Session Details

The field of gene and cell therapy is entering a new phase with a rapidly growing portfolio of one-time interventions that are life-long and potentially curative, but unknowns remain. Patients face the question of whether to undergo a currently available treatment with long-term efficacy that is uncertain, even as less effective, but also less invasive and permanent therapies may be available. And undergoing a therapy now may preclude access to potentially more effective therapies in the future. In short, patients are faced with the question of whether and how to participate in what is, in effect, an ongoing experiment.  Given the extraordinary promise of emerging gene therapies, there may be an inclination—amongst both patients and members of the gene and cell therapy community— to believe too readily what could prove to be overpromises of cure. What are the responsibilities of the field in the face of such uncertainty? What burdens and responsibilities can reasonably be placed on patients, and with what implications for the commitment to respect for persons and approaches to informed consent? What social priorities, values, and conceptions of justice should inform these judgments?