What ethical approaches are used by scientists when sharing health data? An interview study

Area of Science:

• Health data ethics
• Scientific research integrity
• Personal data protection

Background:

• Growing use of health data in research, AI, and wearables raises ethical concerns.
• Need to protect individual rights, freedoms, and personal data in evolving digital environments.
• Focus on ethical approaches in intensive health data exploitation.

Purpose of the Study:

• Identify ethical approaches used by scientists handling personal health data.
• Analyze ethical considerations during health data collection, usage, and sharing.
• Understand scientists' perspectives on ethical challenges in data-driven research.

Main Methods:

• Systematic expert interviews with 12 scientists in Sweden.
• Thematic analysis of interviews to identify ethical values and norms.
• Coding and categorization of expressed ethical approaches.

Main Results:

• Four main ethical approaches identified: consideration of consequences, respect for rights, procedural compliance, and professionalism.
• Scientists' approaches largely aligned with ethical and legal principles.
• Data sharing is valued but challenging, with a perceived lack of practical ethical procedures.

Conclusions:

• Scientists' ethical approaches are generally consistent with established principles.
• There's a recognized need for practical, integrated solutions for ethical data handling.
• Call for a shift from policy discussions to ethics-by-design technological solutions.