Proposed Ways of Addressing Clause Samples

Proposed Ways of Addressing. Issues‌ Table 2: Recommendations from SP12 data Protection and Privacy Opinion Number Recommendation Implementation 1 Create a coherent approach to data governance that covers all aspects of research, including data generated, data imported, and data exported by the HBP. Data protection should be one component of this data governance structure. It is likely that this will be achieved by: A Data Governance Working Group (DGWG) has been set up, and continues working on all aspects of data in the HBP. a Appointing a person who takes responsibility for privacy and data protection across the HBP. This person should be a senior leader and member of the Scientific and Infrastructure Board of the HBP. A proposal for a data protection officer role has been formulated by the DGWG and agreed to by HBP directorship. b Setting up a Data Governance Committee for the HBP comprised of representatives of all stakeholders involved in data collection and processing, and representatives of patient groups and of the general public to review privacy and data protection processes. The DGWG is working with SP representatives on these and related issues. Other activities concerning informed consent are underway (e.g. the creation of an SOP, and the formulation of a stakeholder forum). c Establishing a regular Privacy Impact Assessment (PIA) for the HBP, and a Research Audit structure that can identify, authorise and audit all users of the MIP. Ethics management is in regular contact with SP8 especially regarding the formulation of a PIA. The DGWG discusses related issues especially in anticipation of the GDPR. d Ensuring principles of data stewardship which will include finding ways of informing participants in a simple way of how their data has contributed to the public good. This may be achieved by public Some provision in this area is already expected by local ethics regulations, and some survey respondents were: “...unsure whether very *global* engagement and a dissemination programme for the results of the HBP dissemination program are actually informative for research participants.” In complement, “...short cycles that go from the acquired data to the actual results” might be preferable and be pursued on a broad agenda of ‘data stewardship’ exploration. See below (4.1) 2 As a general rule, adopt a privacy model when anonymising data in view of releasing them for secondary use. A privacy model specifies a precise privacy guarantee that can be explained to any interested party....
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