Justice in CRISPR/Cas9 Research and Clinical Applications

Abstract

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Ethical considerations of genetic and genomic testing in pediatric oncology: A narrative review

“…[59][60][61] Research campaigns, including the All of Us program through the National Institutes of Health, have moved the needle slightly toward improvement of the diversity of representation, but much more work is necessary in this area. 62,63 The term VUS reflects uncertainty in clinical significance at the time of classification; with additional data in relevant populations, these variants may later be reclassified. Whereas all recognize that classification may evolve, there is ongoing debate about how often sequencing data should be re-analyzed.…”

“…149 However, these approaches bring unique ethical concerns about long-term safety, costs, and equitable access. 63,150,151 Together, these technologies underscore the need for ongoing ethical, clinical, and policy evaluation before widespread integration into pediatric care.…”

The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease

“…As genome editing continues to push the frontiers of gene therapy, ethically robust clinical trials must be designed to be attentive to the voices of SCD stakeholders on what they need to know about genome editing. This will allow informed decisions to be made when considering participation in genome editing clinical trials (Hildebrandt and Marron 2018). Biotechnology companies, researchers, and clinicians must continue to build partnerships with SCD stakeholders and advocates within the community in order to promote equitable access to these new curative and life-changing technologies.…”

CRISPR/Cas9 systems: Delivery technologies and biomedical applications

“…The translation of CRISPR/Cas9 towards in vivo gene editing presents significant challenges that need to be tackled, including concerns regarding specificity, safety, and efficient delivery. Additionally, research studies have raised apprehensions about the promotion of CRISPR/Cas9 applications, touching upon aspects such as safety, ethics, social fairness, and the risks associated with transgenic manipulation [207] , [208] , [209] , [210] . Consequently, it is crucial to establish a comprehensive legal framework that ensures the secure and equitable utilization of gene editing technology.…”