A roadmap for restoring trust in Big Data

Mark Lawler et al in the Lancet: “The fallout from the Cambridge Analytica–Facebook scandal marks a significant inflection point in the public’s trust concerning Big Data. The health-science community must use this crisis-in-confidence to redouble its commitment to talk openly and transparently about benefits and risks and to act decisively to deliver robust effective governance frameworks, under which personal health data can be responsibly used. Activities such as the Innovative Medicines Initiative’s Big Data for Better Outcomes emphasise how a more granular data-driven understanding of human diseases including cancer could underpin innovative therapeutic intervention.
 Health Data Research UK is developing national research expertise and infrastructure to maximise the value of health data science for the National Health Service and ultimately British citizens.
Comprehensive data analytics are crucial to national programmes such as the US Cancer Moonshot, the UK’s 100 000 Genomes project, and other national genomics programmes. Cancer Core Europe, a research partnership between seven leading European oncology centres, has personal data sharing at its core. The Global Alliance for Genomics and Health recently highlighted the need for a global cancer knowledge network to drive evidence-based solutions for a disease that kills more than 8·7 million citizens annually worldwide. These activities risk being fatally undermined by the recent data-harvesting controversy.
We need to restore the public’s trust in data science and emphasise its positive contribution in addressing global health and societal challenges. An opportunity to affirm the value of data science in Europe was afforded by Digital Day 2018, which took place on April 10, 2018, in Brussels, and where European Health Ministers signed a declaration of support to link existing or future genomic databanks across the EU, through the Million European Genomes Alliance.
So how do we address evolving challenges in analysis, sharing, and storage of information, ensure transparency and confidentiality, and restore public trust? We must articulate a clear Social Contract, where citizens (as data donors) are at the heart of decision-making. We need to demonstrate integrity, honesty, and transparency as to what happens to data and what level of control people can, or cannot, expect. We must embed ethical rigour in all our data-driven processes. The Framework for Responsible Sharing of Genomic and Health Related Data represents a practical global approach, promoting effective and ethical sharing and use of research or patient data, while safeguarding individual privacy through secure and accountable data transfer…(More)”.