Paper by Jonathan E. LoTempio Jr et al: “The bankruptcy of 23andMe was an inflection point for the direct-to-consumer genetics market. Although the privacy of consumer data has been highlighted by many as a concern, we discuss another key tension in this case: the corporate enclosure of scientific data that has considerable potential value for biomedical research and public health…
When genomic data are collected through explicit, opt-in consent for the express purpose of contributing to biomedical research, they occupy a category that is not easy to classify. Such data are not public resources in the traditional sense, but neither are they simply private commodities. Their value arises through collective participation and through the invocation of public benefit as a condition of the contribution. As such, the successive owners of such data must be legally required to preserve the public benefits and individual expectations associated with their original collection…(More)”.
