TAG ARCHIVES FOR data sharing

11
Aug2016

ICYMI – From the Director: Clinical Trial Data Sharing, the Law, and Reality

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11 Aug
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In Case You Missed It (ICYMI): From time-to-time, PRIM&R will feature particularly well-received posts from the recent past.  These posts remain timely as topics of discussion in the fields of research ethics, human subjects protections, or animal care and use. Highlighting them now enables readers who may have missed them a chance to read and comment. In this ICYMI, PRIM&R Executive Director Elisa Hurley explores the complex issue of clinical trial data sharing and its implications for the protection of human research subjects.

Though not a new issue, clinical trial data sharing has over the past several months taken center stage within the medical research community. In December 2015, a STAT Read more

3
Jun2016

OkCupid and the Ethics of Big Data Research

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3 Jun
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We clearly have entered the era of big data. Armed with petabytes of transaction data, clickstreams and cookie logs, as well as data from social networks, mobile phones, and the "internet of things," a wide range of economic interests, including consumer marketing, health care, manufacturing, education, and government, are now in pursuit of the value of data-driven decision-making that big data promises.

At the same time, the big data that increasingly fuels economic decision-making has emerged as a rich terrain for engaging in academic research and experimentation: think of the Facebook emotional contagion experiment of 2014, where the news feeds of nearly 700,000 users were altered [...] Read more

27
May2016

Research Ethics Roundup: Historic USDA Fine for Violations of Animal Welfare Act, Legal Challenge to OkCupid Data Release, and More

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27 May
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This week’s Research Ethics Roundup focuses on three different legal actions: one of the largest US Department of Agriculture (USDA) penalties in history is being issued over Animal Welfare Act violations; ACLU’s complaint against Myriad Genetics; and OkCupid’s legal actions after a dataset was controversially released by a researcher. Read more

25
Apr2016

Response to the International Committee of Medical Journal Editors’ Proposed Requirements for Sharing Clinical Trial Data

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25 Apr
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Recently, PRIM&R submitted comments to the International Committee of Medical Journal Editors (ICMJE) in response to their proposed requirements for sharing clinical trial data. PRIM&R stated that we fully support initiatives to promote data sharing on the grounds it enhances the value of clinical research and the participation of human research subjects. Read more