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Expectations for Genome Sequencing Among Cancer Patients, Family Members

Cancer patients in Japan have high expectations that whole-genome sequencing will help in diagnosing and treating their disease, but they, and others, also have reservations regarding privacy, according to a new study appearing in the Journal of Human Genetics. Researchers from the University of Tokyo surveyed more than 1,2000 cancer patients, nearly 6,000 family members, and almost 3,000 members of the general public about whole-genome sequencing. Out of the three groups, cancer patients had the highest hopes for sequencing: nearly 75 percent expected it to be beneficial in diagnosing their disease, almost 80 percent expected it would to lead to a cure, and just more than 75 percent thought that building a large-scale database would help develop medicine. However, about 60 percent of cancer patients and 60 percent of their family members had concerns about genetic privacy and the possibility of genetic discrimination, as, the researchers note, there are no laws against genetic discrimination in Japan. "As both [cancer patients] and [family members] were highly concerned about the genetic privacy, ensuring transparency and infrastructure for secure access to data are crucial," the researchers add.