
There are bioethical, institutional, economic, legal, and cultural obstacles to creating the robust-precompetitive-data resource that will be required to advance the vision of "precision medicine," the ability to use molecular data to target therapies to patients for whom they offer the most benefit at the least risk. Creation of such an "information commons" was the central recommendation of the 2011 report Toward Precision Medicine issued by a committee of the National Research Council of the USA (Committee on a Framework for Development of a New Taxonomy of Disease; National Research Council. Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease. 2011). In this commentary, I review the rationale for creating an information commons and the obstacles to doing so; then, I endorse a path forward based on the dynamic consent of research subjects interacting with researchers through trusted mediators. I assert that the advantages of the proposed system overwhelm alternative ways of handling data on the phenotypes, genotypes, and environmental exposures of individual humans; hence, I argue that its creation should be the central policy objective of early efforts to make precision medicine a reality.
Genome, Human, R, Human Genetics, QH426-470, Opinion Article, Phenotype, Privacy, Genetics, Medicine, Humans, Precision Medicine, Information Technology, Delivery of Health Care
Genome, Human, R, Human Genetics, QH426-470, Opinion Article, Phenotype, Privacy, Genetics, Medicine, Humans, Precision Medicine, Information Technology, Delivery of Health Care
| citations This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically). | 9 | |
| popularity This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network. | Top 10% | |
| influence This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically). | Average | |
| impulse This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network. | Average |
