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Balancing benefits and harms: privacy protection policies.
Sarpatwari A, Gagne JJ. Sarpatwari A, et al. Pharmacoepidemiol Drug Saf. 2016 Aug;25(8):969-71. doi: 10.1002/pds.4048. Epub 2016 Jun 9. Pharmacoepidemiol Drug Saf. 2016. PMID: 27278106 No abstract available.
Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit.
Brown SM, Aboumatar HJ, Francis L, Halamka J, Rozenblum R, Rubin E, Sarnoff Lee B, Sugarman J, Turner K, Vorwaller M, Frosch DL; Privacy, Access, and Engagement Task Force of the Libretto Consortium of the Gordon and Betty Moore Foundation. Brown SM, et al. J Am Med Inform Assoc. 2016 Sep;23(5):995-1000. doi: 10.1093/jamia/ocv182. Epub 2016 Mar 16. J Am Med Inform Assoc. 2016. PMID: 26984048 Free PMC article.
Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information …
Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting
Respect, justice and learning are limited when patients are deidentified data subjects.
Gross MS, Hood AJ, Rubin JC, Miller RC Jr. Gross MS, et al. Learn Health Syst. 2022 Mar 4;6(3):e10303. doi: 10.1002/lrh2.10303. eCollection 2022 Jul. Learn Health Syst. 2022. PMID: 35860318 Free PMC article.
Next, we consider the effectiveness of deidentification for minimizing harms via privacy protection and maximizing benefits via promoting learning and translational care. ...Such a system may permit exacerbation of health disparities as it accelerates …
Next, we consider the effectiveness of deidentification for minimizing harms via privacy protection and maximizing b
Perinatal substance abuse and human subjects research: are privacy protections adequate?
Marshall MF, Menikoff J, Paltrow LM. Marshall MF, et al. Ment Retard Dev Disabil Res Rev. 2003;9(1):54-9. doi: 10.1002/mrdd.10060. Ment Retard Dev Disabil Res Rev. 2003. PMID: 12587139 Review.
We determine that current protective mechanisms may be insufficient to protect research subjects and that investigators and IRB members are often ignorant of the risks imposed by punitive policy approaches to perinatal substance abuse or fall prey to the same …
We determine that current protective mechanisms may be insufficient to protect research subjects and that investigators and IR …
Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.
Etchegary H, Darmonkov G, Simmonds C, Pullman D, Rahman P. Etchegary H, et al. BMC Med Ethics. 2023 Oct 7;24(1):81. doi: 10.1186/s12910-023-00967-0. BMC Med Ethics. 2023. PMID: 37805493 Free PMC article.
BACKGROUND: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. ...Participant information materials and informed consent documents …
BACKGROUND: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced
The Deceased, Public Health, and Research: Proposing Legal Reforms.
Baltzan I, Knoppers BM, Nemetz ETA, Lerner-Ellis J, Bernier A, Devon K. Baltzan I, et al. Biopreserv Biobank. 2024 Aug;22(4):321-324. doi: 10.1089/bio.2023.0026. Epub 2023 Nov 9. Biopreserv Biobank. 2024. PMID: 37943606
In Ontario, research ethics boards can grant waivers of consent if the Tri-Council Policy Statement-2 conditions are met. These include that the individual is not harmed, that the materials are essential to the research, and that privacy will be protected
In Ontario, research ethics boards can grant waivers of consent if the Tri-Council Policy Statement-2 conditions are met. These inclu …
The Ethics in Synthetics: Statistics in the Service of Ethics and Law in Health-Related Research in Big Data from Multiple Sources.
Bassan S, Harel O. Bassan S, et al. J Law Health. 2018;31(1):87-117. J Law Health. 2018. PMID: 30889335
The National Institution of Health [NIH] Data Sharing Policy and Implementation Guidance similarly states that data necessary for drawing valid conclusions and advancing medical research should be made as widely and freely available as possible (in order to share the be
The National Institution of Health [NIH] Data Sharing Policy and Implementation Guidance similarly states that data necessary for dra …