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Language translation in data presentation 

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Language translation in data presentation 

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The issue of translation has been raised (e.g., para 11 - the influence of translation on participants' understanding + something has been mentioned in this thread above). What seems to be missing is a point on the impact of the subtleties of translation on data presentation (e.g., in the interview transcript and then in a quote in a publication) and the responsibility of the researcher to the participants to ensure the subtleties of the meanings are preserved as much as possible despite the inability to do word-by-word translation (which does not work)

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Para 3, p7 tiptoes into area where there may be different interpretations of actions in some settings.  Re-referral to an ethics committee appears to be the advice.  Might this be strengthened?

Para 11, page 10 has a reference to language, culture, interpretation and culture linked to participants’ understanding – under the banner of consent.

Para 17, page 12 about consent in ethnographic and observational studies (group and individual consent) might be developed further.

Para 51, p. 25 on protecting data internationally.

Para 73, p.32 on making research results available in local as well as more internationally accessible languages.

Para 76, p. 33 addressing sensitivity in publishing in specific contexts.

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There’s an oblique reference in the “Letter from the President” about “the growing impact on our research of internationalisation and globalisation”.

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The statements about ethical decision-making (p2)  and context-specific aspects of research sites are apt but may do with development.

The principle which relates to respect (p.4and p.5) might be developed to clarify on whose terms this might happen.

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BERA presents itself as “internationally renowned”, that it “strives to be inclusive”, encourages  “the development of productive relationships” beyond the UK, and “aspires to be the home of all educational researchers in the UK”.

Para 78-81, p.34 on authorship might benefit from a clear emphasis on working interculturally or internationally – there might also be a power dynamic to consider.

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Para 32, p.18 – aim to use another term instead of “”harvesting” when referring to research data.

Para 34 -39, pp.19-21 about potential harm arising from the research may need to be strengthened to emphasise the responsibility of the researcher and, possibly, the scope for error arising from unexpected ignorance or insensitivity.

Para 44, p.22 there appears to be an acceptance that a sponsor should have the right to un-anonymised, fully identifiable data.  The scope for mis-use is considerable and should be reviewed.  Requesting consent of people who are unlikely to be as aware of the consequences of this kind of consent for third-party , secondary data analysis as the researcher should be re-thought.

Para 52, p.26 consider removing the coy statement which suggests that there may be endemic low level corruption out there, “in some parts of the world.”  The UK is also in this category.

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|  Para 5, p8 could include modes of communicating research outcomes which are more accessible to those taking part in the research.

Paras 1 and 2, p6 present lists of responsibilities to participants – so are at a level of generality that might need clarifying.

Para 6, page 8 may be realistic – the notion of compromise – but it is important to tease this out further.

Para 7, p. 8 looks to a researcher’s competence to undertake the research.  This should be explored further – what might competence mean in international and/or intercultural research?

Para 19, p.13 about a researcher’s reflective research might helpfully refer to power in relationships in research.

Similarly, para 21, p14 relating to autoethnography.

Para 22, p.14 is a useful catch all paragraph about undertaking research outside of the UK.  The point about “cultural sensitivity” probably needs an explanation.

Para 28, p.17 on principles of consent and the re-use of data should be strengthened, especially as online and digital communications have become more prolific and accessible.

Para 33, p.19 where incentives (what to offer, how much to offer) is set in a context of “good sense” but could do with developing in the context of international and intercultural research.

Para 51, p. 25 on protecting data internationally – if the data cannot be adequately protected, maybe the research should not go ahead.

Para 73, p.32 on making research results available in local as well as more internationally accessible languages.  This could be expanded to other ways of ensuring that research findings are disseminated where oral traditions are more prevalent (for example) may be helpful.

Para 84, p.84 strengthen the paragraph about the physical and psychological wellbeing (including researcher safety) of the researcher as a function of the moral duty of institutions.

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See below generic signposting to international standards and legislation

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See below generic signposting to international standards and legislation

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The external informational resources linked below address important areas for the development, approval, training for and conduct of international human subjects research. Investigators and IRB members may find these resources helpful when considering the multitude of unique and complex issues related to international human subjects research. This list was compiled by the U-M Office of Research Compliance Review (ORCR).

Resources for Developing Programs

The following organizations provide information about International Research Ethics Committee (REC) and IRB standards for accreditation and capacity building:

SIDCER - The Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) is a network of independently established regional forums for ethical review committees, health researchers, and invited partner organizations with an interest in the development of ethical review.

AAHRPP - The Association for the Accreditation of Human Research Protection Programs, Inc. (AAHRPP), helps organizations worldwide strengthen their human research protection programs and provides a list of accredited organizations both nationally and internationally.

FERCAP - Forum for Ethical Review Committees in the Asian and Western Pacific Region (FERCAP), aims to improve understanding and implementation of ethical review for behavioral and biomedical researchers in Asia and the Western Pacific region.

CIOMS - The Council for International Organizations of Medical Sciences (CIOMS) is an international, non-governmental, non-profit organization established jointly by WHO and UNESCO in 1949.

International Laws, Guidance, and Essential Country Data

These resources represent a compilation of research laws and regulations in most countries in the world along with essential country information that is useful for IRB members who are reviewing studies being conducted abroad.

OHRP International Compilation of Human Research Standards - Web page containing a downloadable document listing over 1,000 laws, regulations, and guidelines on human subjects protections in over 100 countries and from several international organizations compiled by the HHS Office of Human Research Protections (OHRP).

OHRP Compilation of European GDPR Guidances - Web page containing links to country-specific documents providing guidance on the European Union's General Data Protection Regulation (GDPR, 2018) effect on US federally funded human subjects research, including legal, informed consent, and international data transfer guidance.

OISE: International Integrity Resources - National Science Foundation (NSF) Office of International Science & Engineering (OISE) provides resources to assist in the development of training and oversight plans for the responsible and ethical conduct of research in international contexts and understanding international codes of conduct.

World Bank Countries and Economies - Comprehensive national data for developing countries around the world; e.g., Agriculture & Rural Development, Aid Effectiveness, Climate Change, Economic Policy & External Debt, Education, Gender, Health, Infrastructure, Labor & Social Protection, Poverty, and more.

CIA World Fact Book - Provides information on the history, people, government, economy, geography, communications, transportation, military, and transnational issues for 267 world entities.

World Health Organization Country Information - A webpage listing all the countries that are members of the United Nations and the World Health Organization. Includes population statistics, information on national health systems, mortality, disease burden, and the health profile of each country.

International Ethical Standards and Procedures

Resources that describe the ethical issues and standards in conducting international research.

Informed Consent Approaches

Resources that describe issues related to written consent and alternate consent formats (e.g., oral, pictorial).

"How to Make Consent Informed: Possible Lessons from Tibet" - Suellen Miller, Phouc V. Le, Sienna Craig, Vincanne Adams, Carrie Tudor, Sonam, Nyima, Droyoung, Mingkyi Tshomo, Lhakpen, Michael Varner (2007). IRB: Ethics and Human Research, Vol. 29, No. 6 (Nov. - Dec. 2007), pp. 7 - 14 Published by: The Hastings Center Stable. (JSTOR.org)

"A pilot study of the quality of informed consent materials for Aboriginal participants in clinical trials" - Russell FM, Carapetis JR, Liddle H, et al. Journal of Medical Ethics, 2005: 31 (8): 490-494. Accessed 25/07/2012. (PDF)

"Informed Consent and Respecting Autonomy: What's Signature Got to Do with It?" - Wendler, D. and J. E. Rackoff (2001). World Medical Association (2009). Medical Ethics Manual, World Medical Association. (PDF)

"How Informed is Consent in Vulnerable Populations?" Experience using a continuous consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania." - Vallely, A., Lees, S., Chagi, C., Kasindi, S., Soteli, S., Kavit, N., Vallely, L., McCormack, S., Pool, R., Hayes, R., MDP. BMC Ethics: 11 (10); 2010. (Biomedcentral.com)

"A model designed to enhance informed consent: experiences from the HIV Prevention Trials Network" - Woodsong, C. and Karim, Q.A. (2005). Am J Public Health 95(3). (National Center for Biotechnology Information)

​Clinical Trials

Reviewing Clinical Trials: A Guide for the Ethics Committee (pdf) - Edited by Johann P.E. Karlberg (Clinical Trials Centre, Univ. of Hong Kong) and Marjorie Speers of AAHRPP. Sponsored by Pfizer, an AAHRPP accredited pharmaceutical company, through a "non-binding" grant.

"What makes clinical research in developing countries ethical?" Emanuel, E., Wendler, D., Killen, J., Grady, C. Journal of Infectious Disease; 930-937 (189); 2004.

"The Ancillary-Care Obligations of Medical Researchers Working in Developing Countries" PLoS Med 5(5): e90. Participants in the Georgetown University Workshop on the Ancillary-Care Obligations of Medical Researchers Working in Developing Countries (2008).

Ethical Considerations in Biomedical HIV Prevention Trials (pdf) - Excellent resource about conducting clinical trials internationally published by United Nations AIDS and the World Health Organization in 2007 (with additional information added in 2012). See the UNAIDS website (www.unaids.org) for available foreign language translations.

Ethical and Policy Issues in Int'l Research: Clinical Trials in Developing Countries (pdf) - National Bioethics Advisory Commission report discusses ethical issues when conducting research in countries where human participant protection systems equivalent to the U.S. have not been established.

Training

Resources that provide training on the ethical principles, standards, and procedures associated with human subjects research.

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International Human Subject Research Resources

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The external informational resources linked below address important areas for the development, approval, training for and conduct of international human subjects research. Investigators and IRB members may find these resources helpful when considering the multitude of unique and complex issues related to international human subjects research.

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Standards and legislation assumptions are deliberately vague but any assumptions that these are UK/Western biased need to be challenged

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Standards and legislation assumptions are deliberately vague but any assumptions that these are UK/Western biased need to be challenged

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Need to say more about power and the positionality of the researcher in entering research settings

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Need to say more about power and the positionality of the researcher in entering research settings

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Should remember to consider researcher wellbeing and notions of danger in different settings including changing digital contexts

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Should remember to consider researcher wellbeing and notions of danger in different settings including changing digital contexts

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A case study would be useful which illustrates how negotiate between different ethical guidelines

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A case study would be useful which illustrates how negotiate between different ethical guidelines

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Ensure how a researcher will face cultural differences in engaging in research as well as the standards and principles 

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Ensure how a researcher will face cultural differences in engaging in research as well as the standards and principles 

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Need to respect balance between competing and conflicting rights a researcher needs to balance - with a good contextual decision

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Need to respect balance between competing and conflicting rights a researcher needs to balance - with a good contextual decision

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Should be prepared to withdraw from research when it does not feel matches principles as a researcher (not only as a participant) 

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Should be prepared to withdraw from research when it does not feel matches principles as a researcher (not only as a participant) 

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Look at the New Zealand example of how frame their guidance and how they make this uplifting, practical and respectful for the revision

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Look at the New Zealand example of how frame their guidance and how they make this uplifting, practical and respectful for the revision

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The world has become smaller through going online globally and is meaning that we need to ensure we pay attention to working towards social justice

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The world has become smaller through going online globally and is meaning that we need to ensure we pay attention to working towards social justice

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Need cultural awareness to be able to navigate research in respectful ways, which need to be flexible 

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Need cultural awareness to be able to navigate research in respectful ways, which need to be flexible 

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Listening and bringing to the attention of is insufficient eg page 2

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Listening and bringing to the attention of is insufficient eg page 2

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Need guidance not to be brought in an abstract way but needs to be used as a start of a dialogue to see if possible to carry out this research in ways in which all can be happy with

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Review of the principles underpinning the 4th edition seem still helpful

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Review of the principles underpinning the 4th edition seem still helpful

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Are these considered universal internationally and interculturally?

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Can we guide researchers working in collaboration to define what is a shared agreement about what 'participation' is and what is 'consent' which can help in ownership, empowerment and putting into practice principle of mutual respect - to take back to ethical committees if present

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Can we guide researchers working in collaboration to define what is a shared agreement about what 'participation' is and what is 'consent' which can help in ownership, empowerment and putting into practice principle of mutual respect - to take back to ethical committees if present

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Gatekeepers and those helping with access to a setting will be important as translation plays a role in communication with participants 

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Gatekeepers and those helping with access to a setting will be important as translation plays a role in communication with participants 

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Needs to be accurate and reflecting nuances of all groups
We need to ensure that don't reinforce marginalisation by not reaching out to all cultures and languages

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Creating spaces for research ethics to be incorporated into other languages might be important to show support for eg Welsh

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Creating spaces for research ethics to be incorporated into other languages might be important to show support for eg Welsh

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Where do we sit alongside US and Canadian and Australasian codes of ethics? 

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Where do we sit alongside US and Canadian and Australasian codes of ethics? 

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Include reflections on these in our desk-based research

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Protection is not the main responsibility - but also the need to empower, facilitate voice, support rights

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Protection is not the main responsibility - but also the need to empower, facilitate voice, support rights

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Might need to counter the weight given to protection eg data protection was the sign of the times when the 4th edition were compiled
The GDPR and data transfer arrangements don't apply everywhere (See other comments)

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Data storage and handling advice internationally beyond GDPR...

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Data storage and handling advice internationally beyond GDPR...

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Where there isn't such protection in place in certain jurisdictions and may be more dangerous for researchers is there advice we can refer researchers to?

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Potentially uneven representation of international voices in the digital space

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Potentially uneven representation of international voices in the digital space

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Regarding inclusivity but in international digital research - the researcher should stay tuned to the uneven nature of technological development and digital practices in different parts of the world which may make digital research focused on capturing international voices gravitate towards reproducing unequal power dynamics in the world and marginalisation

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The responsibility of the researcher to the participants to ensure the subtleties of the meanings are preserved as much as possible despite the inability to do word-by-word translation (which does not work)

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A new section on 'the responsibilities to the world community'?

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A new section on 'the responsibilities to the world community'?

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- Regarding inclusivity but in international digital research - the researcher should stay tuned to the uneven nature of technological development and digital practices in different parts of the world which may make digital research focused on capturing international voices gravitate towards reproducing unequal power dynamics in the world and marginalisation
- the researcher should the transparent about the 'boundaries' of the generalisability of their research so that the international is not the same as Western
- the rise of accountability and benchmarking in research (e.g., REF in the UK, funding calls for specific topics) a lot of which is space by the West has, arguably, started shaping research foci of new project. Researchers should try to maintain genuine research enquiry interest in this context
- add to international accessibility of findings - striving for open access of publications (as some universities in the world cannot pay for access to digital libraries and journals)

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Challenge that we should always work in English and publish in English and respect multiple languages of our international collaborations and knowledge building

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Challenge that we should always work in English and publish in English and respect multiple languages of our international collaborations and knowledge building

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Need to be very careful of data sharing for transcription and translation (Merris to expand on please)

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Need to be very careful of data sharing for transcription and translation (Merris to expand on please)

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Could have two versions of the guidelines - a straight version and one with pop ups linking to other resources with concrete examples

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Could have two versions of the guidelines - a straight version and one with pop ups linking to other resources with concrete examples

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An international project case study would be a good idea - which all gave an example from their own perspective from their different cultural, international positions to explore ethical research ways of working

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An international project case study would be a good idea - which all gave an example from their own perspective from their different cultural, international positions to explore ethical research ways of working

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Could cross link to the BERA blog series and relevant Research Intelligence special editions as these could continue to explore the issues between editions of the guidelines

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Could cross link to the BERA blog series and relevant Research Intelligence special editions as these could continue to explore the issues between editions of the guidelines

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Policy and secondary documents in the public domain (eg social media, websites and archival) based case study would be useful to explore - as to why it is linked to ethical issues which need to be considered 

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Policy and secondary documents in the public domain (eg social media, websites and archival) based case study would be useful to explore - as to why it is linked to ethical issues which need to be considered 

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Need to consider ownership of the data as content is created by humans

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Major differences in advice on ethical committees whether within a nation (as well as internationally) are causing tensions in whose rules to apply and whose processes should be applied

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Major differences in advice on ethical committees whether within a nation (as well as internationally) are causing tensions in whose rules to apply and whose processes should be applied

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Is an overlap between research integrity and research ethical responsibilities - issues with data protection, health and safety risk assessment, legal - overlapping with one another

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Add to community of educational researchers

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Add to community of educational researchers

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To respect all possible ways of coming to know - interdisciplinary respect
Supportive
Open-minded
Pragmatically

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Concern that all very worthwhile questions being raised and yet how do we make this pragmatically useful and not become too lengthy

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Concern that all very worthwhile questions being raised and yet how do we make this pragmatically useful and not become too lengthy

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Case Studies are a good way to unpack the nuances whilst keeping the guidelines themselves concise

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A favourable opinion will reassure a researcher to get started and yet should not be fixed to this
Should be an amendment possibility to be coached through the changes you feel are needed as a result of what learn in a setting
This would be a chance to get further support and reassurance