A principled approach to cross-sector genomic data access

Area of Science:

• Genomics
• Bioethics
• Forensic Science

Background:

• Genomic data is increasingly available through direct-to-consumer testing and genealogy services.
• The cross-sector use of genomic health and ancestry data, particularly by law enforcement, presents significant ethical challenges.
• Balancing data accessibility with individual privacy is crucial.

Purpose of the Study:

• To discuss the growing importance and availability of genomic data.
• To examine the ethical implications of cross-sector data utilization, focusing on investigative genetic genealogy.
• To develop an ethical framework for principled genomic data access.

Main Methods:

• Literature review on genomic data significance and utilization.
• Analysis of ethical considerations in cross-sector data sharing.
• Development of a novel ethical framework for genomic data access.

Main Results:

• Genomic data's dual use in health, genealogy, and law enforcement necessitates careful regulation.
• Investigative genetic genealogy highlights the need for clear ethical guidelines.
• The proposed framework addresses privacy and ethical concerns in genomic data access.

Conclusions:

• Genomic data access requires a principled ethical framework to navigate privacy and cross-sector use.
• Regulation is essential to manage the ethical complexities of utilizing genomic and ancestry data for law enforcement.
• The developed framework offers a foundation for responsible genomic data governance.