Ethical Issues in Consumer Informatics and Online Content
This chapter will address ethical issues in consumer informatics and online content, including quality assurance, privacy and security concerns, consent and governance, and the important role consumer information plays in shared decision-making. If privacy concerns have slowed the progress of research, new approaches such as a pool of freely available health and genomic data could accelerate innovation. This chapter will describe the range of ethical perspectives on data sharing and propose a new approach using free and open-source tools to support ethical transactions involving consumers, researchers, and health systems.
KeywordsConsent e-Consent Governance Privacy Information security Informedness Genomic data Dark patterns Data sharing Nothing about me without me
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