Digital Policy Regulation and Governance · 2019 · 80 citations · 34 references
ComputingHealth InformaticsHealth PolicyArtificial IntelligenceHealth Information GovernanceMachine LearningArtificial Intelligence GovernanceArtificial Intelligence PolicyData GovernanceData PrivacyHealth Information EthicsHealth Information PolicyHealth Ai GovernanceHealth Data EthicsInformed ConsentMachine Learning EthicsPersonal Health Information ManagementPersonalized Medicine ImplementationPrivacyProtected Health Information (Phi)
Health data are increasingly used to address societal concerns such as system improvement and personalized medicine, and this is the first paper to focus on governance of such data in the context of AI and machine learning. The paper aims to assess the growing challenges of governing personal health information for AI, to promote stakeholder debate and informed critique, and to guide the development of AI that serves societal good while mitigating privacy and security risks. Through a conceptual analysis, the authors discuss privacy and equity risks, propose potential solutions, and highlight the scale and opacity of PHI data consumed by deep learning algorithms as novel governance challenges. They argue that machine learning’s characteristics will overwhelm current privacy regulation and informed consent, necessitating enhanced governance techniques and tools to preserve individuals’ autonomy over their PHI.
Purpose This paper aims to assess the increasing challenges to governing the personal health information (PHI) essential for advancing artificial intelligence (AI) machine learning innovations in health care. Risks to privacy and justice/equity are discussed, along with potential solutions. Design/methodology/approach This conceptual paper highlights the scale and scope of PHI data consumed by deep learning algorithms and their opacity as novel challenges to health data governance. Findings This paper argues that these characteristics of machine learning will overwhelm existing data governance approaches such as privacy regulation and informed consent. Enhanced governance techniques and tools will be required to help preserve the autonomy and rights of individuals to control their PHI. Debate among all stakeholders and informed critique of how, and for whom, PHI-fueled health AI are developed and deployed are needed to channel these innovations in societally beneficial directions. Social implications Health data may be used to address pressing societal concerns, such as operational and system-level improvement, and innovations such as personalized medicine. This paper informs work seeking to harness these resources for societal good amidst many competing value claims and substantial risks for privacy and security. Originality/value This is the first paper focusing on health data governance in relation to AI/machine learning.
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