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Building beneficial relationships when conducting research with migrant communities0

 

In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.

One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?

Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.

The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.

Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.

Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:

Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.

Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.

Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk

This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities

Professional ethics0

 

As a follow up on Strategies for resolving ethically ambiguous scenarios last month below is a reprint of a discussion piece by AHRECS senior consultant Colin Thomson

In the first column in this series, the circumstances in which the ethics of health professionals emerge were identified as being a member of a profession and the context of health care. This third column examines the subject of professional ethics in more depth, focussing on matters that are generic to any health profession.

What is a profession?
Although there is no agreed definition, the Australian Consumer and Competition Commission and the Australian Council of Professions have developed the following useful definition of this concept:

A disciplined group of individuals who adhere to high ethical standards and uphold themselves to, and are accepted by, the public as possessing special knowledge and skills in a widely recognised, organised body of learning derived from education and training at a high level, and who are prepared to exercise this knowledge and these skills in the interest of others.

Inherent in this definition is the concept that the responsibility for the health and welfare and safety of the community shall take precedence over other considerations (i).

This identifies the elements that distinguish the ethical character of the professional-patient/client relationship from other relationships. These are the special knowledge and skill of professionals and the exercise of these in the interest of others.

Special Knowledge and Skill
Because professionals have special knowledge and skill, their relationships with patients and clients have been assumed to be unequal: the professional has knowledge that the patient does not. In non-professional relationships, such an inequality can place the uninformed at risk of being influenced, persuaded or exploited. In such relationships, no clear ethical obligations apply to such use of a superior position, and although society recognises the risks of being “conned”, it does not impose ethical obligations. When there is sufficient harm, common law principles that protect against fraud or statutory rules about fair trading can apply. By contrast, professionals are required to use their superior knowledge and skill in accordance with ethical obligations.

In the interest of others
The key ethical obligation of professionals is to use their knowledge and skill in the interests of, or in the health sphere, for the benefit of others, namely their patients or clients. Where professionals use the superior position that their superior knowledge and skill gives them, for their own benefit, they are exposed to professional sanctions. Using a professional relationship for sexual gratification or financial gain unrelated to expert services are gross examples of such conduct and can lead to loss of professional credentials.

From beneficence to respect
The emergence of medicine as a distinct body of knowledge and skill was closely followed by early expressions of the ethics of health professionals, notably by Thomas Percival. Although the obligation to use that knowledge and skill for the benefit of patients was recognised, the benefits of medicine were not then well established. As these benefits increased, this ethical obligation increasingly emphasised the patient’s benefit, an expression of the ethical principle of beneficence or to act for the benefit of others. When this becomes the dominant motivation in a relationship it can become paternalism, as expressed in the aphorism “doctor knows best”.

In the last four decades, as the result of a complex interaction of social factors, the prominence of beneficence has gradually been replaced by the ethical principle respect for autonomy. Although this can be described as a reaction to the undue emphasis on beneficence that became paternalism, the causes are more complex. Nonetheless, respecting a patient’s capacity and entitlement to make decisions about their healthcare has become central to professional ethics in health care.

Respect and beneficence: professional “distance”
The rise of respect for autonomy can present health professionals with another tension: that between respect for a patient’s views and the compassionate desire to achieve a patient’s maximum welfare. In non-professional personal relations, personal attachment and love freely allows such a desire to be expressed. By contrast, expressing compassion can be difficult for professionals because of the detachment and structure required by their relationships with patients. We are free to say we love our friends and family and that love explains our devotion, but professionals are not similarly free and need to express their commitment and compassion through an ethical structure that can feel impersonal.

(i) http://www.accc.gov.au/content/index.phtm/itemId/277772 (accessed 10 December 2009

Republished with permission of the Australian Hospital & Healthcare Bulletin, http://www.hospitalhealth.com.au/subscribe

Contributor
Prof Colin Thomson is one of the Senior Consultants at AHRECS. You can view his biography here and contact him at colin.thomson@ahrecs.com

This post may be cited as:
Thomson C. (2017, 14 July) Professional ethics Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/professional-ethics

iDARE: [innovation.design.arts.research.ethics]0

 

I dare you?

CREW Activity (iDARE conference September 2016)
Image: Caitlyn Parry

iDARE involves a team of designers and visual and performing artists and theorists from across Australia who have asked the question: How do we prepare artists for real world practice where there are no ethics committees to guide them and where and they are responsible for developing their own ethical framework in their work? In late 2015, this team won OLT funding for a University of Melbourne led project Developing new approaches to ethics and research integrity training through challenges posed by Creative Practice Research [ID15-4776].

A little context: Higher degree research (HDR) in creative practice (including creative and performing arts, and design) is a relatively new research field in the academy. The creative practice PhD has only existed since the 1990s when creative arts training became part of a unified higher education system as a result of the Dawkins reforms. As researchers, creative arts research practitioners enrolled in the creative practice PhDs have become subject to the university’s research ethics processes and procedures if their work involves human and animal subjects, while in “real world” practice this is not the case (Bolt et al, 2010: 6). The iDARE team are concerned with the question of developing “ethical know-how”: how ethical practices are enacted in creative arts research and beyond its disciplinary boundaries. Our aim is to support research and reposition “ethics” as being at the forefront and centre of innovative creative research practice rather than a problem to be avoided.

As part of the project, we held a national iDARE conference in September 2016, where around 100 creative practitioners, candidates, academics and ethics administrators and managers descended on Melbourne to discuss and debate the intersections of creative practice research and ethical “know-how”.

Over the two days of the conference:

CREW Activity round table (IDARE conference September 2016)
Image: Kate Robertson

The response to the conference was so enthusiastic that we put out a call for papers and have had over fifteen essays that address issues such as developing ethical know how, relationality and ethics, institutional ethics and creative practice research, ethics in practice and etho-aesthetics. Watch this space for the publication!When aesthetics meets ethics in artistic research and art based research

Ethics is at the forefront and centre of innovative creative research practice but how do we equip our graduate students with the ethical knowhow to make ethical decisions in their practices as creative arts practitioners? How do we shift perceptions and practice around ethics, beyond institutional ethics and risk management? How can we encourage institutions to take on the notion of “a situated ethics” that will help prepare our graduates to become ethical and innovative practitioners in the “real world”?

Over the last 18 months the research team (http://idare.vca.unimelb.edu.au/about-idare/about-the-project/researchers-and-partner-institutions/) has been working on this through the conference, a series of workshops, interviews and surveys and the development of the website iDARE (http://idare.vca.unimelb.edu.au/). Over the life of the project, we will publish on the iDARE website some of the deliverables for the project. These deliverables include:

  • a mapping of current university practices through audit and case studies
  • professional development for candidates, supervisors and ethics administrators is being developed and trialled through workshops with evaluation.
    • University of Melbourne (February 2017) as a part of VCA_MCM Staff planning day
    • RMIT (March 2017)
    • Edith Cowan University (April 2017)
    • Federation University Australia (April 2017)
    • London workshop (June 2017) Bartlett School (UCL) and Slade School of Fine Art (UCL)
    • UNSW (September, 2017)
    • University of Wollongong (September, 2017)
  • a pedagogical toolkit (in progress) http://idare.vca.unimelb.edu.au/
  • University of Melbourne ethics library guide for visual arts The University of Melbourne Lib Guide is a Library resource that can be customised to your resources by any university library using the SpringShare platform. We are keen for this to be shared across the academy and so ask you to share with your librarian. http://unimelb.libguides.com/c.php?g=402830&p=3063140
  • establishing a community of practice through engagement in the conference, workshops and the CREW http://www.aelab.org/the-crew The Creative Research Ethics Workshop (CREW) is an ethics-in-action collaboration involving creative practice researchers from multiple universities. Through a call for Expressions of Interest the group formed to explore relationships between ethics and creative practice research. Starting in August 2016 with a two-day intensive workshop, the group continued and expanded through a month of weekly gatherings inside the Occupied exhibition at RMIT’s Design Hub, leading to a series of contributions to the iDARE conference, including an exhibition, workshop/performative events and a conference bag/kit. The CREW is still in progress and working towards some more exciting ethics-in-action collaboration activities.

We would love to hear about your experiences in ethics and advising creative practices researchers, if you would like to contribute we invite you to fill in our ethics administrator/manager survey: https://www.surveymonkey.com/r/ethics_admin_survey

The final report will be published on the iDARE website after lodging and the funding body’s approval and publishing. We expect this report to be published by mid 2018.

Activity prompt and response (IDARE conference September 2016)
Image: Caitlyn Parry

Support for this project has been provided by the Australian Government Office for Learning and Teaching.  The views in this project do not necessarily reflect the views of the Australian Government Office for Learning and Teaching.

CREW Activity (IDARE conference September 2016)
Image: Caitlyn Parry

Contributor
Megan McPherson
Project Manager | Developing new approaches to ethics and research integrity training through challenges posed by creative practice research
Professor Barbara Bolt | Associate Dean of Research
Bios – http://idare.vca.unimelb.edu.au/about-idare/about-the-project/researchers-and-partner-institutions/
Enquiries – mcpherson.m@unimelb.edu.au

This post may be cited as:
McPherson M and Bolt B . (2017, 22 May) iDARE: [innovation.design.arts.research.ethics]. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/idare-innovation-design-arts-research-ethics

Research Ethics in the Philippines: a personal journey0

 

My recall of the earliest encounter I had with research ethics is when, as a newly appointed faculty member of the department of obstetrics and gynecology of the College of Medicine (CM) of the University of the Philippines (UP) and concurrent attending at the Philippine General Hospital (PGH), I rushed to the office of the ethics research committee (known as the Research Implementation and Development Office or RIDO) of CM before the end of office hours one Friday. In my hand was a letter, addressed to the then chairman requesting approval of a study I was about to conduct. Attached to the letter was a one page synopsis of the research protocol. I was fortunate enough to catch him on his way out of the office, and doubly lucky he agreed to quickly browse through the papers I pushed in front of him. He then instructed the office secretary to stamp the letter “APPROVED”, and proceeded to affix his signature. It was in the early 1990’s!

His stamp of approval went a long way towards legitimizing the outcome of my research. I was able to collect and isolate N. gonorrhoea from commercial sex workers in Manila and Cebu, freeze dried all 92, and transport them hand-carried to the laboratory of at the University of Washington. It turned out, almost all the isolates were resistant to the standard first line drug (ciprofloxacin) at that time. Interestingly, a few months before, my collaborator from the US walked into our office looking for someone to work with. Apparently, a US male citizen had been diagnosed to have ciprofloxacin resistant gonorrhea infection. He admitted to having paid sex in Manila and Cebu prior to flying back home. Fate would have it that I was in the office when my collaborator walked in. And since my sub-specialty in obstetrics and gynecology is in infectious disease, the rest was history. I am including this in my narrative because ordinarily, researches with no international collaboration and/or funding would not warrant a mandatory ethics research committee approval. If the process I went through at that time could be construed as a legitimate one today!

Soon after I finished the gonorrhea study, I found myself being appointed by our department chairman to be the representative to the same ethics research committee (RIDO)! By then, in the early years of 1990, all basic science departments of CM and all clinical departments of PGH appointed representatives to RIDO. Meetings were conducted almost monthly to discuss and evaluate research protocols of faculty members who cared to submit their protocols. In those early times, these usually were those with external funding such as clinical trials, or those with international collaborations. I seem to remember the chair of RIDO would present a brief summary of the protocol at hand for the consideration of the members present. If there were no major objections, the research protocol gets approved, and the study will proceed. There didn’t exist written guidelines and standard operating procedures for RIDO. That was in the later years of 1990 and early years of 2000.

When the chair of RIDO retired from the College of Medicine, she recommended me as her replacement. By then, the beginnings of guidelines and standard operating procedures have been put in place. The developments in the interest and commitment to research ethics were being fueled not only within the walls of the academe (CM, PGH and UP), but also in the scientific community. The creation of the National Institutes of Health in UP Manila, whose mandate is to spearhead research at par with the international community, played a big role in upgrading the standards of research, and along with it, compliance to international standards of conducting ethical review of research involving human participants. A Fogarty International grant to UP Manila, whose prime mover was Professor Leonardo D. de Castro, PhD of the College of Social Science and Philosophy of UP Diliman, made it possible to create training programs which empowered the academe in bioethics. In fact in the early years of 2000, a Diploma course in Bioethics was approved and offered through the collaborative efforts of UP Manila and Diliman campuses. Unwittingly, for what I consider to be totally less noble reasons, I took the Diploma course. My main reason was not to help promote research ethics specifically. It was really more for my professional development. At that time, I was already a tenured faculty member. But the trend in the academe was for younger members, even though not yet tenured, to proceed to obtain masteral and even doctoral degrees. My thought at that time was I didn’t want to be upended by younger colleagues. So I enrolled and finished the Diploma course in Bioethics. A year thereafter, the full Masteral course was approved and offered. I proceeded to re-enroll for the same main reason and motivation. It took me several years and 3 extensions of the maximum residency rules of the University before I was able to finish and defend my thesis, and get my Masteral degree in Bioethics!

The prime movers of the bioethics program UP Manila were from the College of Medicine headed jointly by Dra Marita Reyes and Dra Cecilia Tomas. Equal collaborators of the program were Professor Leonardo D. de Castro of the Department of Philosophy, College of Social Science and Philosophy in UP Diliman, among others. The multi-disciplinary collaboration made it possible for many others to establish the Social Medicine Unit (SMU) of the College of Medicine to administer to the MS Bioethics program. It also paved the way for the establishment of a coordinated and integrated system of research ethics review in UP Manila, called the UP Manila Research Ethics Board (UPMREB).

The UPMREB created several panels, each one practically a research ethics committee, with jurisdiction over various sectors of UP Manila: faculty of the College of Medicine (who conduct most of the basic and clinical trials); resident and fellow doctors of Philippine General Hospital; and faculty and students of the various other colleges. Using the same guidelines and standard operating procedures, all the panels of the UPMREB are able to review, approve and monitor all researches in UP Manila. It was also around this time, after my few years as chair of RIDO, that intense preparations were made for the accreditation of RIDO by the Forum for Ethics Research Committees in the Asia Pacific (FERCAP). With the efforts of Dra Evangeline Santos, professor of Ophthalmology and co-graduate of mine from the Diploma in Bioethics program, assisted by other staff of the College of Medicine, FERCAP accreditation was achieved. Subsequently, UPMREB and all its panels achieved the same accreditation.

In the meantime, a law (Republic Act No. 10532), called the Philippine National Health Research System (PNHRS) was enacted in May 2013 to coordinate and integrate all stakeholders in health research in the Philippines. It is through the force of this law that the scientific community outside the University through the Department of Science and Technology (DOST) of the Philippine government, in collaboration with the Department of Education and Culture through the Commission on Higher Education (CHED) and the Department of Health, asked the NIH of UP Manila to implement a Memorandum Order which mandates that all research involving human participants shall undergo review by accredited ethics research committees (by December 2015). The DOST, through the Philippine Council for Health Research and Development (PCHRD), designated the Philippine Health Research Ethics Board (PHREB) as the policy-making body with regards to the establishment, registration, accreditation and regulation of research ethics committees in the country. Henceforth, all academic institutions, all hospitals and health care facilities, and all entities doing health and health-related research involving human participants should submit their studies to PHREB-accredited research ethics committees for review, approval and monitoring. The main objectives are to assure that research participants are not harmed (but benefitted), and that research outcomes are credible.

The PHREB, under the chairmanship of Professor Leonardo D. De Castro, created two important committees: 1). Committee on Information Dissemination, Training and Advocacy (CIDTA); and 2). Committee on Standards and Accreditation (CSA). CIDTA was initially chaired by Dra Rosario Tan-Alora, professor of internal medicine, bioethics and former dean of the college of medicine in the University of Santo Tomas. I had the privilege of being a member of her committee, which conducted trainings for nearly all hospitals and academic institutions in the country. Trainings programs were on Basic Research Ethics, on Good Research Practice, and on Standard Operating Procedures. The objective was to enable participants to create and work in research ethics committees of their respective institutions, be they hospitals or academes. Very recently, Dra Alora decided to turn over the chairmanship of CIDTA to me, although she continues to be an invaluable member/mentor. And more recently, CIDTA is preparing to embark on including a Good Clinical Practice module among its training programs.

The other committee (CSA), initially chaired by Dra Cecilia Tomas, has been in charge of setting standards for research ethics committees all over the country, registering them, and assessing them for accreditation. Three levels of accreditation have been established by CSA: Level 1 are research ethics committees capable of reviewing all types of protocols, except clinical trials; Level 2 are research ethics committees capable of reviewing even clinical trials but not those for products intended for registration with the Philippine Food and Drug Administration (FDA). Both committees had been busy the past 2 years. From a few accredited research ethics committees a couple of years ago, there are now 72 all over the country, many of them Level 3! (See http://ethics.healthresearch.ph for a complete listing)

The Philippine Council for Health Research and Development (PCHRD), recognizing the existence of research projects whose proponents may not be affiliated with institutions with accredited research ethics committees, and in fact providing funds for some such projects, reactivated the National Ethics Committee (NEC). Chaired by Dra Marita Reyes, the NEC is essentially a research ethics committee composed of multi-sectoral recruited volunteers, myself recently included representing the medical field, which reviews research proposals referred to it by the Department of Health and PCHRD. In 2011, the PHREB published the National Ethical Guidelines for Health Research, providing written, country-specific guidelines on the ethical conduct of researches on various fields. (See nec.pchrd.dost.gov.ph). Currently, a technical working group headed by Dra Marita V.T. Reyes, with me as one of the members, is in the final stages of updating the guidelines for 2017!

My personal journey in the world of research ethics continues in my newly-assigned tasks of handling classes in the MS Bioethics graduate program, specifically handling Research Ethics and Research Ethics Review classes. From the one-man, practically ambush approval of my very first international research collaboration, to the current legislated and well-established research ethics system, I have been a privileged witness, albeit by twists of fate more than intent design on my part in many instances, to the evolving developmental history of research ethics in the Philippines. This narration is by no means the complete accurate picture. It is a humble and modest attempt to share a part of my career in the academe as a professional doctor taking care of patients, teaching younger colleagues, doing research on the side, and performing administrative functions.

I am grateful to Dr Gary Allen for the opportunity.

Submitted 16 April 2017.
Revised 24 April 2017 after obtaining permission (and more accurate inputs) from the persons whose names were included in the article.

Contributor
Ricardo Manalastas, Jr., MD, MSc (Bioethics) is a professor of Obstetrics & Gynecology, Infectious Diseases and Bioethics at the College of Medicine, University of the Philippines, Manila, and Attending obstetrician gynecologist at the Philippine General Hospital.
He can be reached by email at rmmanalastasmd@me.com  | rmmanalastasmd@yahoo.com

This post may be cited as:
Manalastas R. (2017, 24 April) Research Ethics in the Philippines: a personal journey. Research Ethics Monthly. Retrieved from: https://ahrecs.com/uncategorized/research-ethics-philippines-personal-journey

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