From Rosalind Franklin to Barack Obama: Data Sharing Challenges and Solutions in Genomics and Personalised Medicine

New Bioeth. 2017 Apr;23(1):64-73. doi: 10.1080/20502877.2017.1314883.


The collection, storage and use of genomic and clinical data from patients and healthy individuals is a key component of personalised medicine enterprises such as the Precision Medicine Initiative, the Cancer Moonshot and the 100,000 Genomes Project. In order to maximise the value of this data, it is important to embed a culture within the scientific, medical and patient communities that supports the appropriate sharing of genomic and clinical information. However, this aspiration raises a number of ethical, legal and regulatory challenges that need to be addressed. The Global Alliance for Genomics and Health, a worldwide coalition of researchers, healthcare professionals, patients and industry partners, is developing innovative solutions to support the responsible and effective sharing of genomic and clinical data. This article identifies the challenges that a data sharing culture poses and highlights a series of practical solutions that will benefit patients, researchers and society.

Keywords: big data; bioethics; cancer; data sharing; genomics; personalised medicine.

MeSH terms

  • Genome
  • Genomics*
  • Humans
  • Information Dissemination*
  • Neoplasms / genetics
  • Neoplasms / therapy
  • Precision Medicine*