Many national frameworks for human research ethics, such as the National Statement (2007 updated 2018) in Australia have respect as a core principle. An essential component of respect is obtaining the prior consent of potential participants.
The role of consent in ethical research can be traced back through the Belmont Report, through the Declaration of Helsinki, back to the Nuremberg Code and earlier to philosophical, bioethics and clinical texts.
Recent egregious ethical breaches such as the Cambridge Analytica, OKCupid and Emotional Contagion cases highlight that consent problems in research are not just an issue for biomedical research and not just a 20th Century concern.
Where national and/or institutional policies discuss consent and questionnaire-based research, they will generally indicate that completion and return of a completed consent form is a valid expression of consent.
Which is indeed reasonable, especially when it is important to conceal from the researcher who has participated in their research (e.g. where an academic is surveying their own students).
Most frameworks and guidance documents for the ethical conduct of human research will indicate participants should be able to freely withdraw from research without comment of penalty.
Indeed, this is again quite a reasonable position, given that genuine respect for our participants should include acknowledging that they must ordinarily be able to withdraw their consent without comment or penalty.
Solid ground thus far? Good because now we’re approaching the conundrum that prompted us writing this post dear readers. However, for on-line questionnaires, does this mean stopping the completion of a survey whenever they want and not clicking the “submit” button? Will this mean that the data already entered is not collected? What if a participant changes her mind after submitting the data and wants to then withdraw her answers? If that survey is anonymous, consent and the submitted data cannot be withdrawn after submission, because the researchers won’t be able to tell which data was from which individual.
The advent of online questionnaires enabled the resolution of some problems that were largely only an online anyway and presented another practical ethics challenge.
A1 Using cookies to reduce the likelihood that an individual completes a survey more than once.
A2 Enabling an individual to save their progress through the survey and complete it over more than one session.
For A1 researchers should ensure the cookie does not enable them to identify respondents and ensure it will not compile any previous or future web activity. This must be explained in the consent material and assurances provided with regard to these two matters.
For A2 the consent material should explain how password information is saved and the degree to which it can be used to identify respondents.
However, as our scenario indicates, the interesting question comes up if a respondent doesn’t finish the survey.
What happens to the information already entered into the incomplete survey?
What are the wishes of the respondents as to what should happen with these data?
The answers to these questions also depend on why the survey wasn’t completed.
Was it a combination of the participant forgetting, not having time, losing interest or struggling to log in?
Alternatively, was there a reason the individual no longer wished to participate?
Regardless of the reason, what does the individual want to happen with the use of their data?
Simple answers here are not necessarily helpful. Assuming they forgot, etc may not be accurate and the use of their answers may be absolutely contrary to their wishes. By the same token, losing potentially useful data merely because participants forgot might be a significant loss – especially if the number of participants is already low.
The relevant HREC could be asked to approve a waiver of the consent requirement, so as to enable the use of the partially completed surveys (as per NS Chapter 2.3) if they were accessible and this would need to be made clear in the survey instructions.
While the opt-out approach (also discussed in NS 2.3) might seem a promising strategy, the fact the researchers cannot correspond a set of answers with an individual means that an individual’s decision to opt-out could not be honoured.
Depending on why the individual didn’t complete the survey, the waiver of the consent requirement approach is not especially ideal. It involves time and other resources that might be in short supply.
Proposals about the use of partially completed surveys should be discussed in the research ethics review application, the recruitment materials and consent materials.
This raises a related point: the reasons someone withdraws from a project might be of interest/importance to the researcher, their research centre, the research ethics review body or other researchers.
We propose the following strategy for a survey in which participants can be linked to their answers:
The consent material should discuss what will be done with the answers if the survey is only partially completed;
The revocation of consent process and form should be explained; and
The resource material for researchers and research ethics reviewers should provide a matrix that explains the treatment of survey responses.
. You will find suggested wording for the consent material and revocation form in the subscribers’ area for institutions and individuals. .
This mechanism uses an optional revocation of consent form. It is essential that participants are told this form is optional, they can stop participating at any time, without explanation, but then using the form would be very informative to researchers. In the subscribers’ area is both a suggestion for the questions in the revocation form and the associated text for the consent material. .
We suggest the revocation form would provide some further clarity about the matters above. In the case of situations where a revocation form is not provided it is perhaps prudent to conclude those individuals don’t want their partially completed survey to be used. .
The same approach could be used for other kinds of research designs where data is collected at more than one sitting/point/session. . .
For surveys in which participants cannot be linked to their answers, we propose the following strategy: .
The consent material should discuss what will be done with the answers if the survey is only partially completed;
The consent material could include an optional incomplete submission advice that provides researchers with information about why the survey was not completed, e.g. chosen from a dot-point list; and
The consent material should also clearly state that once submitted, data in completed surveys cannot be withdrawn.
For many of us, preparing the Participant Information and Consent Form (PICF) for a research project is an irksome, time-consuming and unexciting “hoop-jumping” task. Albeit, essential.
Indeed, the National Statement shows how essential the PICF task is. In particular, the Statement’s guiding principle for researchers is that:
“… a person’s decision to participate in research is to be voluntary, and based on sufficient information and adequate understanding of both the proposed research and the implications of participation in it.” [1]
For the purposes of this blogpost, the emphasis is on the ”understanding”.
The PICF provides the key avenue through which research participants are educated and informed ― though oral communications often supplement the document in important ways.
But to educate and inform the research participant, we need to do more than simply give them a lengthy document they find confusing, complex and perhaps impenetrable.
Rather, authors (or teams) who create a PICF need to do more ― they need to:
reflect on, and identify, factors that impede clear and concise communication; and
create a document that services the information needs (and sometimes the limitations) of the target readers — those readers include the potential research participant as well as the members of the ethics committee who scrutinise (and sometimes criticise) the document to determine its appropriateness for those participants.
Roadblocks to comprehension and ease of use
The roadblocks to generating a clear, concise and easy to easy to read PICF are often:
the many topics that need to be covered ― as required by the National Statement
the complexities of the project or of the underlying medical, technical, scientific etc issues;
the constraints of a – sometimes helpful — template. But even within a template, the writer has an opportunity – and an obligation — to ensure that the text inserted into the template is well-expressed and well-structured — and (most importantly) reader-focused; and
the language constraints imposed ― sometimes not so helpfully — by pharmaceutical companies or their legal advisors. Sometimes, that imposed language seems less concerned to inform the reader and more concerned to protect the sponsoring organisation.
For all of these reasons, PICFs can be long, complex, hard to read, and therefore unread.
These challenges are compounded by pressures ― actual and perceived ― that operate on PICF authors. For instance, many scientific writers:
under time and performance pressure, seek to cut and paste existing materials in the hope that a cobbled together PICF will do the job;
adopt an inflated and excessively formal writing style ― they do this because they wrongly equate formality with professionalism;
are concerned that an easier-to-read document might oversimplify (“dumb down”) important information, and generate inaccuracies; and
write in a way that works for them and their technical peers, but that ignores or forgets the key reading audience’s needs, priorities and (sometimes exceptionally importantly) limitations.
Reflecting on the key reading audience/audiences, and using the principles of plain language communication to speak to those audiences
The key questions every writer must ask and answer are:
Who am I writing to?
Why am I writing to them? What do I want them to know, do, understand et cetera?
A PICF usually has two key reading audiences:
members of an ethics committee; and
more importantly, potential research participants.
Research in Australia consistently shows adult literacy rates to be low — and even lower when it comes to the issues of health and scientific literacy. These challenges to participant comprehension are even greater for a participant whose thought processes are influenced by fear, false beliefs, denial, anxiety and distress. [2]
Yet unlike the research participant, the writer of the PICF is hyper-literate. And massively informed about the topic ― indeed, they are likely to be as informed about the topic as anyone could be, given the state of the research.
Hyper-literate and highly informed authors struggle to “unburden” themselves of their assumptions around the audience-appropriateness and reader-friendliness of their writing. Most scientists think they are good, or very good, writers. So do most lawyers. Hah!
But unburden themselves PICF authors must. At all times, they need to focus on the information needs — and limitations — of the target reader, so that the participant can, with relative ease, understand:
How and why this research is relevant to them or their condition;
What problem the research is addressing;
What solution the researcher is seeking;
What it is they are testing; and
How the findings might help the potential participant, or others, with the relevant condition. That is, how the research might improve future care – its cost, complexity, frequency, efficiency et cetera.
Working towards a plain English PICF
For these reasons, we need to reflect on the principles of plain English communication to help readers work their way through the PICF. By doing so, we help satisfy the demands of the National Statement.
When talking about “plain English”, we rely on the internationally accepted definition developed and adopted by the International Plain Language Federation. [3]
“A communication is in plain language if its wording, structure, and design are so clear that the intended readers can easily find what they need, understand what they find, and use that information.”
A starting point: George Orwell
A good starting point on how to achieve a clear and reader-focused document is a famous essay by the novelist George Orwell entitled “Politics and the English Language”. Although he was writing to a general audience, many of Orwell’s observations are directly relevant to the writing of a PICF.
Among his key points:
Never use a metaphor, simile, or other figure of speech which you are used to seeing in print. These days, we say avoid clichés.
Never use a long word where a short one will do. Bernard Dixon, formerly the editor of the New Scientist, tells the story of a manuscript he received containing the following opening sentence:
”The mode of action of anti-lymphocytic serum has not yet been determined by research workers in this country or abroad.”
The author was outraged when he received the following revision from Mr Dickson:
“We don’t know how anti-lymphocytic serum works.”
Dixon says it took him 20 minutes of close textual analysis until he finally persuaded the author that the meaning of the sentence had not been altered despite the fact that the shorter version was now more direct, more readable and one third its original length
If it is possible to cut a word out, always cut it out. A first draft is almost never the most concise draft.
Never use the passive where you can use the active. Occasionally, the passive voice has a legitimate — and sometimes an important — role in scientific writing. But it also can be hard work for the target reader: wordy, pompous, unclear, confusing and sometimes deceptive. It is often overused (or to use the active voice, “we often overuse it”; see for instance, Passive Voice in Scientific Writing https://cgi.duke.edu/web/sciwriting/index.php?action=passive_voice). For these reasons, many scientific journals actively encourage authors to use the active voice when submitting articles
Never use a foreign phrase, a scientific word, or a jargon word if you can think of an everyday English equivalent. In a PICF, which often has a necessary and unavoidable degree of scientific/medical technicality, this can be hard to achieve. But sometimes, it might be helpful to supplement the necessarily technical text with additional text that walks the reader through the concept in ways that will work for them. And remember: many research participants might struggle with language that the researcher will take for granted — for example words like “positive”, “negative”, “lateral”, “terminal”, “ante”, “hyper”, “hypo”, “significant”, “natural”, “theory”, “monitor” etc.
Break any of these rules sooner than say anything outright barbarous. As Orwell acknowledges in this, his final, point, the language (and for that matter, structure and design) is there to be used, and the options for generating clear and reader focused text are limitless.
But whatever the approach, and whatever the setting, we must all reflect on the importance of generating text for our target readers that is not only accurate and comprehensive, but is also clear, concise and effective from the reader’s perspective. While these writing principles are clearly important in the writing of a PICF, they are also important in the wide range of settings where researchers seek to inform, educate, engage and persuade their readers — including the general public, potential funding sources, policymakers and politicians.
Some Further Reading
Australia has for many decades played a leading role in the so-called plain language “movement”, particularly in connection with a number of important law reform initiatives. Currently, Australian plain language practitioner and advocate Christopher Balmford chairs the Standards Committee of the International Plain Language Federation. In 2019, the Federation proposed to Standards Australia that it in turn propose a plain language standard to ISO. Both proposals were approved. ISO has established a committee, chaired by Balmford, to develop an optional, multi-language, plain language standard. The first draft is due to be reviewed at a meeting in Bangor, Wales in June 2020.
Although Australia has done a lot of excellent work, some of the key resources around scientific writing come from other countries.
Here is a list of some of the key resources that might help with future PICF writing:
Writing about biomedical and health research in plain English; A guide for authors
Bob Milstein is a practising health lawyer and a member of an ethics committee.
He is also lead trainer in Words and Beyond, one of Australia’s leading providers of plain-language training, document rewriting, and cultural change (www.wordsandbeyond.com). He can be contacted on milstein@bigpond.net.au
Breakthroughs in medicine often highlight the existing limitations of the frameworks established to manage the ethical responsibilities arising in healthcare. The contraceptive pill, organ transplantation, assisted reproductive technology, gene therapy and more recently gene editing are notable examples that have stimulated major debates and, in several instances, prompted changes to not only ethical guidelines but also legislation. However, there are also more subtle ethical issues that arise from doing established activities in a different context or scale. Think of so-called Big Data applied to health care or to uses of machine-based learning which promise to revolutionize practice but are really just larger scale applications of business as usual using more sophisticated technology than before. One result of these two developments is the amassing of personal data online which coupled with improvements in reidentification techniques present challenges to how we manage the privacy of individuals. These have prompted amendments in regulation that facilitate the use of personal data whilst also strengthening protections for individuals (link to GDPR).
Less well known, are changes in the way we evaluate existing healthcare practices to ensure they are truly safe, effective and economical. One such example is the increasing focus on Comparative Effectiveness Research (CER). These studies compare two or more existing practices that are in widespread use and have been found safe and efficacious. CER is an extension of audit/QI practices in that it uses clinical trial methodology and the power of randomisation to remove the biases inherent in the observed outcomes in a population of non-randomised patients receiving a particular health service. These studies generally include large numbers of patients (sometimes several thousand) so that they can detect differences between the interventions that, while relatively small, can nonetheless be clinically meaningful at a population level.
There is an over-riding ethical need to do this work constantly within what can be termed a ‘learning healthcare system’ 1. Conceptually this means that every single instance that a person interacts with the health system should be captured in a manner in which it can be evaluated to make sure that optimal care is provided. Both patients and health system leaders expect this to be happening and yet in truth, the lack of standardisation in data capture, storage and interoperability means that few do this efficiently and effectively as part of routine healthcare activity. Moreover, existing research ethics frameworks impede the integration of healthcare and research by failing to recognise the differences between studies that involve standard care treatments from studies testing novel interventions with unknown safety profiles. One example is the requirement to apply to comparative effectiveness studies informed consent processes that differ so greatly from routine consent to treatment they are impossible to integrate into routine clinical workflows.
In a recent paper, (Symons et al 2) we have considered whether approaches that utilise modified consent pathways for CER are permissible from an ethical and regulatory perspective. In an accompanying editorial 3Dr Evan Kharasch challenges the readers of the journal to consider how the existing ethical and legal frameworks can be complied with for trials where the risk of harm is small. There is a perception that as soon as a study employs randomisation it becomes more than low risk when this may not, in fact, be true. It is also important to consider the ethical issues that arise when this type of ‘public good’ trial is simply not done because using consent processes suitable for interventional trials of unapproved therapeutics makes them impracticable. If indeed a particular treatment is less effective or causes more harm and we continue to use it because we consider that currently required ethics processes render them impracticable, then those processes have led to potentially unethical outcomes.
To achieve the best healthcare outcomes, greater sophistication of thought is needed at the ethics committee level. It also seems obvious that greater engagement with consumers is a necessary and relevant pathway to designing and conducting trials that deliver on expectations. The Australian Clinical Trials Alliance (ACTA) together with the Trials Clinical Trials: Impact & Quality (CT:IQ) have developed a consumer involvement and engagement toolkit that serves this purpose [1]. By working more closely together and encouraging more flexible and contemporary approaches to research ethics compliance, we can achieve the ideal of encouraging and supporting clinicians and health services to undertake continuous improvements to health services using the best methodologies to achieve this for the benefit of the community they serve.
References
1 Faden, R. R. et al. An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. Hastings Cent RepSpec No, S16-27, doi:10.1002/hast.134 (2013).
2 Symons, T. J., Zeps, N., Myles, P. S., Morris, J. M. & Sessler, D. I. International Policy Frameworks for Consent in Minimal-risk Pragmatic Trials. Anesthesiology132, 44-54, doi:10.1097/ALN.0000000000003020 (2020).
3 Kharasch, E. D. Innovation in Clinical Research Regulation. Anesthesiology132, 1-4, doi:10.1097/ALN.0000000000003026 (2020).
In New Zealand, we have two separate drivers for change in research ethics for working with Māori. The first are the institutional responses to the legal requirements of government institutions to accord justice to the principles of the Treaty of Waitangi (see Te Puni Kokiri, 2001). The second arise where Māori scholars have pulled on practices and ideas within their iwi and hapū to develop a Māori centred research philosophy, that in turn has created a distinctively Māori research ethics.
I made this argument at a recent conference, in a paper to honour the late Barry Smith. Barry, in reviewing ethics applications and creating ethics policy could articulate how to negotiate both with his usual insight, grace and wit and aloha. Without him to drive developments we must think carefully about how to follow his example of synthesising the best of ethical approaches to advance Māori wellbeing and rangatiratanga (roughly translated as indigenous self-determination, see Durie, 1988).
So what is the history of research ethics approaches to research with Māori? First, the radical 1984 Labour government’s privatisation agenda enshrined ‘the principles of the Treaty of Wāitangi’ that put in critical pieces of legislation to ensure continued Māori support. The first, and most important of these Treaty clauses was in section 9 of the 1986 State-Owned Enterprise Act.
s9 nothing in the Act permitted the Crown to act in a manner that was inconsistent with the principles of the Treaty of Wāitangi.
When the government inevitably breached this section, a judicial review case allowed the Court of Appeal (at the time New Zealand’s highest court) to set out its view of the relationship between the Crown and Māori. (New Zealand Māori Council v Attorney-General 1 NZLR 641, (1987) 6 NZAR 353). Later cases set out that consultation had to be conducted with an open mind, and Māori were to be given complete information about the subject. Wellington International Airport Ltd v Air NZ [1991] 1 NZLR 671 (Court of Appeal)
The case indicated that the courts expected any government institution (with a Treaty clause in its enabling legislation) to ‘consult’ – to the satisfaction of a court – with Māori individuals and groups who may be affected by its policies or practices. So all government agencies have since been on notice that they must consult with Māori fully on decisions that might affect Māori, and not to do so could lead to a judicial review of their decision-making by a court. Moreover, any Māori individual could also ask the Wāitangi Tribunal (an ongoing political commission of inquiry into Treaty breaches) to review a government action or inaction which breached the principles of the Treaty of Wāitangi.
Due to these incentives, government agencies got into the practice of consulting with Māori organisations on anything that might be of interest or affect Māori. So both the health sector ethics committees and the University ethics committees developed policies that asked applicants to demonstrate they had ‘consulted’ with Māori.
At the same time, a more humane approach to Māori research ethics was also being developed – it arose from Māori scholars grappling with how to inject Te Ao Māori (literally, the Māori world) into the systems around them. Models included, Te Whare Tapa Whā (Durie, 1984), The Meihana model (Pitama, 2007) and the Hui model (Lacey, 2011), to name but a few. In all of these models, there is a wealth of indigenous knowledge that is also discussed beautifully in Te Ara Tika (Smith, 2010), a guide to reviewing research involving Māori, that arose from Barry’s concerns around gaps in knowledge about Māori and research ethics.
So there is an objective legal risk driving consultation with Māori over research on the one hand, and on the other, a philosophically normative Māori centred ethics, drawn from a Māori-centric approach. They can sit awkwardly together for researchers and reviewers. For instance, the two approaches are often combined as though they are one – so that researchers are left thinking they are legally required to adopt Māori normative ethics prescribed in the scholarly models of Māori research, and so do not listen to the tikanga (protocols) of the local community with whom they are researching. Alternatively, researchers may comply with the spirit of the law and do consultation – but as the government has proved time and time again; meeting the judicial test for consultation can still leave many feeling deeply unheard.
This leaves non-Māori, and I have seen this as a Māori research consultant for my University, in what Tolich called, ‘Pakeha [non-Māori] Paralysis’ – that is, paralysed by Māori concerns and thus avoiding doing research with Māori. Indeed I have counselled academics to avoid Māori centred research because they do not have skills to do it.
The deeper problem is that non-Māori researchers don’t have the resources to research appropriately with Māori. And Māori don’t, and should not have to have the capacity to serve the needs of non-Māori researchers.
I have pointed out the incentives for ethics review for Māori because I believe they can show us how to solve the problem. The law states that ethics reviewers must take seriously the voices of Māori in the research, but taking that seriously is not to follow the dictates of legal cases about consultation – those cases were decided about events unrelated to research or ethics. Nor must ethics committees think particular Māori philosophies of research must apply, since there are many more communities that have their own philosophies, and it is those local philosophies that should be privileged.
If we look to the underlying principles of both Māori research principles and legal cases, they combine to suggest we must take seriously the idea that research engages with Māori when it takes seriously the voices of the communities and participants involved in, or around the research. That is, the researchers should be seeking and assisting Māori voices to be heard in the research, if those Māori communities and individuals wish to be heard. To meet the legal needs, and to ensure Māori are given rangatiratanga, I suggest the appropriate question for a researcher to ask themselves (or be asked by the review committee) is ‘how are you making it possible for the Māori individuals and communities to communicate and participate with you in the project should they wish?
References
Durie, M. (1998). Te Mana Te Kawanatanga: The politics of Maori self-determination. Auckland; New York: Oxford University Press.
Durie, M. (2001). Mauri Ora: The Dynamics of Māori Health.
Pitama, S., Robertson, P., Cram, F., Gillies, M., Huria, T., & dallas-katoa, W. (2007). Meihana Model: A Clinical Assessment Framework. New Zealand Journal of Psychology, 36.
Lacey, C., Huria, T. B.,Lutz, & Gilles, M. P., Suzanne. (2011). The Hui Process: a framework to enhance the doctor–patient relationship with Māori. New Zealand Medical Journal, 124(1347).
Smith, B., Reynolds, P., Russell, K.,& et.al. (2010). TE ARA TIKA Guidelines for Māori Research Ethics : A framework for researchers and ethics committee members. Health Research Council of New Zealand.
Tolich, M. (2002). Pakeha” paralysis”: Cultural safety for those researching the general population of Aotearoa. Social Policy Journal of New Zealand, 164-178.
For a good guide to the history and impact of Treaty clauses in legislation see Palmer, M. (2008). The Treaty of Waitangi in New Zealand’s law and constitution. Wellington [N.Z.]: Victoria University Press.
The senior consultants started AHRECS in 2007. We were looking for a way of responding to requests for advice on research ethics and integrity from the government, health and education sectors read more...
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Random image from the AHRECS library. These were all purchased from iStockPhoto. These are images we use in our workshops and Dr Allen used in the GUREM. Less
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