September 16, 2014 S.J. Quinney College of Law Associate Dean for Faculty Research and Distinguished Professor of Law Leslie Francis published a white paper in the journal Applied & Translational Genomics.
The paper, titled “Genomic knowledge sharing: A review of the ethical and legal issues,” is available online.
Abstract – The importance of genomic information for care of individual patients and for the development of knowledge about treatment efficacy is becoming increasingly apparent. This information is probabilistic and involves the use of large data sets to increase the likelihood of detecting low frequency events. Duties and rights of patients with respect to this information have been much discussed, including informed consent to the use of individual information, privacy and confidentiality, rights to know or not to know, and individual ownership of information about themselves. But this is only one side of the information equation. On the other side of the equation are duties of information holders: malpractice and duties to warn, responsibilities of data stewardship, intellectual property and ownership, reciprocity, and justice. This article argues that if we take duties of patients to share information seriously, we must also consider duties on the part of information holders about how they protect and use information.