domingo, 24 de septiembre de 2017

Genomic medicine and data sharing. - PubMed - NCBI

Genomic medicine and data sharing. - PubMed - NCBI



 2017 Sep 1;123(1):35-45. doi: 10.1093/bmb/ldx024.

Genomic medicine and data sharing.

Abstract

INTRODUCTION:

Effective 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 DATA:

Original papers, reviews, guidelines, policy papers and web-resources.

AREAS OF AGREEMENT:

Data 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 CONTROVERSY:

There 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 POINTS:

Ongoing 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 RESEARCH:

Mechanisms to improve public trust.

KEYWORDS:

clinical care; data sharing; genomics; policy

PMID:
 
28910995
 
DOI:
 
10.1093/bmb/ldx024

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