Data Sharing in Medical Research

Sound Ethics Subject Guide: Data Sharing in Medical Research

In this episode, Sound Ethics: Who Owns Research Data?, Eric M. Meslin, Ph.D., director of the IU Center for Bioethics, and Andrew Vickers, Ph.D., a biostatistician at Memorial Sloan Kettering Cancer Center, discuss Vickers’ New York Times essay questioning the reluctance of some researchers to share their raw data, even after the results have been published.

Academic Publications:

• How to encourage the right behaviour. Nature. 2002 Mar 7;416(6876):1. [Editorial]. PubMedID:11882850 | doi:10.1038/416001b

• Altman DG, Cates C. Authors should make their data available. BMJ. 2001 Nov 3;323(7320):1069-70. [Comment]. PubMedCentralID:11691772 [Free, full text]

• Doyle DJ. Understanding the open access data movement. Can J Anaesth. 2007 Nov;54(11):949-50. [Comment]. PubMedID:17975243 | cja-jca.org

• Eysenbach G, Sa ER. Code of conduct is needed for publishing raw data. BMJ. 2001 Jul 21;323(7305):166. PubMedCentralID:11463695 [Free, full text]

• Fienberg SE. Sharing statistical data in the biomedical and health sciences: ethical, institutional, legal, and professional dimensions. Annu Rev Public Health. 1994;15:1-18. [Review]. PubMedID:8054076 | doi:10.1146/annurev.pu.15.050194.000245

• Hutchon DJ. Publishing raw data and real time statistical analysis on e-journals. BMJ. 2001 Mar 3;322(7285):530. PubMedCentralID:11230070 [Free, full text]

• Kirwan JR. Making original data from clinical studies available for alternative analysis. J Rheumatol. 1997 May;24(5):822-5. [Editorial]. PubMedID:9150066 | Connotea [Excerpt]

• Nagelkerke NJ, Bernsen RM, Rizk DE. Authors should publish their raw data. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Dec;18(12):1387-90. [Editorial]. PubMedID:17876487 | doi:10.1007/s00192-007-0464-z

• Reidpath DD, Allotey PA. Data sharing in medical research: an empirical investigation. Bioethics. 2001 Apr;15(2):125-34. PubMedID:11697377 | doi:10.1111/1467-8519.00220

• Vickers AJ. Whose data set is it anyway? Sharing raw data from randomized trials. Trials. 2006;7:15. [Editorial]. PubMedCentralID:16704733 [Free fulltext]

• Vogeli C, Yucel R, Bendavid E, Jones LM, Anderson MS, et al. Data withholding and the next generation of scientists: results of a national survey. Acad Med. 2006 Feb;81(2):128-36. PubMedID:16436573 | academicmedicine.org [abstract]

News and Other Sources:

• Campbell E. and Blumenthal D. The Selfish Gene: Data Sharing and Withholding in Academic Genetics. Science [Science Careers]. 31 May 2002. ScienceCareers.org

• Data sharing. Wikipedia, The Free Encyclopedia. 16 Feb 2008, 09:24 UTC. Wikimedia Foundation, Inc. 28 Feb 2008. http://en.wikipedia.org/wiki/Data_sharing

• Kaiser J. Plan for Divulging Raw Data Eases Fears. Science. 12 February 1999: Vol. 283. no. 5404, pp. 914 – 915. PubMedID:10075555 | doi:10.1126/science.283.5404.914b

• Marshall E. Epidemiologists Wary of Opening Up Their Data. Science. 6 October 2000: Vol. 290. no. 5489, pp. 28 – 29. doi:10.1126/science.290.5489.28b

• NIH Data Sharing Policy. Office of Extramural Research, NIH. [grants.nih.gov | NOT-OD-03-032]

• Vickers A. Cancer Data? Sorry, Can’t Have It. The New York Times. January 22, 2008. www.nytimes.com

Search the Literature:

• PubMed Search: Access to information

• Google Scholar Search: Data-Sharing and Ethics