Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.

Sara Huston Katsanis,Mollie A Minear,Azita Sadeghpour,Heidi Cope,Yezmin Perilla,Robert Cook-Deegan,Nicholas Katsanis,Erica E Davis,Misha Angrist

Journal of participatory medicine（2018）

引用 2|浏览14

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摘要

Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants-both partners and traditional-expected to receive all genetic information resulting from the research study.

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关键词

exome sequencing,genome sequencing,participant engagement,partnership,return of results

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