Balancing potential risks and benefits of using confidential data
- 10 August 2006
- Vol. 333 (7563) , 349-351
- https://doi.org/10.1136/bmj.333.7563.349
Abstract
Effect of current legislation Changes in the laws on data protection1–3 have had an important effect on training for medical research and on the design, costs, and feasibility of research projects. In many instances, this has improved the ways in which personal data are handled and protected the privacy of patients. There is, however, a general concern that varying interpretations of current legislation are stifling important research.4 Widespread uncertainty among professional bodies, hospital managers, ethics committees, clinicians, medical researchers, and the public may be producing disproportionate obstacles to the use of personal data when there is not genuine risk. In some instances, interpretations of legislation seem to have been driven less by careful consideration of the likelihood of real harm for individuals than by the desire to minimise the risk of criticism for organisations. It needs just a few such decisions to impart an extra twist to the cycle of inefficiency in the use of public money for medical research. Clearly, research should conform to good practice, but it remains appropriate to consider whether over-interpretation of data protection legislation represents another real, albeit difficult to quantify, risk to the public. Credit: SARAH PERKINSKeywords
This publication has 5 references indexed in Scilit:
- Overcoming barriers to recruitment in health researchBMJ, 2006
- Confidentiality of personal health information used for researchBMJ, 2006
- MRC/BHF Heart Protection Study of cholesterol lowering with simvastatin in 20 536 high-risk individuals: a randomised placebocontrolled trialPublished by Elsevier ,2002
- Waist and hip circumferences, and waist-hip ratio in 19 populations of the WHO MONICA ProjectInternational Journal of Obesity, 1999
- Breast cancer and hormonal contraceptives: collaborative reanalysis of individual data on 53 297 women with breast cancer and 100 239 women without breast cancer from 54 epidemiological studiesPublished by Elsevier ,1996