Data Sharing, Genomics and the Public Good

Erika Check Hayden Geneticists push for global data-sharing 2013 Nature 498: 16-17 points to growing moves to reduce barriers to sharing health data in promoting the public good.Stephen Wilson in his letter to Science article Legal Limits to Data Re-Identification Science 8 February 2013: V339.6120 pp. 647, makes clear - failure to obtain consent when collecting personal health information or re-identification can trigger privacy/data protection issues. In the age of big data, genomic sequencing will be only one of many challenges confronting public health policymakers, industry and researchers. Big data offers the prospect of harnessing structured and unstructured genomic data to promote the public good. For example, mathematical techniques could be applied to trillions of genomic and other health data with the aim of tracking infections in real time, identify chronic disease hotspots, locate individuals in need of emergency care based on GPS. Big data may shape the way we identify and frame population health challenges and generate innovative solutions in the delivery of health care services nationally and locally. However, critics point to privacy concerns and corporate misuse of personal data. It appears that in the age of big data - everything is potentially personal identifiable information, as Narayanan and Shmatikov argue in Myths and fallacies of "Personally Identifiable Information". Best practices in the collection and use of PII may help - but do we need a New Deal. Robert Gelman's article in 2011 The Deidentification Dilemma: A Legislative and Contractual Proposal is worth reading . As Sandy Penland says in Why I’m calling for a New Deal on Data

we require what I have called the New Deal on Data – workable guarantees that the data needed for public goods are readily available while, at the same time, protecting the citizenry. Maintaining protection of personal privacy and freedom is critical to the success of any society.

Data-driven innovation and innovation risk need to be better understood. The article Preparing for Responsible Sharing of Clinical Trial Data suggests that researchers are abreast of the challenges propose some models for data sharing. Jeffrey Skopek's article, Anonymity, the Production of Goods, and Institutional Design raises yet again the thorny question of whether privacy is a fundamental right or a social construct . It is an important question. Any attempt to design systems must address innovation risk and privacy concerns.