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October 24, 2019

Improving Molecular Oncology by Making Results Available to Patients

Author Affiliations
  • 1Dana Farber Cancer Institute, Boston, Massachusetts
  • 2City of Hope Comprehensive Cancer Center, Duarte, California
  • 3GO2 Foundation for Lung Cancer, Washington, DC
JAMA Oncol. 2019;5(12):1689-1690. doi:10.1001/jamaoncol.2019.4390

During the past 15 years, genomic analysis for selection of molecularly guided targeted therapy has become standard of care for a wide range of advanced solid tumors including non–small cell lung cancer (NSCLC) (eg, EGFR, ALK, ROS1), colorectal cancer (eg, KRAS, BRAF), breast cancer (eg, PIK3CA), and urothelial carcinoma (eg, FGFR2/3), with emerging targets being studied across a range of cancers. This has led to a growing array of available targeted therapies and a parallel increase in the number and diversity of molecular diagnostic tests to help with treatment selection. Tumor sequencing not only helps to inform which treatments are likely to be effective but also point to which therapies should not be used (eg, EGFR antibodies in KRAS-mutant colon cancer, immune checkpoint inhibitors in EGFR or ALK-positive NSCLC).

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    1 Comment for this article
    More than Ethical, also Legally Protective
    Peggy Zuckerman, MS in ED | Patient Advocate SWOG; SmartPatients, LLC; IKCC; KCCure, et al
    It is clear that there is an ethical obligation to provide the patient with all the data generated about him, and to do so, even if there is not an "actionable" target at hand to manage the patient. Indeed, if medicine had required that every patient survive until there was an actionable target, there would be far fewer of us in general. The very existence of clinical trials speaks to that reality.

    Moreover, in this modern setting of legal liabilities, it is also clear that the failure to provide the patient with this type of data puts
    those providers at great legal risk. The results not given to the patient at one point in time may have great value the following day or after the next ASCO meeting. Without access to this, the patient lacks the necessary information even to discuss these findings, both his personal and the new research findings.

    The failure to provide access to these findings due to the immediate actionability thereby obligates those who have such access to monitor both the patient and the ongoing research for the life of the patient, in the current paternalist approach. That burden to our medical system is unnecessary.

    Do as suggested above and support both the patient and his medical providers all the findings and better yet, educate all (including the physicians) of the impact, immediate and potential, in a meaningful way.