Personalized medicine or public health? Bioethics, human rights, and choice

• Autor(a) principal: Annas,George J.
• Data de Publicação: 2014
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: http://scielo.pt/scielo.php?script=sci_arttext&pid=S0870-90252014000200006
• topic: Personalized medicine; Public health; Bioethics; Human rights

The major medical/scientific research project of the past two decades is the human genome project and its suggested clinical applications. The project can usefully be framed as a quest to cure disease, especially cancer, and even to defy mortality. The hero of this quest is the project leader, who currently is trying, almost desperately, to “translate” the science of the genome into public health practice (screening) and the practice of medicine, often termed tailored, precision or “personalized medicine.” In America's dysfunctional and patchwork healthcare system, adding another layer of extremely expensive and (to date) marginally effective screening procedures and genetics-based cancer treatments is a hard sell. Nonetheless, framing the human genome project as a quest for added life can make it seem altogether normal, even natural, and can help rally the public to its support. A second, parallel quest is the public health-political quest for a system that guarantees universal access to healthcare for Americans. The ultimate success of this quest will depend not on any scientific or medical breakthrough, even a genetic one, but on political will. Creating and sustaining political support for universal healthcare access will require, I suggest, the deployment of stories of real Americans whose lives have been made much more miserable by the lack of access to decent healthcare. These two quests are converging in ways that may make them incompatible because of the extreme expense of personalized medicine, and, at least so far, its inability to add more than marginal benefit to the lives of most Americans. Nonetheless, until Americans are more comfortable accepting death, we will continue to fight our mortality with activities we frame as quests, making our dysfunctional healthcare system less and less able to respond to the health needs of the American public.