scholarly journals Towards a Paradigm Shift in Governing Data Access and Related Intellectual Property Rights in Big Data and Health-Related Research

Author(s):  
Pamela Andanda

Abstract Big data is revolutionising the health care sector by making it easier to analyse large volumes of data. This enables health care providers to monitor individuals or systems in real time. However, the main concern with regard to big data in biomedicine is how to overcome the barriers to using such data for health-related research. The landscape of big data is still evolving and the law has not developed suitable principles for governing access to big data. This paper sketches the fuzzy contours of data ownership and related intellectual property rights to demonstrate that ownership is a concept that is ill-suited for governing rights in big data. The dawn of big data calls for an alternative normative framework. This framework must be capable of reconciling competing societal, individual and industries’ interests in the data with a view to ensuring fair access while minimising legal and ethical risks. Ultimately, the paper proposes a paradigm shift from ownership to custodianship in the governance of access and use of big data, particularly in international health-related research.

Author(s):  
Burkhard Schafer

The paper explores whether legal and ethical concepts that have been used to protect the natural environment can also be leveraged to protect the ‘infosphere’, a neologism used by Luciano Floridi to characterize the totality of the informational environment. We focus, in particular, on the interaction between allocation of (intellectual) property rights and ‘communication duties’, in particular, data breach notification duties. This article is part of the themed issue ‘The ethical impact of data science’.


2020 ◽  
Vol 22 (1) ◽  
pp. 43-51
Author(s):  
Sarah J. Donkers ◽  
Megan C. Kirkland ◽  
Marc Charabati ◽  
Lisa C. Osborne

CME/CNE Information To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org.Activity Available Online: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS).Target Audience: Learning Objectives: Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.Physician Credit: The CMSC designates this enduring material for 1.0 contact hour (none in the area of pharmacology).Nurse Credit: Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has disclosed relationships with Springer Publishing (royalty), Qr8 (receipt of intellectual property rights/patent holder), Biogen (receipt of intellectual property rights/patent holder, speakers' bureau), GW Pharma (consulting fee), and Adamas Pharmaceuticals (contracted research). Laurie Scudder, DNP, NP, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. Sarah J. Donkers, PT, PhD, has disclosed no relevant financial relationships. Megan C. Kirkland, MSc, has disclosed no relevant financial relationships. Marc Charabati, BSc, has disclosed no relevant financial relationships. Lisa C. Osborne, PhD, has disclosed no relevant financial relationships. The peer reviewer for IJMSC has disclosed no relevant financial relationships. The staff at IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Financial relationships for some authors may have changed in the interval between listing these disclosures and publication of the article.Disclosures: Francois Bethoux, MD, Method of Participation: Release Date: February 1, 2020 Valid for Credit Through: February 1, 2021 In order to receive CME/CNE credit, participants must: Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation. There is no fee to participate in this activity. This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC or Delaware Media Group.Disclosure of Unlabeled Use: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.Disclaimer:


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