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privacy_interests_in_research [2016/07/06 10:00] wikiadmin [General Issues] |
privacy_interests_in_research [2016/08/13 10:32] wikiadmin [Issues in Non-applicability Clause in RA 10173] |
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| - | **Note:** A public consultation on the Implementing Rules and Regulations (IRR) of the Data Privacy Act will be on July 13, 2016, 8am-5pm, University of the Philippines, DIliman. Sign up here: **[[http://privacyph.org/irrsignup|privacyPH.org/irrsignup]]**\\ | ||
| Latest version of the IRR: [[http://privacyPH.org/dpairr|privacyPH.org/dpairr]] | Latest version of the IRR: [[http://privacyPH.org/dpairr|privacyPH.org/dpairr]] | ||
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| - | This wiki aims to discuss privacy issues in health research and to propose specific research-related implementing rules and regulations (IRR) for {{::joint_ao_2016-0002_privacy_guidelines_for_the_implementation_of_phie.pdf|the Privacy Guidelines}} (based on [[http://www.gov.ph/2012/08/15/republic-act-no-10173/|RA 10173]]). The main IRR-drafting exercise for the Guidelines is done [[:consolidated_workshop_outputs|here]]. While the immediate application of the exercise is limited to the Philippine Health Information Exchange (PHIE), the rules crafted here may have an impact on health research in the Philippines in general. In a parallel development, the National Privacy Commission (NPC) has just been constituted. You may also consider engaging the Commission directly on special issues in research privacy. \\ | + | This wiki aims to discuss privacy issues in health research and to propose specific **Privacy Code** for {{::joint_ao_2016-0002_privacy_guidelines_for_the_implementation_of_phie.pdf|the Privacy Guidelines}} (based on [[http://www.gov.ph/2012/08/15/republic-act-no-10173/|RA 10173]]). The main Code-drafting exercise for the Guidelines is done [[:consolidated_workshop_outputs|here]]. While the immediate application of the exercise is limited to the Philippine Health Information Exchange (PHIE), the rules crafted here may have an impact on health research in the Philippines in general. In a parallel development, the National Privacy Commission (NPC) has just been constituted. You may also consider engaging the Commission directly on special issues in research privacy. \\ |
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| - | **Privacy rules** relating to research (especially health research) are proposed towards the end of this page. Well thought-out changes, additions, suggestions, comments are most welcome.\\ | + | **Privacy Code** relating to research (especially health research) are proposed towards the end of this page. Well thought-out changes, additions, suggestions, comments are most welcome.\\ |
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| * "strict confidentiality" - does this mean having the same data security rules for research?\\ | * "strict confidentiality" - does this mean having the same data security rules for research?\\ | ||
| * Section 4(d) appears to provide a global "non-applicability" for research. But that doesn't sit well with the above provisions that are clearly about limited exception. Having a blanket exception does not necessarily help research because that will mean having a research regime incompatible at least with its North American and EU counterparts that extend privacy protection to research and data subjects alike. That can mean, in part, being excluded from multi-country research projects. There's also the risk of databases just being arbitrarily labelled as part of "research" in order to avoid privacy regulations. \\ | * Section 4(d) appears to provide a global "non-applicability" for research. But that doesn't sit well with the above provisions that are clearly about limited exception. Having a blanket exception does not necessarily help research because that will mean having a research regime incompatible at least with its North American and EU counterparts that extend privacy protection to research and data subjects alike. That can mean, in part, being excluded from multi-country research projects. There's also the risk of databases just being arbitrarily labelled as part of "research" in order to avoid privacy regulations. \\ | ||
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| + | **Inclusion of Research in Privacy Coverage as Part of the International Norm**\\ | ||
| + | * EU [[http://eur-lex.europa.eu/legal-content/EN/ALL/?uri=CELEX%3A32016R0679|General Data Protection Regulation]] | ||
| + | * [[http://www.legislation.govt.nz/act/public/1993/0028/latest/whole.html|Privacy Act 1993]] (New Zealand) | ||
| + | * [[http://www.ipc.nsw.gov.au/sites/default/files/file_manager/privacy_statutory_guidelines_research.pdf|Statutory Guidelines on Research]] (Australia) | ||
| + | * [[http://www.ipc.nsw.gov.au/sites/default/files/file_manager/PID%20on%20Disclosure%20for%20Research%20-%20FINAL.pdf|Direction on Disclosures of Information by Public Sector Agencies for Research Purposes]] (Australia) | ||
| + | * [[https://www.oaic.gov.au/privacy-law/privacy-registers/privacy-codes/privacy-market-and-social-research-code-2014|Privacy (Market and Social Research) Code 2014]] (Australia) | ||
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| - | ##Proposed Rules | + | ##Proposed Privacy Code for consideration and discussions:\\ |
| - | Rules for consideration and discussions:\\ | + | |
| //Research Subject.//\\ | //Research Subject.//\\ | ||
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| ##See Also | ##See Also | ||
| - | * [[consolidated_workshop_outputs|Privacy Set of Rules (SOR)]] | + | * [[consolidated_workshop_outputs|Health Privacy Code]] |
| ##References: | ##References: | ||
| * Wiles,R., Prosser,J., Bagnoli A., Clark A., Davies K., Holland, S., Renold E., (2008). Visual Ethics: Ethical Issues in Visual Research. Retrieved from http://eprints.ncrm.ac.uk/421/1/MethodsReviewPaperNCRM-011.pdf | * Wiles,R., Prosser,J., Bagnoli A., Clark A., Davies K., Holland, S., Renold E., (2008). Visual Ethics: Ethical Issues in Visual Research. Retrieved from http://eprints.ncrm.ac.uk/421/1/MethodsReviewPaperNCRM-011.pdf | ||
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