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8 - Better Practice and Processes

from Part III - Practice and Process of Decision Making

Published online by Cambridge University Press:  02 June 2022

Carolyn Adams
Affiliation:
Macquarie University Law School
Judy Allen
Affiliation:
University of Western Australia, Perth
Felicity Flack
Affiliation:
University of Western Australia, Perth
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Summary

Chapter 8 concludes the book by proposing ways to improve decision-making in relation to sharing linked data for research. It considers improvements in a number of areas: the decision-making framework of interests, values, and rights; the decision-making criteria and conditions; the decision makers who are best placed to make each decision; and the decision-making process. The chapter sets out the interests, values and rights that should frame decisions in this sphere, not all of which are currently represented in decision-making frameworks. It provides a list of decision-making criteria and considerations that should be taken into consideration by the relevant decision makers. The chapter distinguishes between ethical decisions, which should be made by ethics committees and governance decisions, which should be made data custodians. Finally, the chapter makes recommendations for a decision-making process that will be efficient, transparent, accountable and collaborative. This process is designed to lead to better decisions and to ensure that both the decision-making process and the decisions themselves develop and sustain the social licence needed to support the important enterprise of research using linked data.

Type
Chapter
Information
Sharing Linked Data for Health Research
Toward Better Decision Making
, pp. 206 - 240
Publisher: Cambridge University Press
Print publication year: 2022

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