Hostname: page-component-78c5997874-s2hrs Total loading time: 0 Render date: 2024-11-09T13:59:10.009Z Has data issue: false hasContentIssue false

Ethics, Information Technology, and Public Health: New Challenges for the Clinician-Patient Relationship

Published online by Cambridge University Press:  01 January 2021

Extract

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes in conflict.

Moreover, the traditional, prosaic clinical encounter is evolving in an environment increasingly shaped (albeit too slowly according to some) by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored.

Type
Symposium
Copyright
Copyright © American Society of Law, Medicine and Ethics 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Goodman, K. W., Ethics and Evidence-Based Medicine: Fallibility and Responsibility in Clinical Science (New York: Cambridge University Press, 2003).Google Scholar
Garr, D. R., Lackland, D. T., and Wilson, D. B., “Prevention Education and Evaluation in U.S. Medical Schools: A Status Report,” Academic Medicine 75, no. 7 (2000): S14S21.CrossRefGoogle Scholar
Liaison Committee on Medical Education, Functions and Structure of a Medical School: Standards for Accreditation of Medical Education Programs Leading to the M.D. Degree, Chicago, 2008, at 26, available at <http://www.lcme.org/functions2008jun.pdf> (last visited November 30, 2009).+(last+visited+November+30,+2009).>Google Scholar
Friedman, C. P., Altman, R. B., Kohane, I. S., McCormick, K. A., Miller, P. L., Ozbolt, J. G., Shortliffe, E. H., Stormo, G. D., Szczepaniak, M. C., Tuck, D., and Williamson, J., “Training the Next Generation of Informaticians: The Impact of ‘BISTI’ and Bio-informatics – A Report from the American College of Medical Informatics,” Journal of the American Medical Informatics Association 11, no. 3 (2004): 167172.CrossRefGoogle Scholar
Desjardins, K. S., Cook, S. S., Jenkins, M., and Bakken, S., “Effect of an Informatics for Evidence-Based Practice Curriculum on Nursing Informatics Competencies,” International Journal of Medical Informatics 74, nos. 11–12 (2005): 10121020; Gardner, R. M., Overhage, J. M., Steen, E. B., Munger, B. S., Holmes, J. H., Williamson, J. J., Detmer, D. E., and AMIA Board of Directors, “Core Content for the Subspecialty of Clinical Informatics,” Journal of the American Medical Informatics Association 16, no. 2 (2009): 153157; Safran, C., Shabot, M. M., Munger, B. S., Holmes, J. H., Steen, E. B., Lumpkin, J. R., Detmer, D. E., and AMIA Board of Directors, “Program Requirements for Fellowship Education in the Subspecialty of Clinical Informatics,” Journal of the American Medical Informatics Association 16, no. 2 (2009): 158166.CrossRefGoogle Scholar
Freedman, M. A. and Weed, J. A., “The National Vital Statistics System,” in O'Carroll, P. W., Yasnoff, W. A., Ward, M. E., Ripp, L. H., and Martin, E. L., eds., Public Health Informatics and Information Systems (New York: Springer, 2003): 269285, at 271.CrossRefGoogle Scholar
Bourgeois, F. T., Porter, S. C., Valim, C., Jackson, T., Cook, E. F., and Mandl, K. D., “The Value of Patient Self-report for Disease Surveillance,” Journal of the American Medical Informatics Association 14, no. 6 (2007): 765771.CrossRefGoogle Scholar
Lumpkin, J. R., “History and Significance of Information Systems and Public Health,” in O'Carroll, P. W., Yasnoff, W. A., Ward, M. E., Ripp, L. H., and Martin, E. L., eds., Public Health Informatics and Information Systems (New York: Springer, 2003): At 1638.CrossRefGoogle Scholar
Lowrance, W. W., Learning from Experience: Privacy and the Secondary Use of Data in Health Research (London: The Nuffield Trust, 2002).Google Scholar
Hripcsak, G., Soulakis, N. D., Li, L., Morrison, F. P., Lai, A. M., Friedman, C., Calman, N. S., and Mostashari, F., “Syndromic Surveillance Using Ambulatory Electronic Health Records,” Journal of the American Medical Informatics Association 16, no. 3 (2009): 354361.CrossRefGoogle Scholar
Miller, R. A., Schaffner, K. F., and Meisel, A., “Ethical and Legal Issues Related to the Use of Computer Programs in Clinical Medicine,” Annals of Internal Medicine 102, no. 4 (1985): 529536. Compare Miller, R. A., Goodman, K. W., “Ethical Challenges in the Use of Decision-Support Software in Clinical Practice,” in Goodman, K. W., ed., Ethics, Computing and Medicine: Informatics and the Transformation of Health Care (Cambridge and New York: Cambridge University Press, 1998): At 102–115; and Goodman, K. W. and Miller, R. A., “Ethics and Health Informatics: Users, Standards, and Outcomes,” in Shortliffe, E. H., ed., Biomedical Informatics: Computer Applications in Health Care and Biomedicine, 3rd ed. (New York: Springer, 2006): At 379–402.Google Scholar
Szczepaniak, M. C., Goodman, K. W., Wagner, M. W., Hutman, J., and Daswani, S., “Advancing Organizational Integration: Negotiation, Data Use Agreements, Law, and Ethics,” in Wagner, M. W., Moore, A. W., and Aryel, R. M., eds., Handbook of Biosurveillance (Boston: Academic Press, 2006): At 465–480.Google Scholar
Gostin, L. O., “Privacy: Rethinking Health Information Technology and Informed Consent,” in Crowley, M., ed., Connecting American Values with Health Reform (Garrison, NY: The Hastings Center, 2009): At 15–17; Lurie, N. and Fremond, A., “Building Bridges between Medical Care and Public Health,” JAMA 302, no. 1 (2009): 8486; Rodwin, M. A., “The Case for Public Ownership of Patient Data,” JAMA 302, no. 1 (2009): 8688.Google Scholar
Marquard, J. L. and Brennan, P. F., “Crying Wolf: Consumers May Be More Willing to Share Medication Information Than Policymakers Think,” Journal of Health Information Management 23, no. 2 (2009): 2632.Google Scholar
“Public Welfare,” Title 45 Code of Federal Regulations, Pt. 46. 2005 ed., available at <http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm#46.102> (last visited November 30, 2009). Compare Meslin, E. M., “Shifting Paradigms in Health Services Research Ethics: Consent, Privacy, and the Challenges for IRBs,” Journal of General Internal Medicine 21, no. 3 (2006): 279280.CrossRefGoogle Scholar
The CDC adopts a definition of “surveillance” as “the ongoing, systematic collection, analysis, and interpretation of outcome-specific data, closely integrated with the timely dissemination of these data to those responsible for preventing and controlling disease or injury.” See Centers for Disease Control and Prevention, Guidelines for Defining Public Health Research and Public Health Non-Research, 1999, available at <http://www.cdc.gov/od/science/regs/hrpp/researchdefinition.htm> (last visited December 15, 2009); citing Thacker, S. B. and Berkelman, R. L., “Public Health Surveillance in the United States,” Epidemiologic Review 10 (1988): 164190.CrossRefGoogle Scholar
“…[B]ecause your diagnosis and ‘subsequent clinical acts’ have their rational basis in our prior, collective experience with groups of patients, it follows that the strategies and tactics of understanding the distribution and determinants of health and disease in groups (i.e., epidemiology) can be useful to you as a physician.” See Sackett, D. L., Haynes, R. B., Guyatt, G. H., and Tugwell, P., Clinical Epidemiology: A Basic Science for Clinical Medicine, 2nd ed. (Boston: Little, Brown and Co., 1991): at 4, emphasis in original.Google Scholar
Yasnoff, W. A., “Privacy, Confidentiality, and Security of Public Health Information,” in O'Carroll, P. W., Yasnoff, W. A., Ward, M. E., Ripp, L. H., and Martin, E. L., eds., Public Health Informatics and Information Systems (New York: Springer, 2003): At 199–212.Google Scholar
Goodman, K. W., “Ethics, Information Technology and Public Health: Duties and Challenges in Computational Epidemiology,” in O'Carroll, P. W., Yasnoff, W. A., Ward, M. E., Ripp, L. H., and Martin, E. L., eds., Public Health Informatics and Information Systems (New York: Springer, 2003): At 251–266.Google Scholar
Baron, J., Judgment Misguided: Intuition and Error in Public Decision Making (New York: Oxford University Press, 1998).Google Scholar
Johnson, E. J. and Goldstein, D., “Do Defaults Save Lives?” Science 302, no. 5649 (2003): 13381339.CrossRefGoogle Scholar
Moore, D. A., Tetlock, P. E., Tanlu, L., and Bazerman, M. H., “Conflict of Interest and the Case of Auditor Independence: Moral Seduction and Strategic Issue Cycling,” Academy of Management Review 31, no. 1 (2006): 1029.Google Scholar