Health-Information Altruists
http://www.100md.com
《新英格兰医药杂志》
To the Editor: Project planners who are seeking to cultivate a network of patients willing to provide their health information to genomic-cohort investigators, as described by Kohane and Altman (Nov. 10 issue),1 cannot afford to ignore how increasing commercialization has complicated the social contract for biomedical research.2 In fact, the very projects in Iceland and Estonia cited by the authors as precedents for the success of health-information altruism have foundered, owing to controversies over the commercial use of personal health records.3,4
In this era of restrictive licensing, privatized medicine, and spiraling health care costs, any call for collective altruism from patients should be coupled with correlative duties to generate public benefit from patient-donated resources. The best way to achieve this goal is not through individual choice alone, as the authors recommend. Rather, as a matter of pragmatism and equity, patients should also have collective representation during the design and management of such projects. Mutually acceptable solutions to contested issues at the public–private interface are likely to be found only through new forms of shared governance. The "charitable-trust model" has been proposed as one possible structure for shared governance, but there may be others.5,6
David E. Winickoff, J.D.
University of California, Berkeley
Berkeley, CA 94720-3312
david_winickoff@nature.berkeley.edu
References
Kohane IS, Altman RB. Health-information altruists -- a potentially critical resource. N Engl J Med 2005;353:2074-2077.
Callahan D. What price better health? Hazards of the research imperative. Berkeley: University of California Press, 2003.
Abbott A. Icelandic database shelved as court judges privacy in peril. Nature 2004;429:118-118.
Burgermeister J. Estonia genome project lives on. In: The Scientist. April 28 2004. (Accessed January 13, 2006, at http://www.the-scientist.com/article/display/22144/.)
Winickoff DE, Winickoff RN. The charitable trust as a model for genomic biobanks. N Engl J Med 2003;349:1180-1184.
Winickoff DE, Neumann L. Towards a social contract for genomics: property and the public in the `biotrust' model. Genomics Soc Policy 2005;1:8-21.
The authors reply: We agree that the impact of commercial use of personal health information should not be ignored. However, our article outlines social interventions to protect against this problem. These recommendations include the adoption of rules to outlaw the linkage of health information to other data resources for reidentification, the creation of protection and operating procedures for data curators, and efforts to give patients control of the use of their own health data. The charitable-trust model is being tried in Estonia, but we are not sure that the U.S. public would make a similar choice. The traditional American trust in individual decision making and market forces makes patient-level control potentially a better fit. Such an option is absolutely consistent with shared-governance schemes, as long as individual patients have the personal option to participate or not.
Isaac S. Kohane, M.D., Ph.D.
Harvard Medical School
Boston, MA 02115
Russ B. Altman, M.D., Ph.D.
Stanford University
Stanford, CA 94305
In this era of restrictive licensing, privatized medicine, and spiraling health care costs, any call for collective altruism from patients should be coupled with correlative duties to generate public benefit from patient-donated resources. The best way to achieve this goal is not through individual choice alone, as the authors recommend. Rather, as a matter of pragmatism and equity, patients should also have collective representation during the design and management of such projects. Mutually acceptable solutions to contested issues at the public–private interface are likely to be found only through new forms of shared governance. The "charitable-trust model" has been proposed as one possible structure for shared governance, but there may be others.5,6
David E. Winickoff, J.D.
University of California, Berkeley
Berkeley, CA 94720-3312
david_winickoff@nature.berkeley.edu
References
Kohane IS, Altman RB. Health-information altruists -- a potentially critical resource. N Engl J Med 2005;353:2074-2077.
Callahan D. What price better health? Hazards of the research imperative. Berkeley: University of California Press, 2003.
Abbott A. Icelandic database shelved as court judges privacy in peril. Nature 2004;429:118-118.
Burgermeister J. Estonia genome project lives on. In: The Scientist. April 28 2004. (Accessed January 13, 2006, at http://www.the-scientist.com/article/display/22144/.)
Winickoff DE, Winickoff RN. The charitable trust as a model for genomic biobanks. N Engl J Med 2003;349:1180-1184.
Winickoff DE, Neumann L. Towards a social contract for genomics: property and the public in the `biotrust' model. Genomics Soc Policy 2005;1:8-21.
The authors reply: We agree that the impact of commercial use of personal health information should not be ignored. However, our article outlines social interventions to protect against this problem. These recommendations include the adoption of rules to outlaw the linkage of health information to other data resources for reidentification, the creation of protection and operating procedures for data curators, and efforts to give patients control of the use of their own health data. The charitable-trust model is being tried in Estonia, but we are not sure that the U.S. public would make a similar choice. The traditional American trust in individual decision making and market forces makes patient-level control potentially a better fit. Such an option is absolutely consistent with shared-governance schemes, as long as individual patients have the personal option to participate or not.
Isaac S. Kohane, M.D., Ph.D.
Harvard Medical School
Boston, MA 02115
Russ B. Altman, M.D., Ph.D.
Stanford University
Stanford, CA 94305