Building capacity to guide disclosure of genomic research results in CKiD

点击翻译按钮获取中文摘要

PROJECT SUMMARY This project entitled, “Building Capacity to Guide Disclosure of Genomic Research Results in CKiD”, is specific both to bioethics research and capacity building in bioethics. The Chronic Kidney Disease in Children (CKiD) Study is developing policies to disclose individual genomic research results, yet challenged by uncertainties in being able to provide accurate and valid results to individual participants. Our proposal addresses this challenge by developing informational support for parents about genomic research results in CKiD with acknowledgement of the concerns regarding the analytic validity, clinical validity, and/or utility of these data. A multidisciplinary team including researchers with expertise in genomic research ethics and members of a parent advisory group will work with health communication media experts to produce a series of short videos on concepts related to disclosing genetic research data. The proposal will also develop and administer surveys, based on validated tools, to be used with the videos to assess parent perspectives regarding disclosure of genomic research results in CKiD. We will recruit 150 CKiD parents to participate in the videos and surveys through the existing structure of the CKiD study. The survey data on the informed parent perspectives will guide policy development for CKiD to disclose individual research results to participants and their families.