Just data? Solidarity and justice in data-driven medicine

Area of Science:

• Bioethics
• Medical Informatics
• Health Policy

Background:

• Data-driven medicine utilizes personal health data for research and clinical advancements.
• The increasing use of big data and artificial intelligence presents novel ethical challenges.
• Existing frameworks may not adequately address the tension between collective good and individual rights.

Purpose of the Study:

• To identify the normative challenges posed by data-driven medicine.
• To explore the ethical implications of harnessing personal health data.
• To propose solutions for ethical reflection in data-driven healthcare.

Main Methods:

• Philosophical analysis of ethical principles (the good vs. the right).
• Examination of current trends in big data and artificial intelligence in medicine.
• Development of recommendations for ethical governance.

Main Results:

• Harnessing personal health data is beneficial for medical progress (the good).
• Data sharing risks individual rights, leading to injustice and impacting self-determination.
• A tension exists between the benefits of data use and potential rights infringements.

Conclusions:

• Ethical data-driven medicine requires managing information flow controllability.
• Technical infrastructures supporting controllability are essential.
• A governance paradigm shift towards output-orientation is necessary for ethical data use.