Genomic medicine and data sharing

AbstractIntroductionEffective data sharing does not occur in the UK despite being essential for the delivery of high-quality genomic services to patients across clinical specialities and to optimize advances in genomic medicine.Sources of dataOriginal papers, reviews, guidelines, policy papers and web-resources.Areas of agreementData sharing for genomic medicine requires appropriate infrastructure and policies, together with acceptance by health professionals and the public of the necessity of data sharing for clinical care.Areas of controversyThere is ongoing debate around the different technical approaches and safeguards that could be used to facilitate data sharing while minimizing the risks to individuals of identification. Lack of consensus undermines trust and confidence.Growing pointsOngoing policy developments around genomics and health data create opportunities to ensure systems and policies are in place to support proportionate, effective and safeguarded data sharing.Areas timely for developing researchMechanisms to improve public trust.
Source: British Medical Bulletin - Category: General Medicine Source Type: research