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

American Journal of Bioethics

Volumn 13, Issue 4, 2013, Pages 40-42

  Ioannidis, John P A ^a  

^a STANFORD UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; EPIDEMIOLOGY; ETHICS; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MEDICAL RESEARCH; PERSONAL AUTONOMY; RESEARCH SUBJECT;

BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; HUMANS; INFORMED CONSENT; PERSONAL AUTONOMY; RESEARCH SUBJECTS; SELECTION BIAS;

EID: 84875944017     PISSN: 15265161     EISSN: 15360075     Source Type: Journal    
DOI: 10.1080/15265161.2013.768864     Document Type: Article

References (13)

1. Beskow, L. M., Friedman, J. Y.Hardy, N. C. 2010. Developing a simplified consent form for biobanking. PLoS One, 5 e13302.
2. Bialobrzeski, A., Ried, J. and Dabrock, P. 2012. Differentiating and evaluating common good and public good: Making implicit assumptions explicit in the contexts of consent and duty to participate. Public Health Genomics, 15: 285-292.
3. Bouhaddou, O., Bennett, J.Cromwell, T. 2011. 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. AMIA Annual Symposium Proceedings, 2011: 135-143.
4. Clemens, N. A. 2012. Privacy, consent, and the electronic mental health record: The person vs. the system. Journal of Psychiatric Practice, 18: 46-50.
5. Hindorff, L. A., Sethupathy, P.Junkins, H. A. 2009. Potential etiologic and functional implicaitons of genome-wide association loci for human diseases and traits. Proceedings of the National Academy of Sciences USA, 106: 9362-9367.
6. Institute of Medicine. 2009. Beyond the HIPAA Privacy Rule: Enhancing privacy, improving health through research., Washington, DC: National Academies Press.
7. Ioannidis, J. P. 2012. The importance of potential studies that have not existed and registration of observational datasets. Journal of the American Medical Association, 308: 575-576.
8. Kho, M. E., Duffett, M.Willison, D. J. 2009. Written informed consent and selection bias in observational studies using medical records: Systematic review. British Medical Journal, 338: b866
9. Marsolo, K., Corsmo, J.Barnes, M. G. 2012. Challenges in creating an opt-in biobank with a registrar-based consent process and a commercial EHR. Journal of the American Medical Informatics Association, 19: 1115-1118.
10. Rothstein, M. A. and Shoben, A. B. 2013. Does consent bias research?. American Journal of Bioethics, 13(4): 27-37.
11. Shelton, R. H. 2011. Electronic consent channels: Preserving patient privacy without handcuffing researchers. Science Translational Medicine, 3: 69 cm4.
12. Siontis, G. C. and Ioannidis, J. P. 2011. Risk factors and interventions with statistically significant tiny effects. International Journal of Epidemiology, 40: 1292-307.
13. Whitley, E. A., Kanellopoulou, N. and Kaye, J. 2012. Consent and research governance in biobanks: Evidence from focus groups with medical researchers. Public Health Genomics, 15: 232-242.