Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research

[1]  N. Clemens,et al.  Privacy, consent, and the electronic mental health record: The Person vs. the System. , 2012, Journal of psychiatric practice.

[2]  Laura A. Levit,et al.  Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington, DC: National Academies Press , 2009 .

[3]  F. Collins,et al.  Potential etiologic and functional implications of genome-wide association loci for human diseases and traits , 2009, Proceedings of the National Academy of Sciences.

[4]  P. Dabrock,et al.  Differentiating and Evaluating Common Good and Public Good: Making Implicit Assumptions Explicit in the Contexts of Consent and Duty to Participate , 2012, Public Health Genomics.

[5]  Abigail B Shoben,et al.  Does Consent Bias Research? , 2013, The American journal of bioethics : AJOB.

[6]  Omar Bouhaddou,et al.  The Department of Veterans Affairs, Department of Defense, and Kaiser Permanente Nationwide Health Information Network exchange in San Diego: patient selection, consent, and identity matching. , 2011, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[7]  Melissa C Brouwers,et al.  Written informed consent and selection bias in observational studies using medical records: systematic review , 2009, BMJ : British Medical Journal.

[8]  J. Ioannidis.  The importance of potential studies that have not existed and registration of observational data sets. , 2012, JAMA.

[9]  Robert H. Shelton.  Electronic Consent Channels: Preserving Patient Privacy Without Handcuffing Researchers , 2011, Science Translational Medicine.

[10]  E. Whitley,et al.  Consent and Research Governance in Biobanks: Evidence from Focus Groups with Medical Researchers , 2012, Public Health Genomics.

[11]  J. Ioannidis,et al.  Risk factors and interventions with statistically significant tiny effects. , 2011, International journal of epidemiology.

[12]  Keith Marsolo,et al.  Challenges in creating an opt-in biobank with a registrar-based consent process and a commercial EHR , 2012, J. Am. Medical Informatics Assoc..

[13]  K. Weinfurt,et al.  Developing a Simplified Consent Form for Biobanking , 2010, PloS one.