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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Ethical use of social media as a recruitment tool0

 

Building the Conversation

From this month we will start including posts about the ethical design of human research. Our intent is not to present these ideas as the definitive or only way to approach a particular challenge/need but instead as prompts to get us all – participants, researchers, reviewers, regulators, administrators and other stakeholders – discussing useful and helpful approaches to the design, research ethics review and conduct of human research.

There are numerous reasons why social media can appear an attractive way to reach potential participants – it may be free or at least relatively inexpensive, it is increasingly ubiquitous across a range of Australian age groups (Sensis, 2017), and can be a powerful way to build an ongoing connection with a cohort of potential participants.

A recent issue of The American Journal of Bioethics focussed on the ethics of using social media as research platforms. An article by Luke Galinas and his colleagues (Galinas et al., 2017) noted the lack of resources and regulatory guidance in the United States on the use of social media as a recruitment tool. They concluded that this was a significant problem since, for all its benefits, use of social media is not without ethical and practical challenges and traps. Fortunately, these are not insurmountable. Galinas’ article explored how biomedical researchers might respond in the United States by attending to the issues of researcher transparency and respect for the privacy of participants; in this blog post, we provide advice for Australian researchers and reviewers in an effort to stimulate further discussion between them.

Excluding some potential participants – The penetration of social media platforms across all age groups of the Australian population over the last ten years has been truly remarkable. There do remain, however, some significant differences on the extent of usage depending on age, geographic location and socio-economic status. Consequently, open recruitment via social media may skew a participant pool towards area where social media use is more prevalent and may inadvertently exclude some groups of people with perspectives, views or voices that might undermine the value of a project’s finding.

Platform differences and exclusion – Not every social media platforms had the same user demographics; someone who uses social media 15 times per day may only be frequenting one platform. There is no single platform that is used by most social media users. Indeed, even platforms such as Facebook seem to be used more by a particular age-range of people within the Global North. Other countries have their own platforms that are heavily used within the region (e.g. China – WeChat (微信; Wēixìn) and Russia – VK social media (Vkontakte) and Odnoklassniki), but hardly ever by people outside that region.

Privacy rules and concerns – Privacy concerns are amongst the more significant reasons why some people do not currently use social media (Sensis, 2017). Indeed, many users do not understand the privacy rules of their preferred platform(s) and remain concerned about privacy. One large survey conducted by Evans et al. (2015) suggested that concern was greater among younger and more frequent users.

Comments from participants and others – Enabling participants to comment on the recruitment social media pages for a project might be an effective way to engage with potential participants. However, there are important reasons for caution about allowing participants to comment on such pages as they might expose themselves to risk. Individuals might divulge whether they are participants or were excluded by the screening tool. In addition, they might distort the data collected from others by prompting particular responses to their own comments.

Pseudonyms and de-identification –The presumptive remedy to many social media challenges is to delete, modify or otherwise obfuscate personal identifiers such as user names. However, some platform rules often specifically preclude such an approach (e.g. Twitter treats any such de-identification as a copyright concern). Furthermore, modifications of comments or descriptions raises at least the possibility the researcher fabricated or falsified data (much as occurred in Alice Goffman’s offline study, see Neyfakh, 2015).

Recruitment materials – Many national human research ethics arrangements, such as Australia’s National Statement on Ethical Conduct in Human Research specify that review bodies must consider and first approve recruitment materials, including the text of posts to go on a social media page. In most cases, this role will be delegated to the Chair (for executive review) or the Ethics Officer (for administrative review). The rigour and substance of this review should be proportionate to the risks and ethical sensitivities of a project. The need and purpose of this review reflects the potential for risks, privacy and other human research ethics matters that can be associated with a project’s recruitment strategy.

The application for research ethics review should cover the above matters and explain why the applicant believes the proposed approach is ethical, appropriate, respectful and justified. Such matters may also need to be discussed in the consent (if not the recruitment) materials. Similarly, research ethics reviewers should expect such a justification to be provided, be open to and accepting of innovation, offer praise where due, and share their thinking where uncomfortable with a proposed approach.

Like most topics in human research ethics, there is no single ‘correct’ approach with regard to recruitment and social media. Ethical research may be best pursued through reflection and collegial discussion.

References

Evans H, Ginnis S and Bartlett J (2015) #SocialEthics: A guide to embedding ethics in social media research.

Gelinas L. et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations. The American Journal of Bioethics, Vol. 17, No. 3. DOI: 10.1080/15265161.2016.1276644

Neyfakh, L. (2015) The Ethics of Ethnography. Slate Magazine. Retrieved 8 November 2017, from http://www.slate.com/articles/news_and_politics/crime/2015/06/alice_goffman…

NHMRC (2007) National Statement on ethical conduct in human research. http://www.nhmrc.gov.au/guidelines-publications/e72.

Sensis (2017) Social Media Report 2017. Retrieved from: https://www.sensis.com.au/asset/PDFdirectory/Sensis_Social_Media_Report_2017-Chapter-1.pdf (accessed 7 November 2017)

Other reading

Chamber C (2014, 1 July) Facebook fiasco: was Cornell’s study of ‘emotional contagion’ an ethics breach? The Guardian. Retrieved from http://www.theguardian.com/science/head-quarters/2014/jul/01/facebook-cornell-study-emotional-contagion-ethics-breach (accessed 8 November 2015)

Leetaru K (2016, 17 June) Are Research Ethics Obsolete in the Era of Big Data? Forbes/Tech
http://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/#1a083ad31cb9

Contributors
Dr Gary Allen | Senior Consultant AHRECS | Gary’s AHRECS biogary.allen@ahrecs.com

Prof. Mark Israel | Senior Consultant AHRECS | Mark’s AHRECS biomark.israel@ahrecs.com

This post may be cited as:
Allen G. and Israel M. (2017, 20 November 2017) Ethical use of social media as a recruitment tool Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-use-social-media-recruitment-tool

Professional Development across the Term of an HREC Committee Member0

 

AHRECS has considerable experience working with universities, hospitals, research institutions, government and non-government organisations to care for and build the capacity of its HREC Committee members across the entire term of their appointment. We start with the needs of our clients and offer support from recruitment all the way through to running an exit interview.

Many HRECs have quite simple manual-based inductions; we help HRECs to create something more welcoming and interactive that takes members from first contact to the point where they can contribute effectively to a committee. There is a significant difference between delivering a single ‘training session’ and creating a suite of professional development activities over two to three years, that covers committee members’ terms, and that might include dedicated annual PD and Strategy sessions and incorporate ongoing PD into each HREC meeting.

We can:

  • help recruit expert external members to meet the needs of specific HRECs
  • create interactive and multi-media induction and orientation materials
  • introduce members to the broader literature on research ethics
  • create material and run professional development sessions tailored to the specialist roles of particular HRECs
  • evaluate the performance of the HREC and provide feedback to the HREC and its host institution
  • offer exit interviews to HREC members stepping down from their role, and then….
  • help recruit replacement members to HRECs

We have provided elements of such services in Australia, Canada, Mauritius, New Zealand, Taiwan, United Kingdom, United States and Vietnam for new and established, small and large institutions and consortia of research organisations.

Contributor
Prof. Mark Israel, AHRECS senior consultant
AHRECS profile page
mark.israel@ahrecs.com

This post may be cited as:
Israel M. (2017, 22 June) Professional Development across the Term of an HREC Committee Member. Research Ethics Monthly. Retrieved from: https://ahrecs.com/services/professional-development-across-term-hrec-committee-member

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

‘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://ahrecs.com/human-research-ethics/except-required-law-australian-researchers-legal-rights-obligations-regarding-participant-confidentiality

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