21 August 2017
Building public trust in sharing health data is essential if patients are to benefit from new technologies such as genomics, according to a paper published in the British Medical Bulletin.
With developments in high-throughput DNA sequencing presenting unrivalled opportunities for faster, accurate diagnosis of thousands of currently undiagnosed rare diseases. Data sharing is critical for safe and effective genomic services, where diagnosis depends on integrating a patient’s genomic and clinical data, and also comparing this with data from unrelated patients with the same or similar conditions. The paper urges that measures are taken to promote sharing health data and build public trust.
PHG Foundation’s Dr Sobia Raza and Alison Hall, who authored the paper Genomic medicine and data sharing, argue for concerted efforts by policy makers to increase understanding among both the public and health professionals of why data sharing is essential to improving healthcare. A lack of consensus is undermining public confidence and trust in the infrastructure, processes and people involved in data collection and processing. This lack of trust threatens the successful integration of genomics into clinical care, as recently called for by the Chief Medical Officer.
The authors urge policy makers to develop appropriate infrastructure and policies to minimize the risks associated with sharing and integrating health data and help allay public concerns around data privacy and protection thus demonstrating ‘trustworthiness’.
The paper sets out the essential elements for harnessing data for genomic medicine, as well identifying current legal and regulatory challenges associated with genomic data sharing,