“The Right Not to Know” in the Era of Genomic Medicine

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  • ゲノム医療時代における「知らないでいる権利」
  • ゲノム イリョウ ジダイ ニ オケル 「 シラナイ デ イル ケンリ 」

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<p>This paper aims to consider the change in the policy of “the right not to know” regarding genetic information in the genomic era after the huge advances in genomics and genome medicine through a literature survey. “the right not to know” was established in the 1990s after being proposed by individuals at-risk for incurable genetic disease. The introduction of the Next Generation Sequencing (NGS) caused dramatic innovation in sequencing technologies, which, in the late 2000s, evoked the debate on the investigator’s and physician’s ethical duties to report Incidental Findings/Secondary Findings (IFs/SFs) to the participants or patients. Another turning point came in the 2010s, when IFs/SFs that were “actionable,” including children’s test results, were recommended to be returned to the participants or patients. The Japanese government is promoting genome medicine, and it is anticipated that not only at-risk family members of people with genetic diseases, but also people without a family history of a specific disease may know the risks of developing various diseases. It is important to reconsider how to guarantee “the right not to know” in the era of genome medicine.</p>

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