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The perils of anonymous online research and risk: Two hands tied behind your back1

 

Online research offers many advantages. If well designed, a web survey/task or other data collection tool can collect robust data from large populations, incorporating validations and other tools (including anonymous cookies to minimise the risk a participant submits more than one set of responses). These techniques can ensure any data collected is more likely to be useful and reliable. Collecting data online also means that participant responses to survey questions/performance in tests can be directly added to the data set for analysis (rather than transposed later).

Another apparent ethical advantage of online research is that it can be collected anonymously so that not even the researchers know who disclosed what. This anonymity can seem especially attractive when individuals are to be asked embarrassing questions, asked about sensitive matters and/or where there are risks associated with the collected data. It might then seem easy to respond to the risk questions in an application for ethical review:

“There are no risks, no matter requiring attention because the researchers won’t have data that can be traced to an individual.” Right?

Ordinarily, if a participant used an interview to disclose significant mental anguish an experienced interviewer could suspend the data collection to counsel a participant and to urge them to seek help from someone with appropriate training. If an interviewer was sufficiently worried that there was reason to believe there was imminent and serious risk to the interviewee or others they could decide to alert the appropriate authorities.

Neither options are available to a researcher conducting anonymous online research. This enables a researcher to evade any mandatory reporting requirements to which she or he might be ordinarily subject. But, is this the right thing to do?

The same argument might be true for offline research (such as an anonymous paper & pencil survey). However the very wide scope of online data collection and the degree to which people appear very willing to disclose things online, does appear to increase the likelihood such disclosures will be made in online data collection.

I have seen this happen, where a participant used an online anonymous survey seeking views on an apparently innocuous psychological subject to disclose an intention to self-harm. Not only were the researchers unable to take any action, their powerlessness to act caused the research team (especially the junior members) a great deal of distress.

The implications of this case might be that there are some subjects and potential participant pools where data should never be collected anonymously. This might be the case even when the informed consent material urge participants to seek expert support if they are distressed. In fact in the case I am referring to above, such a statement was in fact present in the informed consent materials. Consequently, perhaps we should consider whether there are circumstances where data should initially be collected in an identified form, only to be de-identified once the researchers have determined there are no compelling reasons obligating them to act.

Of course such a mechanism raises its own ethical, risk, consent and legal considerations.

Gary Allen,
Office for Research,
Griffith University
Gary’s AHRECS profile
Gary’s Griffith University profile

This blog may be cited as:
Allen, G (2015, 7 August) The perils of anonymous online research and risk: Two hands tied behind you back. AHRECS Blog. Retrieved from https://ahrecs.com/uncategorized/the-perils-of-anonymous-online-research-and-risk-two-hands-tied-behind-you-back

An Open Invitation to Research an Ethics Committee1

 

Jay Marlowe and Martin Tolich have had an article published (in press) in Research Ethics examining the first year of the not for profit New Zealand Ethics Committee (http://www.nzethics.com/.) They claim NZEC is unique: it reviews applications focusing solely on an application’s research ethics and not as traditionally practiced on research governance. Whilst university and health based researchers in New Zealand are compelled to submit their research for review by ethics committees, local/central government, NGOs and community based researchers are exempt from this process; they usually do not have access to this level of support or review. Though many social scientists have found research governance a frustration in ethics reviews, this article asks if an ethics review committee can function outside an institutional frame focusing solely on research ethics. Does NZEC represent a novel paradigm moving ethics review beyond a risk management exercise of gate keeping to that of bridge building between parties? Their article reports on NZEC’s first year of operation (2013) by interviewing (via a third party) the 14 applicants who voluntarily sought ethics review. They sought to ascertain why these applicants gained ethical review when not mandated to do so and if they experienced this review process as a new paradigm. In 2014 NZEC received 22 applications and as of April 30, 2015 they have received 19 expecting to review 50 applications in 2015. Members of the NZEC invite researchers to research their ethics review processes.

Marlowe, J. & Tolich, M. (in press). Shifting from Research Governance to Research Ethics: A Novel Paradigm for Ethical Review in Community Based Research, Research Ethics

Associate Professor Martin Tolich, Sociology, University of Otago has three recent books. These are

Joan Sieber and Martin Tolich (2013). Planning Ethically Responsible Research Sage, Thousand Oaks.

Martin Tolich and Barry Smith (2015). The Politicisation of Ethics review in New Zealand, Dunmore Press, Auckland

Martin Tolich editor (in press 2015). Qualitative Ethics in Practice, Left Coast Press, Walnut Creek, CA.

This blog may be cited as:
Tolich, M (2015, 11 July) An Open Invitation to Research an Ethics Committee. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/an-open-invitation-to-research-an-ethics-committee

Ethics review and self-censorship (Lisa Wynn)5

Posted by Admin in Human Research Ethics on June 27, 2015 / Keywords: , , ,
 

When it comes to human research and ethics review, self-censorship comes in two forms.

The first kind comes after ethics review. The ethics committee gives the applicant feedback phrased as questions, requests for further information, and suggestions. But the suggestions are often taken as having the weight of law by inexperienced researchers, especially students. They don’t realise that they can argue with their ethics committee and show why its suggestions won’t produce the most ethical outcomes.

I once had a student who got a letter from our ethics committee and thought it was a complete rejection of her project. Much like a revise-and-resubmit letter from a journal, letters from ethics committees often start with wording along the lines of, “We cannot approve your project in its current form.” My student ignored the last four words in that phrase, panicked, and thought she was going to have to abandon her project altogether — when in fact all we needed to do was change a couple things on the information and consent form.

‘Talking back’ to an ethics committee can be very effective. Arguing with them (politely, of course) shows you’ve considered the ethical issues in depth — maybe more depth than they have. In my five-plus years of serving on an ethics committee, I’ve found it exceptionally rare for a research project to not get approved after one or two rounds of back-and-forth between the researcher and the committee, even when the researcher doesn’t take on any of the committee’s suggestions.

The second kind of self-censorship, however, it much more troubling and hard to document. This is when researchers decide to change their research — or to give up on research altogether — because they think they won’t get through ethics review, or because they consider it too much bureaucracy to cope with.

Here’s an example. I recently travelled across Australia asking teachers how they were dealing with the requirement of ethics review for student research. Many of the people I talked to said that they just didn’t. One anthropology honours coordinator at a G-8 institution explained www.teaching-research-ethics.com/#!case-study-1/cluk

“It was decided that it was just too hard.  So at that point the research project as part of honours was dropped and they were told that they must not do anything in their honours year including for their dissertation that would attract the need for an ethics approval.  Students are pointed away from doing anything that may attract the need for ethics approval.  We just say don’t do it.”

This kind of self-censorship is far more difficult to counteract. We have no measurements of how many people decided to not do a research project, or to modify their research project, because they didn’t want to have a battle with an ethics committee.

How many research projects have been watered down, made less risky but also less innovative, because researchers felt like they couldn’t stand up to their ethics committees? How many have been abandoned altogether?

L.L. Wynn,
Department of Anthropology,
Macquarie University
Lisa’s Macquarie staff profile
Teaching Research Ethics Network

This blog may be cited as:
Wynn, L (2015, 27 June) Ethics review and self-censorship. AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/ethics-review-and-self-censorship-lisa-wynn

Is the pre-recruitment of research participants potentially an ethical issue in Australia? (David Hunter)1

Posted by Admin in Human Research Ethics on June 11, 2015 / Keywords: , , , ,
 

I’ve recently published a paper focused on the UK looking at some ethical issues faced by a practice that has developed for the recruitment of research participants there, called pre-recruitment. http://jme.bmj.com/content/early/2015/02/19/medethics-2014-102639.abstract. Given the difficulties recruiting research participants, companies have formed who source research participants for researchers, particularly for pharmaceutical research. They do this primarily by recruiting potential participants onto lists and then selling access to these lists to researchers.

This is hardly a new practice, informally researchers often keep lists and contact details for previous participants so they can recruit them onto future studies which is a form of pre-recruitment in itself. However having become a commercial business worrying trends have emerged in the UK regarding the information provided to the pre-recruited, where they may be promised that they will earn thousands of pounds, help cure cancer and be heroes if they just agree to volunteer.

What is problematic about this is that no research ethics committee in the UK and I suspect none here either would approve a project which made such statements in its recruitment literature. However because this is pre-recruitment it is entirely unregulated. And worse still the research ethics committee reviewing the actual study that draws on this pool of pre-recruited participants will probably not know they have been pre-recruited, nor what information they were given prior to their recruitment to a specific study. This is problematic both because it makes a mockery of the careful provisions we have established regarding informed consent to ensure it is valid (avoiding explicit incentives, emotive language and over promising results) but also because it presents the participants with conflicting information, which turns the consent process into a game they play to get to the results (a fortune, cure for cancer etc) rather than a careful reflection on whether they want to participate.

Like in the UK, presently in Australia the pre-recruitment of research participants is entirely unregulated – specifically the National Statement wouldn’t apply to pre-recruitment since it is not directly the recruitment of research participants though we might think best practice in pre-recruitment would follow the norms established by the National Statement and enforced by Human Research Ethics Committees (HRECs) for the direct recruitment of research participants in Australia.

So how should HRECs respond to pre-recruitment? Pre-recruitment is difficult to regulate both because it is prevalent and because unlike research itself it does not have a public output at the end of it. I’d suggest that the best way forward is for a section on pre-recruitment be added to the National Ethics Form. This should ask if any research participants have been pre-recruited, and if they have copies of the recruitment literature and materials should be provided to the HREC reviewing the research. If the HREC considers that material to be misleading or inadequate it can then turn down the study, or at least require a different recruitment method. This is likely to quickly change the practices of pre-recruitment companies since if researchers can’t get ethical approval if they use pre-recruiters their business model will swiftly fail.

Dr David Hunter
Associate Professor of Medical Ethics
Southgate Institute,
School of Medicine,
Flinders University
David.hunter@flinders.edu.au

This blog may be cited as:
Hunter, D (2015, 11 June) Is the pre-recruitment of research participants potentially an ethical issue in Australia? AHRECS Blog. Retrieved from https://ahrecs.com/human-research-ethics/is-the-pre-recruitment-of-research-participants-potentially-an-ethical-issue-in-australia-david-hunter

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