- Dec 2019
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wellcomeopenresearch.org wellcomeopenresearch.org
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Policymakers in Guinea
Given that the Case studies were broken down by country, I would have expected at least the first paragraph of this section to bind the Case studies together from a policy diffusion/ policy learning perspective (e.g. in terms of more or less strenuous conditions during outbreaks or 'peacetime'), before zooming back in to highlight certain aspects from the Case studies.
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Similarly
Odd way of referring to a statement not in the previous sentence but in the sentence before that.
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s
delete the "s"
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Not sure what that dash is doing here.
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SOP
I assume this stands for "Standard Operating Procedures", but it was not defined as such.
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broaden the definition of a ‘researcher’ to include a molecular biologist and basic science researcher, and to widen the scope of research ethics
In order to adapt to new contexts, policy diffusion often triggers such semantic drift of key concepts.
Would be great to see that linked to the policy learning framework.
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Ideally, international research collaboration that involves the sharing of biological materials and data should contribute to capacity building, which includes the capability of an ethics committee to support ethically sound arrangements that engender credibility and trust22.
Perhaps some comments as to how the international guidelines cover local training and capacity building would be a useful addition.
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CIOMS Guidelines serve as a helpful reference in the drafting of a new regulation
Good example of policy diffusion
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In international collaborations, an agreement may be imposed on local researchers with no possibility of negotiating favourable terms on confidentiality, intellectual property rights, return of results and benefit sharing.
Clear example of equity being neglected
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appropriately drafted material transfer agreement (MTA), as there is currently no legal requirement to that effect
Are there templates available for "appropriately drafted MTAs"?
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based on the recommendations and standards set out by international organisations like the World Medical Association and CIOMS
Reference to policy diffusion
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Regarding recommended practices in international ethical policy documents, these are not sufficiently disseminated or internalized, hence gaps still exist in relation to best practices and critical aspects of data practices. To address this challenge, it is not only essential to disseminate and promote these policies, but to also adapt them to the contexts and situations where they are applicable through training and capacity building.
Given that the article is framed as being about policy diffusion and using a policy learning framework, I would have expected more details here.
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Urgency Operation Center
This seems to exist already, but still I could not find it.
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Coordination Cell Unit
Does this exist already? I could not find it.
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greater integration of data, data security, and data sharing through the establishment of a searchable database.
Would be great to connect these efforts with others who work on this from the data end, e.g. RDA as mentioned above.
Also, the presentation at http://www.gfbr.global/wp-content/uploads/2018/12/PG4-Alpha-Ahmadou-Diallo.pptx states
This data will be made available to the public and to scientific and humanitarian health communities to disseminate knowledge about the disease, support the expansion of research in West Africa, and improve patient care and future response to an outbreak.
but the notion of public access is not clearly articulated in the present article.
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12
This is a nice conference report, but are there any slides or recordings available from the event as well?
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platform
Does it have a name and online presence? The details provided here go beyond what's given in reference 13, but some more detail would still be useful, e.g. to connect the initiative to efforts directed at data management and curation more generally, for instance in the framework of the Research Data Alliance, https://www.rd-alliance.org/ .
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establishment of a post-Ebola crisis biological materials and data-sharing platform
Very useful initiative!
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Key ethical goals of an integrated platform to access biological samples and related data have early-on in the discussions been identified as protection of human rights and transparency, equitable service delivery and reduction of the information gap within the scientific and medical communities.
Odd word order
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The members of the Steering Committee sit for a three-year term, and is renewable once.
The sentence is non-grammatical.
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apply
Some more details would be useful here, perhaps in a dedicated Methods section.
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four theories
What about at least mentioning the other three?
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Manjulika Vaz1*
ORCID is missing
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meeting of the Global Forum in Stellenbosch, South Africa, on 13 and 14 November 2018
I followed this remotely via Twitter (don't know whether other remote channels were available). My notes on this sit at https://github.com/Daniel-Mietchen/events/issues/508 .
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In three of these countries (i.e. Guinea, Argentina and India), the CIOMS Guidelines have had direct influence over their domestic governance policies on the subject. Its impact was greatest for Guinea and Argentina, whose governance policies had to be adapted in response to the Ebola virus epidemic in West Africa and the Zika virus epidemic in Latin America. In both countries, sharing of biological materials and related data with international organisations increased significantly to meet therapeutic and research needs during the outbreaks. International organisations have had a comparatively greater role in bringing about policy change in Guinea when compared with Argentina, mainly due to the fragility of the health system in Guinea in 2014. In contrast, policy in India and in Malawi occurred under less strenuous conditions. This may account for the relatively greater emphasis on control and limits to cross-border transferability in their policies when compared with those of Guinea and Argentina.
I would have expected the Background section to set the stage for the case studies, not to sum up their results.
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1
Given that this document cites a number of non-persistent web resources, I have archived a copy of https://wellcomeopenresearch.org/articles/4-170/v1 at http://web.archive.org/web/20191224000829/https://wellcomeopenresearch.org/articles/4-170/v1 using the "Save outlinks" mode.
Probably a good idea to do this routinely for all articles in the journal.
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https://apps.who.int/iris/bitstream/handle/10665/205944/WHO_HIS_SDS_2016.2_eng.pdf;jsessionid=A4CF65ABC4B7A3FF8C19502C4EF9905F?sequence=1.
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jsessionid=A4CF65ABC4B7A3FF8C19502C4EF9905F?sequence=1.
Not sure what the purpose of quoting with session ID is here, as these are usually non-persistent and not usable by anyone other than the website operator.
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explain as follows
It could be made clearer that the following is quoted directly from the CIOMS document, and specifically the Governance section of the Commentary on Guideline 11.
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CIOMS Guidelines
It could be made clearer that this refers to the document cited in Footnote 1.
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https://www.who.int/blueprint/what/research-development/guidance_for_managing_ethical_issues.pdf?ua=1.
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Available at: https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf.
This URL seems very unstable, so I archived the file at http://web.archive.org/web/20191223233751/https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf .
In general, it is good practice to provide not just links but also an archived version when citing a URL.
Of course, it would be even better if policies themselves were FAIR (Findable, Accessible, Interoperable and Reusable), as discussed, for instance, in https://github.com/Daniel-Mietchen/events/blob/master/PIDapalooza-2018.md .
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Athula Sumathipala
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St John's Medical College and St John's Research Institute
As far as I can tell, the two are (nowadays at least) separate entities, so why are they listed under the same affiliation?
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Alpha A. Diallo https://orcid.org/0000-0001-5149-24454*
That ORCID profile has this paper as its only entry. Is this correct?
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Ana G. Palmero https://orcid.org/0000-0002-5781-90712*
That ORCID profile has this paper as its only entry. Is this correct?
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OPP1151904
Would be nice if that identifier would lead somewhere useful. A web search for it yielded https://doi.org/10.12688/wellcomeopenres.15442.1 , which is also included in the collection "GFBR: The ethics of data sharing and biobanking in health research" available via https://wellcomeopenresearch.org/collections/gfbr18 .
Tags
- capacity building
- metadata
- policy diffusion
- Findability
- link rot
- definitions
- equity
- affiliation
- research funding
- remote attendance
- scholarly profile
- event documentation
- policy learning
- semantic drift
- data security
- data integration
- data sharing
- narrative flow
- citation
- data management
- material transfer agreement
- data sharing platform
- persistent identifiers
- web archiving
Annotators
URL
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