GenoShare: Supporting Privacy-Informed Decisions for Sharing Individual-Level Genetic Data

Area of Science:

• Genomics
• Bioinformatics
• Data Privacy

Background:

• Precision medicine advancements are hindered by privacy concerns surrounding genomic data sharing.
• Existing genomic privacy solutions often compromise data utility, limiting practical adoption.
• Individuals need tools to assess risks before sharing personal genomic data.

Purpose of the Study:

• To introduce GenoShare, a framework for citizens to understand and quantify privacy risks associated with genomic data sharing.
• To enable informed decision-making regarding the disclosure of sensitive genomic information to third parties.
• To simulate genome-based inference attacks and assess potential data disclosure risks.

Main Methods:

• Development of the GenoShare framework.
• Simulation of genome-based inference attacks.
• Quantification of privacy risks related to sharing genomic data.

Main Results:

• GenoShare provides a method for individuals to assess the risk of revealing privacy-sensitive attributes from their genomic data.
• The framework quantifies the potential risks associated with sharing genomic data with untrusted parties.
• GenoShare facilitates informed consent and decision-making processes for genomic data sharing.

Conclusions:

• GenoShare addresses the critical need for balancing genomic data utility with individual privacy protection.
• The framework empowers citizens with knowledge of privacy risks, fostering trust in genomic data sharing initiatives.
• Implementing GenoShare can facilitate the responsible advancement of precision medicine by mitigating privacy concerns.