The Joshua Hardy Case: Lessons Yet to Learn

When you have few options, clinical trials often seem like the best hope, but experimental treatments often offer little hope of therapeutic benefit.

MSU Bioethics

Bioethics-in-the-News-logo This post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

Earlier this month, major news outlets reported the story of 7-year-old Josh Hardy, a current end-stage cancer patient at St. Jude Children’s Research Hospital. Hardy has faced and overcome cancer four times after first being diagnosed with rhabdoid tumors of his kidneys when he was only nine months old. After treatment for his kidney cancer, he relapsed, and cancer was again found first in his thalamus and then in his lung. In November 2013, Josh was diagnosed with myelodysplastic syndrome and required a bone marrow transplant. The weakening of his immune system caused him to come down with a particularly vicious case of adenovirus, and current antivirals have failed to control that infection. After approved drugs failed, Hardy’s doctors suggested that the experimental agent brincidofovir might offer the…

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About ethicsbeyondcompliance

I hold a PhD in medical humanities with an major emphasis in ethics. I began teaching college-level ethics in 2000.
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2 Responses to The Joshua Hardy Case: Lessons Yet to Learn

  1. John H Noble Jr says:

    Would that the lofty ideals and standards of science were actually implemented in clinical trials! The “therapeutic misperception” is actively used by researchers in recruiting and retaining human research subjects . . . it is not something beyond control that simply happens. Jill A. Fisher’s book, Medical Research for Hire: The Political Economy of Pharmaceutical Clinical Trials (Rutgers University Press, 2009) documents actual practice. Single case studies, as poignant as Josh Hardy’s story, do not lend themselves well to formulating public policy. What is needed on the basis of a large literature relating to abuses is the reform and strict oversight of the process of obtaining the informed consent of patients or their surrogates. The very difficult to read and understand written Informed consent forms that patients or surrogates sign serve to protect researchers and their organizations and sponsors against legal liability. How many of such consent spell out and put a number on the infinitesimally small chance that a patient will actually derive a personal benefit from participation in the research?! The “therapeutic misperception” takes root on the basis of misleading or false information.

    • Yes, sometimes people are willfully misled and others are misled by the discomfort of doctors when discussing hopeless situations. I’ve heard doctors lament that patients subject themselves to clinical trials rather than accepting their bad prognosis while admitting they told them the trial was either the “best” or “only” option for treatment without adding that the trial would not offer any benefit.

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