Personalized Genomic Medicine and the Rhetoric of "Patient Empowerment" - an interdisciplinary seminar
|Contact Name||Kristie Kuczynski|
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"Personalized genomic medicine" (PGM) has gained traction as a goal for translational genomic research, in part because of the claim that PGM will "empower patients" by increasing their personal control over their health care. Yet there is no necessary conceptual connection between the tools of PGM and increased patient power in the clinical setting. In some cases, PGM even seems likely to reduce patients’ control over treatment choices. Our reading of the literature suggests three explanations for why patient empowerment ranks so highly among the cardinal virtues of PGM for those who promote it. It can (1) make a virtue of a clinical necessity, for that part of PGM’s promise that depends on patient behavior rather than medical intervention, (2) invoke a free-standing moral concern about medical paternalism, fueled by the marketing interests of the "consumer genomics" industry, and (3) exploit the public appeal of individual autonomy to generate consumer demand and political support for PGM as a "new paradigm for health care". Since "empowering patients" can also shift health care responsibilities in counterproductive ways for both clinicians and patients, it will be crucial for PGM’s promoters to be clear about which of these functions their appeals to empowerment are meant to play, and for its consumers to weigh the relative value of these functions to their own interests.