What are patient perspectives on privacy and trust in digital genomic tools? A qualitative study

TL;DR

This study explores how patients feel about privacy and trust when using digital tools for genomic services.

Contribution

The study provides new insights into patient perspectives on privacy and trust in digital genomic tools.

Findings

Participants were willing to use digital platforms for storing genomic personal health information.

Patients valued transparency about security measures and who would access their data.

The perceived benefits of digital genomic services were seen as outweighing the risks.

Abstract

Digital tools have emerged as a promising solution to increase the efficiency and capacity of genomic services. However, accessing information through internet‐based applications raises concerns about privacy and security risks. As patient‐facing digital tools are developed for genomic medicine, it is vital to understand and incorporate patients' perspectives on digital privacy and security. A qualitative study was conducted using semi‐structured interviews and interpretive description. Thirty participants who previously received genetic testing for themselves (n = 17) or their child (n = 13) were interviewed (n = 20 females, n = 15 above 50 years old). Participants were willing to store and access genomics personal health information (PHI) in a patient‐facing digital platform. The main benefit identified by participants was the ability to access and control their own PHI. Participants expressed that the benefits of digital genomics services, such as patient empowerment and personalized care, outweighed the perceived risks, such as potential data leaks. In order to minimize risks, participants emphasized the importance of transparency about the security measures in place and who would have access to their PHI. These findings inform the design of digital genomic platforms to enhance patients' sense of security, which is critical for the uptake and usage of any platform.

Figures