Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.

Document Type

Article

Publication Date

6-2019

Identifier

DOI: 10.1053/j.ajkd.2019.01.020; PMCID: PMC6548468

Abstract

DNA is now commonly collected in clinical research either for immediate genomic analyses or stored for future studies. Many genomic studies were previously designed without awareness of the ethical issues that might arise regarding the disclosure of genomic test results. At the start of the Chronic Kidney Disease in Children (CKiD) Cohort Study in 2004, we did not foresee the advent of genomic technology or the associated ethical issues pertaining to genetic research in children. Recent genomic studies and ancillary proposals using genomic technology stimulated the CKiD investigators to reassess the current ethical and policy environment pertaining to genomic testing and results disclosure. We consider the issues pertaining to next generation sequencing and individual results disclosure that may guide current and future research practices.

Journal Title

American journal of kidney diseases : the official journal of the National Kidney Foundation

Volume

73

Issue

6

First Page

837

Last Page

845

MeSH Keywords

Adolescent; Child; Child, Preschool; Female; Forecasting; Genetic Testing; Genomics; Health Policy; High-Throughput Nucleotide Sequencing; Humans; Informed Consent; Male; Pediatrics; Policy Making; Qualitative Research; Renal Insufficiency, Chronic; Research Design; Truth Disclosure; United States

Keywords

DNA collection; Genomics; adolescent; children; chronic kidney disease (CKD); disclosure; ethics; genetic disease; human subjects protections; incidental finding; informed consent; pediatric; review

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