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Ethics is a philosophical study of moral actions. Ethics attempts to determine what is valuable for individuals and society. It examines the rational justification of moral judgments and analyzes what is morally just, fair, and right. Bioethics is a sub-discipline of applied ethics that analyzes the philosophical, social, and legal issues in life sciences and medicine. Ethical theories serve as a foundation for decision-making and represent the viewpoints from which people seek direction. They...
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Updated: Mar 21, 2026

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Governance Through Privacy, Fairness, and Respect for Individuals.

Dixie B Baker1, Jane Kaye2, Sharon F Terry3

  • 1Martin, Blanck & Associates.

EGEMS (Washington, DC)
|May 4, 2016
PubMed
Summary
This summary is machine-generated.

Individuals should govern their personal data, with Fair Information Practices Principles (FIPPs) enabling secure data sharing and use. Privacy-enhancing technologies and consumer engagement are key to reducing risks and building trust.

Keywords:
Participant governancehealth information technologypatient involvementprivacy

Related Experiment Videos

Last Updated: Mar 21, 2026

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
14:32

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

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Area of Science:

  • Health Informatics
  • Data Governance
  • Bioethics

Background:

  • Individuals possess a moral right to govern their personal data, encompassing privacy and autonomy.
  • The Fair Information Practices Principles (FIPPs) provide a foundational framework for data governance.
  • Privacy-enhancing technologies can facilitate the lawful and ethical use of personal data.

Purpose of the Study:

  • To explore the governance of individual personal data.
  • To examine the role of Fair Information Practices Principles (FIPPs) in data governance.
  • To discuss strategies for reducing privacy and health risks through enhanced data management.

Main Methods:

  • Review of existing data governance frameworks, including the HIPAA Privacy Rule.
  • Analysis of the eight Fair Information Practices Principles (FIPPs) and their implementation.
  • Discussion of consumer engagement and trust-building strategies in data management.

Main Results:

  • Current governance models, like HIPAA, offer limited, often immutable choices for individuals regarding their health data.
  • Trust is paramount; failure to maintain it can lead to data access refusal.
  • The FIPPs offer a robust framework for data sharing and use, fostering trust and avoiding surprises.

Conclusions:

  • Individuals' control over their health and genomic data is expected and crucial for trust.
  • Granular and dynamic choices, alongside transparency and consumer engagement, are essential for effective data governance.
  • The FIPPs provide a versatile approach to engender trust and mitigate risks, potentially reducing the need for explicit consent in all cases.