics.

Workshop outcomes

With these challenges in mind, we gathered in San Jose to discuss the common ethical issues people have faced when doing this research and to explore possible ways of addressing these issues in the future. The workshop, held as part of the International Conference on Human Factors in Computing Systems (CHI 2016), brought together HCI researchers working in sensitive and difficult settings who wanted to communally reflect on ethical issues they had encountered in their work.

Participants included a PhD student working on designing information systems for families of children in palliative care, researchers whose work aims to preserve the “voices from the Rwanda trial” in post-genocide Rwanda, and crisis informatics researchers who analysed Twitter posts to understand the role of social media during Hurricane Sandy. Prior to the workshop, participants submitted position papers describing their “ethical encounters”, available here: https://ethicalencountershci.wordpress.com/chi-2016/position-papers-chi-2016/

The workshop aimed to provide these researchers with an opportunity to discuss the challenges they have faced, and to brainstorm potential “solutions” and ideas that might help HCI researchers navigate ethical issues in the future. Challenges included:

  • tensions between meeting institutional ethics review requirements and managing situational ethical issues that emerge during fieldwork;
  • managing both participants’ and researchers’ vulnerability and wellbeing;
  • the temporal nature of consent (should consent be a one-off procedure, or something that we revisit throughout the research process?);
  • managing participant and stakeholder expectations about the technologies we design and introduce;
  • deciding what happens at the end of the project, and managing expectations around this;
  • working with stakeholders, gatekeepers, organizations, and being aware of inter-organizational politics;
  • deciding who gets to participate and who doesn’t; and
  • dealing with sensitive (yet public) data that can trigger difficult responses for researchers, participants, and others exposed to the research

These challenges can occur in any research that involves fieldwork in sensitive settings; but they can be exacerbated in HCI because researchers in this field may not have been trained in dealing with these issues, and because designing and introducing technology into these settings adds a layer of complexity to the research.

The workshop participants identified a number of ways of providing support to HCI researchers in the future. Suggestions included looking to other disciplines (e.g., anthropology, sociology) to see what lessons we can take from them; gathering together resources and cases from previous projects (e.g., building a database of consent forms and other documents); and developing a professional advisory group to provide guidance and to promote consideration of research ethics within the HCI community. Some of these suggestions are already being achieved through initiatives like AHRECS.

References

Bruckman, A. (2014). Research Ethics and HCI. In J. S. Olson and W. A. Kellogg (Eds). Ways of Knowing in HCI. Springer

Munteanu, C., Molyneaux, H., Moncur, W., Romero, M., O’Donnell, S., & Vines, J. (2015). Situational ethics: Re-thinking approaches to formal ethics requirements for human-computer interaction Proc. CHI 2015 (pp. 105-114): ACM Press.

Waycott, J., Wadley, G., Schutt, S., Stabolidis, A., & Lederman, R. (2015). The challenge of technology research in ‘sensitive HCI’. Paper presented at the OzCHI 2015, Melbourne, Australia.

Workshop information:

https://ethicalencountershci.wordpress.com/

Waycott, J., Munteanu, C., Davis, H., Thieme, A., Moncur, W., McNaney, R., . . . Branham, S. (2016). Ethical Encounters in Human-Computer Interaction. Paper presented at the Proceedings of the 2016 CHI Conference Extended Abstracts on Human Factors in Computing Systems.

Contributor
Jenny Waycott is a Lecturer in the Department of Computing and Information Systems at the University of Melbourne. After completing her PhD at the Institute of Educational Technology, The Open University UK, Dr Waycott has worked on several projects in the fields of human-computer interaction and educational technology. Her research is broadly concerned with understanding the role technologies play in people’s learning, work, and social activities. Her recent work has focused on the design and use of social technologies for/with older adults, ethical issues in the design and use of new technologies in sensitive settings, creative uses of new technologies for social inclusion, and the use of social technologies in higher education. For more information see: http://www.jwaycott.com/
jwaycott@unimelb.edu.au

This post may be cited as:
Waycott J. (2016, 29 July) Technology research in sensitive settings: A workshop on ethical encounters in HCI’. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/technology-research-sensitive-settings-workshop-ethical-encounters-hci

Reflections on case: ‘Racist bus drivers project’0

 

All views expressed in this post are my own and not of my employer, the national committees which I have served on, nor my consultancy clients

The case relates to action taken by University of Queensland against Prof. Paul Frijters because of his alleged conduct of a project without appropriate ethical clearance. The project related to the deception of participants (Brisbane bus drivers) and the dissemination of findings that reflected on them poorly as a cohort. The Bissert determination overturned UQ’s actions on procedural grounds without comment on the underlying ethical issue of the conduct of the project without the appropriate ethical clearance.

It is understood (see http://www.brisbanetimes.com.au/queensland/uq-suppressed-bus-racism-study-academics-20150226-13q5lu.html) that Prof. Frijters disputes that university ethical clearance was required. The determination does reflect to some degree on the process followed to determine whether research ethics review and ethical clearance was required (e.g. provisions 286, 291 and 322-336). However it does not proffer a view as to whether prior research ethics review was required.

The substance of the Fair Work Act determination is that UQ failed to adhere to the misconduct provisions of its enterprise bargaining agreement, the framing its own research misconduct processes and denied Prof. Frijters procedural fairness.

The determination (pp21-22) rejects UQ’s assertion that the research misconduct procedure is exempt from the requirements/rights/redress articulated by the relevant enterprise bargaining agreement (EBA).

The case highlights the importance of carefully describing the interface between research misconduct procedures vis-à-vis the Australian Code and misconduct procedures as described in the Academic EBA (and indeed the general staff EBA for research assistants and student misconduct policies). This is perhaps most acute when the research misconduct process will be making the substantive determination that there is ‘a case to answer’ and the EBA process will largely be an operational application of punitive consequences of the finding of a case to answer.

The case also highlights that correspondence from a respondent (such as disputing the process or the findings of the reviewing officer) should be considered both in terms of its research integrity and its human resources (i.e. EBA process) implications. Another matter Bissert found troubling was the replacement and appointment of supervisors to Prof. Frijters, especially given the important role of supervisors described by the misconduct procedures.

The implications of the determination by Bissett are:

  1. the conduct of procedures to determine facts (e.g. whether research misconduct appears to have occurred) may be externally judged with regard to the appropriate industrial instrument (e.g. the academic EBA) even if a university contends those processes are specifically intended to operate outside of the EBA;
  2. (in light of i) the process for determining the review officer and decision maker may need to be more carefully framed;(*)
  3. (in light of i) a respondent should have access to a union or other representative;
  4. reviews and the provision of outcomes to respondents should be dealt with in a timely manner;
  5. correspondence from a complainant expressing dispute with proceedings should always be considered by a Human Resources Department staff member (to determine the EBA implications of the matters raised).

This may necessitate a complete rethinking of the approach many universities take to ‘Part B’ proceedings and allegations. The matters to consider include research integrity (e.g. adherence to the Australian Code), human resources (e.g. with regard to misconduct proceedings articulated by the relevant EBAs), and institutional compliance (e.g. as per the ARC/MHMRC deeds of agreement and annual compliance reporting).

Largely lost (except for provisions 286, 291 and 322-336) throughout the discussion about correct procedures and the EBA is the degree to which failure to seek ethical clearance is a serious matter especially as the project involved overt deception and risk. It also involved ‘agents acting on behalf of the researchers’ unlawfully seeking to evade paying for travel. The assessment of these matters requires a sophisticated understanding of the National Statement on Ethical Conduct in Human Research and Australian Code for the Responsible Conduct of Research. Arguably it appears the University did not adequately consider whether social science research (at least from one academic area) is being correctly submitted for prior research ethics review.

Update 15/06/16 – UQ economist Paul Frijters quits over strife from race study

(*) It is not entirely clear why the Head of School, as Prof Frijters’ line supervisor was not an appropriate person to conduct the investigation. At various points in the process, different reasons were offered. 

Contributor
Dr Gary Allen is a Senior Policy Adviser in the Office for Research at Griffith University
Click here for Gary’s AHRECS bio

This post may be cited as: Allen G. (2016, 13 June) Reflections on case: ‘Racist bus drivers project’. Research Ethics Monthly. Retrieved from:
https://ahrecs.com/research-integrity/reflections-case-frijters-vs-uq-racist-bus-drivers-project

A Note on the Importance of Sensitising the Novice Researcher to the Realities of Ethics in Practice0

 

Discussions of research ethics have begun to centre increasingly on how research guidelines translate into ethical practice during the research process. In the paper which prompted the invitation to contribute to this blog (McEvoy, Enright & MacPhail, 2015), my experiences as a novice researcher conducting focus group interviews with a group of young people are illustrated and discussed. The consequence of a limited experiential base in research and not having previously read deeply on the topic of research ethics was that I encountered difficulties in recognising or determining the best course of action when faced with what Guillemin and Gillam (2004, p. 263) refer to as ‘ethically important moments’ in the research situation.

It is clear that unless researchers are sensitised to how research practices such as confidentiality, informed consent, etc. manifest in research encounters, on-the-spot decisions can test the veracity of a research project’s ethical promises. I am certainly not suggesting that experienced researchers hold the monopoly on research ethics, or that it is not possible for novice researchers to behave ethically. Rather, due to the immediacy of ethically important moments it is often a researcher’s instincts or reflexes which are operative. Therefore, just as when we learn any skill and certain elements become automatic with experience, it is important that researchers starting out on their careers are given every opportunity to develop and challenge their ethical practice in a way that ensures that those elements of their practice which become ingrained have the best chance of being ethically sound.

In reflecting upon the ethically important moments I encountered, and in reading the associated literature, I certainly improved my ethical sensitivity and understanding of how ethics are enacted in practice. However, from the perspective of the research participants in the given project, it was far from ideal that my learning was the product of ethical difficulties in the field. So how might novice researchers hone their skills and reflexes without exposing research participants to the possibility of ethical breaches borne of inexperience? We may certainly begin by providing research students with a wealth of examples of ethical dilemmas, discussing our research encounters with them, what we did or didn’t do, said or didn’t say, and prompting them to question what they would do or say in the given situation. Further, we can ensure that we educate novice researchers regarding the deeper thinking behind the principles of research ethics and the various ethical stances that abound (e.g. virtue ethics, relational ethics, feminist ethics, situational ethics, etc.) so that when faced with a less clear-cut ethical dilemma they will have the resources to adapt to the context by upholding the spirit of a given principle. The immediacy of the research situation requires instant decisions but that same immediacy results in the likelihood that such decisions are in fact the result of that which comes before the research situation itself. It is perhaps in the preparation that ethics is won or lost.

References:

Guillemin, M., and Gillam, L., (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 20, 261.

McEvoy, E., Enright, E., & MacPhail, A. (2015). Negotiating ‘ethically important moments’ in research with young people: Reflections of a novice researcher, Leisure Studies, doi: 10.1080/02614367.2015.1119877

Eileen Mcevoy
PhD student at the University of Jyväskylä, Finland and also works as a research co-ordinator in Ireland. She has co-ordinated research projects at the Physical Education, Physical Activity and Youth Sport (PEPAYS Ireland) Research Centre, as well as various other Irish educational institutions.
epmcevoy@gmail.com

This blog may be cited as:
Mcevoy, E. (2016, 22 April) A Note on the Importance of Sensitising the Novice Researcher to the Realities of Ethics in Practice. Research Ethics Monthly. Retrieved from https://ahrecs.com/human-research-ethics/note-importance-sensitising-novice-researcher-realities-ethics-practice

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