Data sharing in genomics — re-shaping scientific practice

Kaye, Jane; Heeney, Catherine; Hawkins, Naomi; Vries, Jantina de; Boddington, Paula

doi:10.1038/nrg2573

Cited by 259 publications

(235 citation statements)

References 25 publications

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“…The question now is how to share data rather than whether data should be shared at all (36). These policies have created a climate in which data sharing is becoming more the norm---not just for large sequencing projects but for many different types of studies.…”

Section: Open Access Policiesmentioning

confidence: 99%

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The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Kaye

2015

Ethics, Law and Governance of Biobanking

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Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.

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Section: Open Access Policiesmentioning

confidence: 99%

“…These studies compare the genomes of healthy controls with those of people who exhibit a disease or a specific trait in order to identify the genetic variants associated with that disease or trait (36). To obtain the sample sizes needed to do this, researchers have developed new models of collaboration and data sharing.…”

Section: New Modelsmentioning

confidence: 99%

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Kaye

2015

Ethics, Law and Governance of Biobanking

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“…Access and sharing policies have been developed over the years 6 . However, the incentivization of bioresources to promote access needs to be balanced with appropriate provisions compatible with all stakeholder interests, that is, proper recognition of scientific contribution and sustainability supported by the capacity for measuring their own resource use and impact.…”

mentioning

confidence: 99%

The role of a bioresource research impact factor as an incentive to share human bioresources

2011

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“…40 The MICROS and ERF studies state that anonymised data will be shared with research partners for specific research purposes only. The ERF leaflet explains that research partners will only have access to coded data.…”

Section: Disclosure Of Genetic Datamentioning

confidence: 99%

Comparison of participant information and informed consent forms of five European studies in genetic isolated populations

et al. 2009

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on behalf of the EUROSPAN consortiumFamily-based research in genetically isolated populations is an effective approach for identifying loci influencing variation in disease traits. In common with all studies in humans, those in genetically isolated populations need ethical approval; however, existing ethical frameworks may be inadequate to protect participant privacy and confidentiality and to address participants' information needs in such populations. Using the ethical-legal guidelines of the Council for International Organizations of Medical Sciences (CIOMS) as a template, we compared the participant information leaflets and consent forms of studies in five European genetically isolated populations to identify additional information that should be incorporated into information leaflets and consent forms to guarantee satisfactorily informed consent. We highlight the additional information that participants require on the research purpose and the reasons why their population was chosen; on the potential risks and benefits of participation; on the opportunities for benefit sharing; on privacy; on the withdrawal of consent and on the disclosure of genetic data. This research raises some important issues that should be addressed properly and identifies relevant types of information that should be incorporated into information leaflets for this type of study.

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Data sharing in genomics — re-shaping scientific practice

Cited by 259 publications

References 25 publications

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

The role of a bioresource research impact factor as an incentive to share human bioresources

Comparison of participant information and informed consent forms of five European studies in genetic isolated populations

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