Beyond open data: realising the health benefits of sharing data: Table 1

Pisani, Elizabeth; Aaby, Péter; Breugelmans, J. Gabrielle; Carr, David L.; Groves, Trish; Helinski, Michelle E. H.; Kamuya, Dorcas; Kern, Steven E.; Littler, Katherine; Marsh, Vicki; Mboup, Souleymane; Merson, Laura; Sankoh, Osman; Serafini, Micaela; Schneider, Martin; Schoenenberger, Vreni; Guérin, Philippe J.

doi:10.1136/bmj.i5295

Cited by 71 publications

(56 citation statements)

References 28 publications

(23 reference statements)

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“…Successful data sharing platforms in genomics and infectious disease research are usually carried forward by closely-knit communities of practice which collaborate on more than just standards. Replicating the success of such Systems for scientific credit for reuse which do not reproduce current "publish or perish" reward systems platforms in other areas will likely also require organisation and governance, collective oversight and reward mechanisms, as well as coordination of research efforts [17]. Moreover, due to privacy concerns, many forms of individual-level genomics data cannot simply be made publicly available for download without some form of access control.…”

Section: Facilitating Data Sharing and Reusementioning

confidence: 99%

The FAIR guiding principles for data stewardship: fair enough?

2018

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The FAIR guiding principles for research data stewardship (findability, accessibility, interoperability, and reusability) look set to become a cornerstone of research in the life sciences. A critical appraisal of these principles in light of ongoing discussions and developments about data sharing is in order. The FAIR principles point the way forward for facilitating data sharing more systematically-provided that a number of ethical, methodological, and organisational challenges are addressed as well.

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Section: Facilitating Data Sharing and Reusementioning

confidence: 99%

The FAIR guiding principles for data stewardship: fair enough?

2018

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“…Researchers seek more access to linked data sets, including data from new sources and types of data, such as patient-reported information, genomic information, data from wearable devices, and social media. Multiple, linked data sets are increasingly available to and used by both public and private organizations [3]. The increasing digitization of data, technical advances in linking complex data sets, and scientific advances in analyzing the resulting data all contribute to this trend.…”

Section: Introductionmentioning

confidence: 99%

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

Teng

Bentley

Burgess

et al. 2019

IJPDS

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IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK). Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends. ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.

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“…The integrated addendum is silent on a number of topics which have increasingly been at the core of the scientific and ethics debate, and on which sponsors and investigators still have no concrete regulatory guidance. These include the ethical and operational issues related to biobanking (30,31), the export of biological samples from the countries where the trials have been conducted (32)(33)(34),and data sharing (35)(36)(37)(38)(39)(40). Recently, the World Medical Association issued the Declaration of Taipei on Ethical Considerations on Health Databases and Biobanking (41), which dwells on the ethical principles underlying the design, set-up and use of "health databases" and "biobanks", and the related governance principles and requirements.…”

Section: Discussionmentioning

confidence: 99%

The revision of the ICH Good Clinical Practice guidelines: a missed opportunity?

Ravinetto

2017

IJME

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The Guideline for Good Clinical Practice (GCP) of the International Conference of Harmonisation (ICH) is an international standard for the ethical and scientific quality of the designing, conducting, recording and reporting of trials that involve the participation of human subjects. Today, most regulators and funding agencies follow the ICH guidelines. These were drawn up by a small number of regulatory agencies and drug companies from high-income countries and do not pay sufficient heed to the problematic aspects of clinical trials in the low- and middle-income countries. A recent process of revision of the ICH GCP, which focused mainly on improving the use of technology and quality systems in clinical trials, did not remedy the pre-existing divide between the guideline, ethics and the challenges of globalised clinical research. It is not clear whether another, newly announced "renovation" of the ICHGCP (a "reflection paper" was open for public comment until March 11, 2017) will succeed in addressing this divide.

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Beyond open data: realising the health benefits of sharing data: Table 1

Cited by 71 publications

References 28 publications

The FAIR guiding principles for data stewardship: fair enough?

The FAIR guiding principles for data stewardship: fair enough?

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

The revision of the ICH Good Clinical Practice guidelines: a missed opportunity?

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