Talking Ethics Early in Health Data Public Private Partnerships
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Author / Producer
Date
2024-03
Publication Type
Journal Article
ETH Bibliography
yes
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Altmetric
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Abstract
Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy-in turn raising an important problem in business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network's ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue.
Permanent link
Publication status
published
External links
Editor
Book title
Journal / series
Volume
190 (3)
Pages / Article No.
649 - 659
Publisher
Springer
Event
Edition / version
Methods
Software
Geographic location
Date collected
Date created
Subject
Data sharing; Stakeholders; Ethical issues; Public private partnerships
Organisational unit
09614 - Vayena, Eftychia / Vayena, Eftychia
Notes
Funding
187356 - Digital Health Innovation: a Governance Roadmap for Switzerland (D-GOVmap) (SNF)