The Privacy Imperative v. Emphasizing Sharing
A complex tangle of privacy regulations govern how data with personally identifiable information have to be treated before they can be shared with others. Initiatives such as Data Tags by the Harvard Data Privacy Lab are attempting to make the researcher’s life easier by unraveling these requirements, however, the reality is that the complicatedness is merely swept under the carpet.
There is an emerging school of thought that perhaps we are approaching this difficult and trenchant problem the wrong way. Instead of emphasizing the intricacies of privacy to the citizen from whom the data are being sourced, if alongwith providing a reasonable assurance to protect privacy we were to also communicate the potential benefits of sharing, then the citizen would be more inclined to give consent to sharing.
With support from the Robert Wood Johnson Foundation, and in collaboration with the Institute for Human Genetics and the Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G) at UCSF, the Personal Genome Project at Harvard University, and the Institute of Biomedical Ethics, University of Zürich, we will explore the practical, ethical and legal implications of this approach at a workshop planned for Spring 2015 in Washington DC.
Please use the form below to let us know if you could contribute to the workshop and the topic. Unfortunately, we may not be able to invite all interested applicants.