Patient Participation and Empowerment in Precision Medicine

Area of Science:

• Genomics
• Bioethics
• Health Informatics

Background:

• Precision medicine stratifies patients using genetic and molecular data.
• Large databases of patient-volunteered information are crucial for this stratification.
• Incentives for data donation include patient partnerships and empowerment.

Purpose of the Study:

• To examine the nature of patient participation in precision medicine research.
• To evaluate the extent to which this participation is truly empowering for patients.

Main Methods:

• Conceptual analysis of patient roles in precision medicine.
• Examination of factors influencing patient empowerment in this context.

Main Results:

• Patient participation is characterized as contributory rather than collaborative.
• Collaboration requires shared values, decision-making power, and benefit, which are often lacking.
• Empowerment is significantly hindered by several factors.

Conclusions:

• Patient participation in precision medicine research is primarily contributory, falling short of genuine collaboration.
• Factors limiting empowerment include the type of participation, data actionability, genetic literacy, drug costs, and informed consent challenges.