Public and patient involvement in developing a survey on re-consent for pediatric genomic data sharing in Japan: a GRIPP2-LF report
Hiroko Terui-Kohbata, Midori Yamamoto, Tomoyo Takeuchi · 2026
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Description
Terui-Kohbata's team in Tokyo let five lay reviewers rewrite a survey about children's genomic data before fielding it. Japanese teens re-consent at sixteen for new samples, while earlier data stay usable regardless. Four involvement stages structured the public feedback. Every change was logged under the GRIPP2 standard.
83 percent of first-round comments were adopted, then 87 percent in round two. Wording, opt-out notes, and parent-child framing all sharpened. The five disagreed productively on allowed side uses of data. The report ranks among Japan's first ordered accounts of structured patient input.
Catalog record
| CREATOR | Hiroko Terui-Kohbata, Midori Yamamoto, Tomoyo Takeuchi |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 29 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |