Biobanks and Individual Health Related Findings: from an Obstacle to an Incentive

Area of Science:

• Biobanking and Health Informatics
• Genetics and Personalized Medicine
• Bioethics and Governance

Background:

• European biobanks face challenges in funding and collection utilization, hindering their objectives.
• Commercial direct-to-consumer genetic testing (DTC GT) companies offer a model for biobank management.
• Returning individual health-related findings (IHRF) is an emerging strategy for biobank sustainability.

Purpose of the Study:

• To explore the dual role of IHRF in biobank management and participant engagement.
• To analyze diverse IHRF policies and their ethical implications.
• To examine the influence of personal autonomy on consent for IHRF.

Main Methods:

• Literature review of biobanking management strategies.
• Analysis of IHRF policies in non-profit and commercial biobanks.
• Ethical framework analysis of consent and autonomy in IHRF return.

Main Results:

• IHRF can enhance biobank participant value and improve governance.
• Different approaches to IHRF return exist, each with unique ethical considerations.
• Personal autonomy significantly shapes consent policies for IHRF.

Conclusions:

• Implementing IHRF policies offers a viable strategy for biobank sustainability and participant benefit.
• Careful consideration of ethical issues, particularly concerning autonomy and consent, is crucial for IHRF policies.
• Biobanks can learn from DTC GT models to optimize operations and engagement through IHRF.