Martijn Lolkema et al published an intriguing review article in the May 20, 2013 edition of the Journal of Clinical Oncology entitled "Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology".
The following section of the article piqued the interest of the LIBERTARIAN BIOETHICS BLOGger: "The debate on whether to reveal genetic research results to study participants has been dynamic, and various opposing viewpoints have been expressed … . However, the extreme positions from nondisclosure to full disclosure are seldom defended. At one end of the spectrum, full disclosure is considered by the majority of commentators to be undesirable and nonsensical at best, because it suggests disclosure of all raw sequencing data … ." So, the authors claim that full disclosure of patient information to … wait for it … patients is an "extreme" position. Wut? They then commit the logical fallacy of appeal to authority by referring to the opinions of "the majority of commentators". They finally provide an opinion rather than an actual argument, claiming that full disclosure is absurd because patients would receive raw sequencing data. Wut? I assume they mean patients will be unable to interpret the raw sequencing data so it is silly to provide such information; using this logic, however, the typical patient should never be given any raw data (blood test results, discs containing radiologic images, etc.) because the typical patient also is unable to interpret those results.
This article is not a complete loss, though, for the authors ultimately recommend a "tiered consent" process, whereby physician-investigators ask … wait for it … the patient about which genetic information, if any, the patient wants "returned".
The following section of the article piqued the interest of the LIBERTARIAN BIOETHICS BLOGger: "The debate on whether to reveal genetic research results to study participants has been dynamic, and various opposing viewpoints have been expressed … . However, the extreme positions from nondisclosure to full disclosure are seldom defended. At one end of the spectrum, full disclosure is considered by the majority of commentators to be undesirable and nonsensical at best, because it suggests disclosure of all raw sequencing data … ." So, the authors claim that full disclosure of patient information to … wait for it … patients is an "extreme" position. Wut? They then commit the logical fallacy of appeal to authority by referring to the opinions of "the majority of commentators". They finally provide an opinion rather than an actual argument, claiming that full disclosure is absurd because patients would receive raw sequencing data. Wut? I assume they mean patients will be unable to interpret the raw sequencing data so it is silly to provide such information; using this logic, however, the typical patient should never be given any raw data (blood test results, discs containing radiologic images, etc.) because the typical patient also is unable to interpret those results.
This article is not a complete loss, though, for the authors ultimately recommend a "tiered consent" process, whereby physician-investigators ask … wait for it … the patient about which genetic information, if any, the patient wants "returned".
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