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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://www.ahrecs.com/uncategorized/research-ethics-philippines-personal-journey

Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?0

 

Research ethics and integrity have always been at the forefront of my work, not only because the issues which I explore (self-injury, disability, gender and sexuality) are personal, sensitive and often stigmatised topics, but also because as a disabled, feminist researcher I have first-hand experience of the ways in which power, inequality and appropriation are often enmeshed in research methods and outputs. Conventional ethical protocols which originate in medical guidelines struggle to fully grasp and incorporate such ethical issues, as well as the dilemmas which emerge from social research more broadly. Ethical protocols rarely prompt a researcher to critically examine how issues such as power and marginalisation play out in social research, or even how to address specific issues emerging from their own project, such as how to respond to requests for specific information as in Anne Oakley’s (1981) now infamous research with first time mothers. Ethical review more often consists of tick-box protocols, which ultimately function to restrict who and what can be researched rather than to promote ethical skills, competencies and practices (see Inckle, 2015).

This mismatch between my own ethical sensibilities and the conventions of research ethics were so vast that, during my PhD research, I struggled to conceive how any research could ever be fully ethical and I became stymied with anxiety and doubt (see Inckle, 2007). Happily, since then, I have joined a research ethics committee, taught research methods and ethics, conducted, supervised and even participated in social research. As a result, I have become more reconciled with (although no less sensitive to) the possibilities of research being both an ethical and positive experience for all those involved – albeit when based on a reflexive, ethical sensibilities rather than rigid, pre-defined protocols.

Nonetheless, when I joined my current institution and discovered that ethical review operated on a self-assessment basis http://www.lse.ac.uk/intranet/researchAndDevelopment/researchDivision/policyAndEthics/ethicsGuidanceAndForms.aspx my first response was to laugh, a lot. Isn’t the whole point of ethical review, I chortled, to provide oversight and accountability via external reviewer/s? How does simply completing a self-assessment form ensure ethical competency? Isn’t this just another example of the corporatized university gone mad, where academics take on more and more administrative duties in a role of ever-increasing responsibilities and ever-diminishing autonomy?

However, with time, reflection and some experience – all of which are important ethical competencies! – my perspective on ‘ethical self-assessment’ has radically shifted. Firstly, self-assessment is not really a full description of this ethical review process. Student researchers require formal ethical validation from their supervisor, who acts as a proxy for the institution in granting approval and, in the case of staff research projects, the line-manager takes on this role. Furthermore, in certain situations, such as when required by an external funder or participating body, the researcher is compelled to present their work before a university ethics committee proper.

Secondly, while the ethical ‘self-assessment’ form requires the respondent to answer a number of fairly standard questions about their research project – including, whether deception will be used, are the participants ‘vulnerable’, will sensitive/personal issues be explored – the process nonetheless allows for nuanced and discipline-specific accountability. For example, rather than a ‘yes’ to any of these questions rendering the research unethical and in need of redesign, the researcher is invited to complete another section of the form providing further information which contextualises the project and outlines protective protocols. What is most important, is that these justifications and protections are reviewed in a discipline specific context, thus moving the entire process away from universalised assumptions and locating it within specific field of the researcher. For example, in a medicalised context a non-clinician interviewing those who are defined as ‘vulnerable’ by virtue of their experience of disability and/or self-injury would be considered highly problematic. Similarly, an insider-researcher with shared experience of such a ‘health’ or disability experience would be considered compromised in their role and unable to ‘objectively’ and reliably conduct the research. However, from a social sciences (and rights-based) perspective, using these kind of labels to position certain individuals as compromised and/or inadequate researchers is in itself unethical and discriminatory.

Indeed, ethical ‘self-assessment’ has proven beneficial for my current research regarding the health, identity and social impacts of cycling for people with physical disabilities, including its impacts on their experience of themselves as able/disabled. In a standardised context it is likely that a number of ethical problems would be highlighted with this project: exploring sensitive issues amongst a ‘vulnerable’ group; an insider-researcher (I am a disabled cyclist); and quite possibly the assumption that the topic is so anomalous as to not justify the research at all – it is a commonplace assumption (especially among medical professionals) that people with physical disabilities cannot cycle, despite it being significantly easier than walking or wheelchair propulsion for many disabled people http://www.wheelsforwellbeing.org.uk/. However, ethical ‘self-assessment’ enabled me to position myself, my research participants and the value of the research within a critical social science and rights-based perspective which locates disability as a social identity rather than an individual vulnerability. However, this does not mean that I have avoided thinking clearly and carefully about the ethical protocols. I have taken time to consider the research, it’s potential impacts at the individual, social and policy levels, and to work to ensure that it is a positive and empowering experience for all those involved (including me). I have also developed my information, consent and researcher commitment forms in line with best practice in feminist and sensitive research (Byrne, 2000; Inckle, 2007; 2015).

Overall then, my experience suggests that my initial incredulous laughter at the thought of ethical self-assessment was misplaced. In an era of increasingly regimented ethical protocols which unilaterally apply limited, discipline-specific assumptions across the entire research community, and thereby curb the possibilities of who can conduct research, about which topics and with whom, then discipline-specific ethical self-assessment provides a new opportunity for contextualised ethical review. This kind of approach, coupled with a nuanced, reflexive approach to the development of ethical competencies could offer a significant way forward for ethical review in the social sciences.

References

Byrne, A (2000) Researching One An-Other, pp.140-166 in A Byrne and R Lentin (eds) (Re)Searching Women: Feminist Research Methods in the Social Sciences in Ireland. Dublin: Institute of Public Administration.

Inckle, K (2015) Promises, Promises… Lessons in Research Ethics from the Belfast Project and ‘The Rape Tape’ Case, Sociological Research Online 20(1): 6 http://www.socresonline.org.uk/20/1/6.html

Inckle, K (2007) Writing on the Body? Thinking Through Gendered Embodiment and Marked Flesh. Newcastle-upon-Tyne: Cambridge Scholars Publishing

Oakley, A (1981) Interviewing Women: A Contradiction in Terms, pp.30-61 in H Roberts (ed) Doing Feminist Research. London: Routledge.

Contributor
Dr Kay Inckle
Course Convener in Sociology
LSE
Blog/Bio | K.A.Inckle@lse.ac.uk

This post may be cited as:
Inckle K. (2017, 24 April) Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?. Research Ethics Monthly. Retrieved from: https://www.ahrecs.com/human-research-ethics/ethical-self-assessment-excellence-reflexivity-corporatisation-gone-mad

Intuitive Research Ethics Training for Novices0

 

The pedagogy of teaching research methods, let alone research ethics, is an under-researched field. In this blog entry, two postgraduate students reflect on their classroom experience where our lecturer engaged his students in a qualitative research ethics course, using two novice ethnographers’ candid empirical studies as the basis for discussion. While it is more usual for students to be schooled in ethics via lectures and seminars, what was unusual in this course was assigning the readings without first introducing the students to ethical concepts such as autonomy, do no harm, respect for participants or beneficence.

After Rachel and Louisa introduced ourselves to the other three members of the course, the lecturer placed his audio recorder on the table and activated the red light before introducing the course. In the midst of the awkward silence, we remember looking over to the other students, feeling confused and uneasy. Little did we realise at the time that our lecturer was reproducing the Asch conformity experiment. As the lecturer outlined the course goals and the assessment, none of us were listening, still blinded by the red glare and feeling unusually perturbed. Finally, after a few minutes one of us broke the ice asking the obvious question, “is that ethical?” The lecturer seemed perplexed. Another student translated, “she means do you need our consent for the audio recorder?” “What do you mean by consent?” he asked. Thus began a very different way of learning about research ethics. The lecturer didn’t instruct us on ethics, he believed each person’s moral compass was their guide. His role was provocateur, the class’s role was to locate ethical dilemmas in the readings presented, allowing us to solve them in situ. By asking the question “is this ethical” we had passed his first test. With our permission, the weekly classroom discussions were recorded, and our actual process of consent was part of learning by doing. The raw data for the co-authored journal article Teaching research ethics as active learning details our journey.

Our next substantive task asked us to review a newspaper article describing a situation where a researcher posed as a visiting academic and interviewed staff about their working conditions without informing them that he was their next Vice Chancellor (Lynley 2016).

Lynley, B. (2016, February 3). Lincoln University horrified after undercover encounter with new boss – Education – NZ Herald News. New Zealand Herald.

We remember thinking, “he should have told them that he was the preferred candidate for VC”. Concerned that this researcher failed to declare his prospective identity, we classified this act as a conflict of interest. It is only at that moment we realised the intentions of the lecturer in the opening moments of the class, he had tried to capitalise on a power differential implicit within our group between lecturer and students. The key learning here was to establish “power” as the primary ethical dilemma of research ethics for sociologists. We knew that had any member of our class objected to the recording of our discussions, the audio recorder would have been removed. Whereas with the scenario depicted above, the future Vice Chancellor failed to extend such an opportunity to his participants. In this way, our learning in this Qualitative Research Ethics class was incremental.

The lecturer then asked us to take the perspective of a resident in a community that both Venkatesh and Goffman describe and then share with the class any moments where we felt an unease with the relationship between researcher and researched.

Goffman, A. (2014) On the run: Fugitive life in an American city. Picador, New York.

Venkatesh, S. (2008). Gang Leader for a Day: A Rogue Sociologist Takes to the Streets. New York: Penguin.

Our responses, our learning are detailed in our article:

Tolich, M., Choe, L., Doesburg, A., Foster, A., Shaw, R. and Wither, D., 2017. Teaching research ethics as active learning: reading Venkatesh and Goffman as curriculum resources. International Journal of Social Research Methodology, pp.1-11.

The lecturer had two other unstated learning objectives. First, he wanted to illustrate the importance of formal ethics review as integral to the research process. Neither Goffman nor Venkatesh had sought formal ethics review and the class concluded each would have benefited from doing so. However, the ethics review process would have missed many of the “big ethical moments” that emerged while doing research in the field. The lecturer’s second objective was to encourage students to write about their big ethical moments, reflexively, and we did.

Looking back at our first day of graduate school, the presence of an active audio recorder succeeded in providing us with the framework necessary for learning qualitative ethics. The materials selected for this ethics class, mainly Venkatesh’s and Goffman’s work allowed us to take our gut feelings one step further, to discuss and debate the ethical dilemmas presented until we were able to reflexively understand that these social science researchers could improve on their practices. We were therefore able to move from ‘Ah! There is something wrong with this’ to the reasons why it was wrong and how it could have been done better. The critical thinking skills we established as ethics students not only allowed us to dissect the works we read, but helped us to apply these concepts to our own research practices.

Contributors

Louisa Choe holds a PhD scholarship in sociology at the University of Otago conducting a mixed methods analysis of “Do the poor pay more?”
louisa.choe@otago.ac.nz

Rachel Shaw holds a MA scholarship in gender studies at the University of Otago conducting an oral history of the experiences of lesbians during the 1970s and 1980s in New Zealand.
shara267@student.otago.ac.nz

This post may be cited as:
Choe L, and Shaw R. (2017, 16 March) Intuitive Research Ethics Training for Novices. Research Ethics Monthly. Retrieved from: https://www.ahrecs.com/human-research-ethics/intuitive-research-ethics-training-novices.

‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality0

 

Anna Olsen, Research School of Population Health, ANU Julie Mooney-Somers, Centre for Values, Ethics and the Law in Medicine, University of Sydney
*Neither of us are lawyers and, as such, our interpretations are as social scientists and HREC members. Interested lawyers and legal scholars are encouraged to contribute!

Researchers’ promises of confidentiality are often easily and genuinely made. However, our experience in research ethics review (Julie through an NGO-run ethics review committee; Anna through formally constituted university and hospital human research ethics committees), in qualitative research and in teaching qualitative research ethics has led us to think about the limits of these promises.

Australian researchers generally rely on the National Statement (National Health and Medical Research Council, 2015) and Human Research Ethics Committees (HRECs) for guidance around ethical and legal conduct in research. For example, Chapter 4.6 in the National Statement notes that researchers may discover illegal activity and guides researchers and HRECs to consider what researchers might be obliged to disclose in a legal situation and how to best protect (and inform) participants of this threat to confidentiality.

The National Statement is currently under revision (National Health and Medical Research Council, 2016) and the review submitted for public consultation in late-2016 contains a proposal to include additional information on “Disclosure to third parties of findings or results” in Section 3 of the National Statement. Here the NHMRC explicitly state that: “There can be situations where researchers have a legal, contractual or professional obligation to divulge findings or results to third parties”. That is, researchers should concern themselves not only with the legal implications of revealing potential illegal activity, but any instance in which they may be asked to break participant confidentiality.

The recent review of the National Statement extends the NHMRC recommendations around potential data disclosure in a number of ways: it makes much more explicit that researchers (as opposed to HRECs or institutions) are responsible for understanding the risks to patient confidentiality: “researchers should be aware of situations where a court, law enforcement agency or regulator may seek to compel the release of findings or results”. Researchers are expected to anticipate legal risks to participant confidentiality by: identifying “(a) whether, to whom and under what circumstances the findings or results will be disclosed; (b) whether potential participants will be forewarned that there may be such a disclosure; (c) the risks associated with such a disclosure and how they will be managed; and (d) the rationale for communicating and/or withholding the findings or results and the relative benefits and/or risks to participants of disclosure/non-disclosure”. And, researchers should advise participants on legal risks to confidentiality and how they will be handled: “(a) have a strategy in place to address this possibility; (b) advise participants of the potential for this to occur; and (c) advise participants as to how the situation will be managed”.

For many researchers in health, legal risks are a very vague reality and legal intervention a remote threat. They may feel confident that their research does not and will not uncover illegal activity, or that their data would simply be irrelevant to a legal case. Or they may feel confident that they have taken sufficient steps to protect their participants’ confidentiality by following guidelines; researchers working in illicit drug use, for example.

Many Australian HRECs articulate the NHMRC guidelines on legal risks of disclosure to third parties by requiring that researchers inform participants that any data collected during research will kept confidential, “except as required by law”. In keeping with the ethical concept of informed consent, participants are thereby warned that researchers are not able to unconditionally offer confidentially. It has become clear to us that the intention of this phrase, to flag the legal limits of confidentiality, is not well understood by researchers (Olsen & Mooney-Somers, 2014).

The National Statement details some aspects of human research that is subject to specific statutory regulation however stresses that compliance with legal obligations is not within the scope of the National Statement: “It is the responsibility of institutions and researchers to be aware of both general and specific legal requirements, wherever relevant”. Moreover, in the document we are directed that it is not the role of a HREC to provide legal advice. It is relatively rare for Australian HRECs to provide explicit guidance on the relevant legal obligations for researchers, including: how they differ across jurisdictions; what protective strategies researchers could employ to better protect patient confidentiality; or how to best inform participants about the risks of legal action (Some useful HREC-produced resources are Alfred Hospital Ethics Committee, 2010; QUT Office of Research Ethics and Integrity, 2016) Criminology scholars have (unsurprisingly) considered these issues in their own field (Chalmers & Israel. 2005; Israel, 2004; Israel & Gelsthorpe, 2017; Palys & Lowman, 2014).

We believe there are real risks to participants, researchers and research institutions.

Recent international cases of research dealing with illegal activity becoming subject to legal action include The Belfast Project/The Boston Tapes (BBC News, 2014; Emmerich, 2016; Israel, 2014) and Bradley Garrett’s ethnographic work with urban explorers (Fish, 2014; Times Higher Education, 2014) (See also Israel & Gelsthorpe, 2017). On the whole, legal action was anticipatable in these cases as they involved illicit activities and the legal action was driven by law enforcement interest. In some instances, researchers took extensive steps to protect participant confidentiality. In other cases the promise of absolute confidentiality seems a little naïve (and in our opinion, perhaps negligent).

Perhaps of more concern are cases in which legal action was instigated by interested others, not law enforcement. Of particular interest to us are recent cases of tobacco companies using Freedom of Information laws in Australia to obtain research data from Cancer Council Victoria on young people’s attitudes to and use of tobacco, and an earlier attempt to seek data on adults from Cancer Council NSW (McKenzie & Baker, 2015; Schetzer & Medew, 2015). As these cases do not involve illegal activity, it is much less likely that researchers could have anticipated the specific legal actions that undermined participant confidentiality. (The tobacco industry has taken these actions in other countries (Hastings, 2015; McMurtrie, 2002)).

Our point here is that the promise of confidentiality should never be casually made. Researchers have an ethical obligation to think through what “except as required by law” may mean for each particular research project. Although it has been argued elsewhere that as professionals, researchers should be provided the same participant confidentiality rights as doctors and lawyers (Emmerich, 2016), the current state of affairs is that research data is not (necessarily) safe from legal, contractual or professional obligation to divulge findings or results to third parties.

References:

Alfred Hospital Ethics Committee. (2010, Updated September 2016). Alfred Hospital ethics committee guidelines: Research that potentially involves legal risks for participants and researchers. Retrieved from https://www.alfredhealth.org.au/contents/resources/research/Research-involving-legal-risks.pdf

BBC News. (1 May 2014). What are the Boston tapes? Retrieved from http://www.bbc.com/news/uk-northern-ireland-27238797

Chalmers, R., & Israel, M. (2005). Caring for Data: Law, Professional Codes and the Negotiation of Confidentiality in Australian Criminological Research. Retrieved from http://crg.aic.gov.au/reports/200304-09.pdf

Emmerich, N. (9 December 2016). Why researchers should get the same client confidentiality as doctors. Retrieved from https://theconversation.com/why-researchers-should-get-the-same-client-confidentiality-as-doctors-69839

Fish, A. (23 May 2014). Urban geographer’s brush with the law risks sending cold chill through social science. Retrieved from https://theconversation.com/urban-geographers-brush-with-the-law-risks-sending-cold-chill-through-social-science-25961

Hastings, G. (31 August 2015). We got an FOI request from Big Tobacco – here’s how it went. Retrieved from https://theconversation.com/we-got-an-foi-request-from-big-tobacco-heres-how-it-went-46457

Israel, M. (2004). Strictly confidential? Integrity and the disclosure of criminological and socio-legal research. British Journal of Criminology, 44(5), 715-740.

Israel, M. (6 May 2014). Gerry Adams arrest: when is it right for academics to hand over information to the courts? Retrieved from https://theconversation.com/gerry-adams-arrest-when-is-it-right-for-academics-to-hand-over-information-to-the-courts-26209

Israel, M., & Gelsthorpe, L. (2017). Ethics in Criminological Research: A Powerful Force, or a Force for the Powerful? . In M. Cowburn, L. Gelsthorpe, & A. Wahidin (Eds.), Research Ethics in Criminology and Criminal Justice: Politics, Dilemmas, Issues and Solutions. London: Routledge.

McKenzie, N., & Baker, R. (15 August 2015). Tobacco company wants schools survey for insights into children and teens. The Age. Retrieved from http://www.theage.com.au/national/tobacco-company-wants-schools-survey-for-insights-into-children-and-teens-20150819-gj2vto.html

McMurtrie, B. (8 February 2002). Tobacco companies seek university documents. Chronicle of Higher Education. Retrieved from http://www.chronicle.com/article/Tobacco-Companies-Seek/6959

National Health and Medical Research Council. (2015). National Statement on Ethical Conduct in Human Research (2007) Retrieved from https://www.nhmrc.gov.au/printpdf/book/export/html/51613

National Health and Medical Research Council. (2016). Public consultation on Section 3 (chapters 3.1 & 3.5), Glossary and Revisions to Section 5: National Statement on Ethical Conduct in Human Research (2007). Retrieved from https://consultations.nhmrc.gov.au/files/consultations/drafts/ns-section3-public-consultation.pdf

Olsen, A., & Mooney-Somers, J. (2014). Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs. Drug Alcohol Rev, 33(6), 637-642. doi:10.1111/dar.12140

Palys, T., & Lowman, J. (2014). Protecting research confidentiality: What happens when law and ethics collide. Toronto: Lorimer.

QUT Office of Research Ethics and Integrity. (10 Novembeer 2016). Participants and illegal activities. Retrieved from http://www.orei.qut.edu.au/human/guidance/illegal.jsp

Schetzer, A., & Medew, J. (20 August 2015). Cancer Council spends thousands fighting big tobacco over children’s survey data. The Sydney Morning Herald. Retrieved from http://www.smh.com.au/national/cancer-council-spends-thousands-fighting-big-tobacco-over-childrens-survey-data-20150820-gj3nh7.html

Times Higher Education. (5 June 2014). Place-hacker Bradley Garrett: research at the edge of the law. Retrieved from https://www.timeshighereducation.com/features/place-hacker-bradley-garrett-research-at-the-edge-of-the-law/2013717.article

Contributors

Anna Olsen is a Senior Lecturer at the Research School of Population Health, Australian National University. She leads a number of qualitative and mixed methods public health research projects, teaches qualitative research methods and supervises post-graduate students. Dr Olsen is an experienced member of formally constituted university and hospital human research ethics committees. https://researchers.anu.edu.au/researchers/olsen-phd-am

Julie Mooney-Somers is a Senior Lecturer in Qualitative Research in the Centre for Values, Ethics and the Law in Medicine, University of Sydney. She is the director of the Masters of Qualitative Health Research at the University of Sydney. An experienced qualitative researcher, teacher and supervisor, she has taught qualitative research ethics and sat on a NGO-run ethics review committee for six years. http://sydney.edu.au/medicine/people/academics/profiles/julie.mooneysomers.php and http://www.juliemooneysomers.com

This post may be cited as:
Olsen A, and Mooney-Somers J. (2017, 24 February) ‘Except as required by law’: Australian researchers’ legal rights and obligations regarding participant confidentiality. Research Ethics Monthly. Retrieved from: https://www.ahrecs.com/human-research-ethics/except-required-law-australian-researchers-legal-rights-obligations-regarding-participant-confidentiality

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