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Endometriosis, women’s health and the ‘hysteria myth’0

 

Kate Young, Research Fellow, School of Public Health and Preventive Medicine, Monash University
Profile | Kate.Young@monash.edu.au

This post originally appeared on Monash Lens

Endometriosis is finally a hot topic.

We’re hearing more and more women’s stories of having their pain dismissed by loved ones and doctors. Stories of lives being derailed by debilitating symptoms. And stories of strength and determination to make the next woman’s experience a little better.

About 1.5 per cent of the female population worldwide has endometriosis. It’s a chronic disease formed by tissue such as the lining of the uterus (the endometrium). This tissue forms lesions that stick on, and sometimes invade, organs such as the ovaries and bowel.

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Symptoms of endometriosis include painful and heavy periods, diarrhoea and painful sexual intercourse, to name a few. The most accurate form of diagnosis is through surgery. The disease can be removed by surgery and managed with hormonal therapies (such as the contraceptive pill), though about half of all women will redevelop symptoms after treatment.

As a public health researcher, I’m interested in how healthcare for endometriosis can improve women’s experiences of the disease and lives overall.

My research addresses the social, cultural and historical factors that shape what goes on between women and their doctors. Are these interactions meeting women’s diverse needs? And does their healthcare foster their full participation in society?

Room for improvement

My research with doctors suggests there’s room for improvement.

I interviewed eight gynaecologists and four GPs about their views on providing care to women with endometriosis.

The doctors expressed empathy and concern for women with endometriosis. However, they were challenged by those they didn’t know how to help. (This is a lot of patients, considering there’s no effective long-term treatment for at least half of all women.) In response to this challenge, clinicians often turned to the ‘hysteria myth’.

The hysteria myth attributes the cause of women’s illnesses – usually ones that have no clear medical explanation at the time – to their psyche (mind) and failure to uphold their ‘biologically destined’ role of mother. An example of this is Plato’s wandering womb – disease in women was attributed to their uterus wandering around their body, with the ‘cure’ being pregnancy to anchor it. This is echoed in the modern-day trend of doctors recommending pregnancy to women with endometriosis, despite no research evidence for benefit.

There’s little quality research to guide doctors in their care of women with endometriosis. They’re expected to always have an answer for the people who seek their care.

Most doctors began their interview by distinguishing between what we termed ‘good’ and ‘difficult’ patients (labelled by one gynaecologist, the “endometriotic cripple”).

‘Good’ patients were women who accepted their doctor’s interpretation of their disease and symptoms, and didn’t pose a challenge to their doctor.

‘Difficult’ patients were typically women who didn’t find relief from available treatments and who repeatedly returned for help. These women’s symptoms were attributed to their psyche. As one gynaecologist said:

“They [women] make that the focus of a lot of things that go wrong, and perhaps endometriosis has to play a larger part in their lives than it necessarily has … Depending on their … psychological system and ability, I think they make that the focus of their lives, the reason why they can’t go on and do things. They’ve got something to blame.”

Another gynaecologist, however, made a similar distinction but with no value judgement. She said:

“Some people are able to be philosophical about those kinds of things and think, ‘Oh, you know, that’s what nature’s dealt me and I’m just going to have to deal with it and get on with it.’ And for other people it’s a grief response that is much more difficult to deal with and find their way through, and the extent to which that’s influenced by things like people’s sense of self-worth that might relate to their employment or other roles in life … There’s a whole lot of things; I don’t think it’s simple.”

When asked about the potential impact of living with endometriosis on women’s mental health, one gynaecologist stated: “Do mad people get endo or does endo make you mad? It’s probably a bit of both.” Another hypothesised that one of his patient’s symptoms was a “psychosomatic expression” of “matrimonial disharmony”.

Women deserve better

As a woman and feminist, these things were hard to hear. But they weren’t surprising. These findings are consistent with the research into women’s experiences of endometriosis and with the stories shared in the press and social media. There’s no question that women deserve better than this.

But the answer doesn’t lie in condemning individual doctors.

Doctors attributing women’s symptoms to their psyche reflects society-wide beliefs about women and their bodies that have persisted for much of documented human history. (Remembering that it’s largely men who have been doing the documenting.) Beliefs that the sole purpose of women is to reproduce, that they are volatile and controlled only by their raging hormones, and that they’re not to be trusted or believed. These are beliefs that we all, including myself, participate in perpetuating to varying extents.

There’s little quality research to guide doctors in their care of women with endometriosis. They’re expected to always have an answer for the people who seek their care. Our medical system and culture make it difficult for a doctor to say, “I’m sorry, but I don’t know how to help you.” (Though the women in my research valued doctors who did do this.)

We must give clinicians the training and support they need to provide comprehensive healthcare for women with endometriosis. This care should foster women’s full social and economic participation; clinicians need the skills to recognise when their practice may be impeding it.

We must do better.

Read more: About endometriosis (The Royal Women’s Hospital)

This post may be cited as:
Young, K. (13 March 2020) Endometriosis, women’s health and the ‘hysteria myth’. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/endometriosis-womens-health-and-the-hysteria-myth

Plain English communications and the PICF – and beyond0

 

Bob Milstein
See below

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:

  1. Who am I writing to?
  2. 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:

  1. members of an ethics committee; and
  2. 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

https://www.newscientist.com/article/mg13718654-300-science-and-fiction-plain-words-please/

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

http://www.access2understanding.org/wp-content/uploads/2014/11/Access-to-Understanding-writing-guidance_v1.pdf     

  • Simply put: a Guide for Creating Easy-to-Understand Materials150 (Centers for Disease Control and Prevention, United States)

www.cdc.gov/ health communication/ToolsTemplates/Simply_ Put_082010.pdf

  • Everyday Words for Public Health Communication, May 2016 (USA)

https://www.cdc.gov/other/pdf/everydaywords-060216-final.pdf

Bob Milstein, Words and Beyond

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

Footnotes

[1] https://ahrecs.com/human-research-ethics/release-of-the-national-statement-on-ethical-conduct-in-human-research-2007-updated-2018-with-interview . See in particular Ch 2.2.1.

[2]  Australian Bureau of Statistics, Adult Literacy and Life Skills Survey 2006  https://www.abs.gov.au/AUSSTATS/abs@.nsf/Previousproducts/4228.0Main%20Features22006%20(Reissue)?opendocument&tabname=Summary&prodno=4228.0&issue=2006%20(Reissue)&num=&view=

[3] http://www.iplfederation.org/plain-language/

This post may be cited as:
Milstein, B. (6 March 2020) Plain English communications and the PICF – and beyond. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/plain-english-communications-and-the-picf-and-beyond

Lost time may never be found again but is it time to talk about the duration of ethics approvals?0

 

“To everything there is a season, and a time to every purpose” a time to report on ethical conduct, a time to renew an approval, or a time to face misconduct proceedings.

Dr Gary Allen

What is the length of ethics approvals that your HREC grants?  In this article, I will discuss this question and some of the reasons for choosing approval periods.

A related question is, under what circumstances should an ethics approval be withdrawn?  Can/should research ethics review bodies withdraw approval because of extended/repeated failure by a researcher to provide an ethical conduct report?

Australia is unlike the US where the conventional interpretation of the Common Rule is that ethics approvals are of one year.  Accordingly, US researchers must provide annual ethical conduct reports to maintain ethics approval and avoid needing to make a fresh application.

In Australia, the duration of approval is not specified by the National Statement and the only clear Australia-wide external requirement to provide reports in a certain time is paragraph 5.5.5 of the National Statement which provides that researchers should report to ethics review bodies at least annually.  As a result, approval duration is likely to be dictated by institutional policy and some have adopted maximum duration periods.  A short (e.g. 12 months) approval period and renewal requirement is one lever committees can use to compel researcher compliance to provide evidence that the needs for approval periods are being met.

There are, I suggest, four such needs that are served by a choice of duration of an ethics approval, namely:

  • Compelling a report from a researcher and allowing a review body to confirm that –
    1. a project is being conducted as per the approval, and
    2. the welfare and interests of participants are still being adequately provided for.
  • Providing an opportunity to reflect on any changes to national standards or institutional policies or pertinent cases that warrant a rethink of approvals.

Researchers can typically seek a long duration ethics approval because:

  • The design calls for repeated data collection across an extended period, such as a longitudinal ethnographic study;
  • The work is a component of a program of work focussed on a cure for a chronic condition; or
  • The work intends to compile an archive of biospecimens, data, document samples, audio-visual material or other items of historical/cultural significance.

The maximum duration of a research ethics approval would also appear to be connected to how long an HREC has operated and the amount of work the committee is undertaking. In Australia, institutional decisions on the matter can also be associated with changes in national ethics review requirements that occurred in 1999, 2007 and 2018 (and beyond).

Like other aspects of human research ethics practice in Australia, the approach to duration has reflected practice in the United States.  While Australia does not have the same kind of regulatory framework as the US where failing to maintain ethics approval can have consequences for institutions, the use of single year approvals is probably used as a way to promote adherence to the institution’s ethical conduct reporting requirement.

While understandable, such short-term approvals can punish conscientious researchers because of an institutional response to recalcitrant researchers.

However, early in a research ethics committee’s operation, it is not uncommon for it to grant approvals with durations of between one and three years.

This can reflect the committee’s confidence:

  1. in its role and decisions;
  2. and trust that researchers understand their responsibilities and will abide within the scope of the ethics approval; and
  3. that projects will progress as per applications or researchers will contact the institution’s research office if the unexpected occurs.

A low workload of a committee can serve as an incentive for short duration approvals and longer duration/longitudinal work is chunked out into two or more applications. Increasing the number of approvals may not allow the committee and research team to develop expertise before the committee commits to an extended period of research. Alternatively, a committee might be tempted to inflate its number of approvals artificially to attract either resources or credibility.

Conversely, when a research ethics committee is very busy, there may be more incentive to grant longer approvals to minimise the number of times the committee needs to review renewals of long duration projects.

Given, the National Statement (2007 updated 2018) is currently silent on the issue of the duration of ethics approvals, it might appear the Australian national framework should not impact on approvals. However, there is both a predictable impact and a real reason to rethink our current approach to the duration of approvals.

At this stage an update to Section 4 of the National Statement might be released in the next six months and an update to Section 5 will move out of the planning stage shortly.

Some institutions and committees tie the duration of ethics approvals and forced renewal around the timeframe during which the national arrangements might change (and perhaps inter alia institutional policy).  In Australia this might equate to around a five year approval duration.

The changed approach to updates to the National Statement means that such a cycle might not be especially helpful.

Suggested change to duration and monitoring procedures

We recommend institutions and HRECs do the following:

  1. Adopt a policy setting that the conduct of human research without prior ethics approval may be considered a breach of the Australian Code for the Responsible Conduct of Research (2018) and of the institution’s research integrity arrangements. This would be consistent with the Investigation good practice guide.
  2. Adopt a policy setting that any proposed change to a project must be submitted for prior review, otherwise the conduct of a project in a manner not in adherence to its ethics approval may be considered in breach of the Australian Code for the Responsible Conduct of Research (2018) and the institution’s research integrity arrangements.
  3. Adopt the practice of reminding researchers of their responsibility –
    1. to consider and safeguard the welfare of research participants
    2. to remain reflective of whether the risks of a project are justified by its benefits
    3. to remain reflective of the degree to which the project addresses the core ethical principles of the National Statement
    4. notify the HREC of any changes with regard to 3a-c.
    5. Notify the HREC if any participant raises a concern about the ethical design or conduct of a project. Including notifying the HREC if any participants withdraw consent because of a concern about ethical matters.
  4. Adopt a policy that a researcher who fails to meet the responsibilities described at 3 may be considered in breach of the Australian Code for the Responsible Conduct of Research (2018) and the institution’s research integrity arrangements.
  5. Adopt a policy that an ethics approval can be approved for the planned duration of a project.
  6. Adopt a policy that researchers must submit an ethical conduct report every 12 months during the currency of an ethics approval. Extended/repeated failure to do so may be considered a breach of the Australian Code for the Responsible Conduct of Research (2018) and the institution’s research integrity arrangements.
  7. Adopt a practice of timed reminders to researchers to provide overdue ethical conduct reports, culminating in breach proceedings[1].
  8. Adopt a policy and practice that every five years a clearance is active the research office/HREC assess whether there are circumstances that require a new ethics review of a project.

In most cases, a new review should not be required, but a standardised, clear checklist should be used to determine whether a new review is required. Subscribers to https://www.ahrecs.vip or https://www.patreon.com/ahrecs will find a suggested checklist for conducting such a check.

On this basis, I suggest research ethics review bodies/research offices can and should withdraw approval because of extended/repeated failure by a researcher to provide an ethical conduct report.  This however must be based upon documented policy and procedure.  It must also be foreshadowed in ethics approval notifications, report reminders and resource material.

[1] The approach here might be constrained by the research management system the institution is using.  This includes usefully tracking correspondence between the researchers and the research office.

This post may be cited as:
Allen, G. (3 March 2020) Lost time may never be found again but is it time to talk about the duration of ethics approvals?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/lost-time-may-never-be-found-again-but-is-it-time-to-talk-about-the-duration-of-ethics-approvals

The Ethics and Politics of Qualitative Data Sharing0

 

Mark Israel (AHRECS and Murdoch University) and Farida Fozdar (The University of Western Australia).

There is considerable momentum behind the argument that public data is a national asset and should be made more easily available for research purposes. In introducing the Data Sharing and Release Legislative Reforms Discussion Paper in September 2019, the Australian Commonwealth Minister for Government Services argued that proposed changes to data use in the public sector would mean that

Australia’s research sector will be able to use public data to improve the development of solutions to public problems and to test which programs are delivering as intended—and which ones are not.

Data reuse is seen as a cost-efficient use of public funds, reducing the burden on participants and communities. And, the argument is not restricted to government.  Journals, universities and funding agencies are increasingly requiring social scientists to make their data available to other researchers, and even to the public, in the interests of scientific inquiry, accountability, innovation and progress. For example, the Research Councils United Kingdom (RCUK) takes the benefits associated with data sharing for granted

Publicly-funded research data are a public good, produced in the public interest; Publicly-funded research data should be openly available to the maximum extent possible.

In Australia, both the National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC) have adopted open access policies that apply to research funded by those councils. While the ARC policy only refers to research outputs and excludes research data and research data outputs, the NHMRC strongly encourages open access to research data.

And yet, several social researchers have argued that data sharing requirements, developed in the context of medical research using quantitative data, may be inappropriate for qualitative research. Their arguments rest on a mix of ethical, practical and legal grounds.

In an article entitled ‘Whose Data Are They Anyway?’, Parry and Mauthner (2004) recognised unique issues associated with archiving qualitative data. The main considerations are around confidentiality (is it possible to anonymise the data by changing the details without losing validity) and informed consent (can participants know and consent to all potential future uses of their data at a single point in time?, and alternatively what extra burden do repeated requests for consent place on participants?).

There is also the more philosophical issue of the reconfiguration of the relationship between researchers and participants including moral responsibilities and commitments, potential violations of trust, and the risk of data misrepresentation. There are deeper epistemological issues, including the joint construction of qualitative data, and the reflexivity involved in preparing data for secondary analysis. As a result, Mauthner (2016) critiqued ‘regulation creep’ whereby regulators in the United Kingdom have made data sharing a moral responsibility associated with ethical research, when in fact it may be more ethical not to share data.

In addition, there is a growing movement to recognise the rights of some communities to control their own data. Based on the fundamental principle of self-determination, some Indigenous peoples have claimed sovereignty over their own data: ‘The concept of data sovereignty, … is linked with indigenous peoples’ right to maintain, control, protect and develop their cultural heritage, traditional knowledge and traditional cultural expressions, as well as their right to maintain, control, protect and develop their intellectual property over these.’ (Tauli-Corpuz, in Kukutai and Taylor, 2016:xxii). The goal is that its use should enhance self-determination and development.

To be fair to both the Commonwealth Minister and the RCUK, each recognises that data sharing should only occur prudently and safely and acknowledges that the benefits of sharing need to be balanced against rights to privacy (the balance proposed for earlier Australian legislative proposals have already been subjected to academic critique). The challenge is to ensure that our understanding of how these competing claims should be assessed is informed by an understanding of the nature of qualitative as well as quantitative data, of how data might be co-constructed or owned, of the cultural sensitivity that might be required to interpret and present it, and the damage that might be done as a result of misuse or  misrepresentation.

Acknowledgements
This article draws on material drafted for Fozdar and Israel (under review).
.

References:

Fozdar, F. and Israel, M. (under review) Sociological ethics. In Mackay, D. and Iltis, A. (eds) The Oxford Handbook of Research Ethics. Oxford: Oxford University Press.

Kukutai, T. and Taylor, J. (Eds.) (2016) Indigenous data sovereignty: Toward an agenda (Vol. 38). Canberra: ANU Press.

Mauthner, N.S. (2016) Should data sharing be regulated? In van den Hoonard, W. and Hamilton, A. (eds) The Ethics Rupture: Exploring alternatives to formal research-ethics review. University of Toronto Press. pp.206-229.

Parry, O. and Mauthner, N.S. (2004) Whose data are they anyway? Practical, legal and ethical issues in archiving qualitative research data. Sociology, 38(1), 139-152.

This post may be cited as:
Israel, M. & Fozdar, F. (5 February 2020) The Ethics and Politics of Qualitative Data Sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-ethics-and-politics-of-qualitative-data-sharing

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