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Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing.
CRISPR J. 2019 12; 2(6):441-449.CJ

Abstract

Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions.

Authors+Show Affiliations

Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Department of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania. Department of Cardiology, John Radcliffe Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford, United Kingdom; and University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania. Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.Department of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania. Stanford Center for Biomedical Ethics, Stanford School of Medicine, Stanford University, Stanford, California; University of Pennsylvania, Philadelphia, Pennsylvania.Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania.

Pub Type(s)

Journal Article
Research Support, N.I.H., Intramural

Language

eng

PubMed ID

31742431

Citation

Hollister, Brittany M., et al. "Perspectives of Sickle Cell Disease Stakeholders On Heritable Genome Editing." The CRISPR Journal, vol. 2, no. 6, 2019, pp. 441-449.
Hollister BM, Gatter MC, Abdallah KE, et al. Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing. CRISPR J. 2019;2(6):441-449.
Hollister, B. M., Gatter, M. C., Abdallah, K. E., Armsby, A. J., Buscetta, A. J., Byeon, Y. J. J., Cooper, K. E., Desine, S., Persaud, A., Ormond, K. E., & Bonham, V. L. (2019). Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing. The CRISPR Journal, 2(6), 441-449. https://doi.org/10.1089/crispr.2019.0034
Hollister BM, et al. Perspectives of Sickle Cell Disease Stakeholders On Heritable Genome Editing. CRISPR J. 2019;2(6):441-449. PubMed PMID: 31742431.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing. AU - Hollister,Brittany M, AU - Gatter,Mariclare C, AU - Abdallah,Khadijah E, AU - Armsby,Alyssa J, AU - Buscetta,Ashley J, AU - Byeon,Yen Ji Julia, AU - Cooper,Kayla E, AU - Desine,Stacy, AU - Persaud,Anitra, AU - Ormond,Kelly E, AU - Bonham,Vence L, Y1 - 2019/11/19/ PY - 2019/11/20/pubmed PY - 2020/7/21/medline PY - 2019/11/20/entrez SP - 441 EP - 449 JF - The CRISPR journal JO - CRISPR J VL - 2 IS - 6 N2 - Advances in CRISPR technology and the announcement of the first gene-edited babies have sparked a global dialogue about the future of heritable genome editing (HGE). There has been an international call for public input to inform a substantive debate about benefits and risks of HGE. This study investigates the views of the sickle cell disease (SCD) community. We utilized a mixed-methods approach to examine SCD stakeholders' views in the United States. We found SCD stakeholders hold a nuanced view of HGE. Assuming the technology is shown to be safe and effective, they are just as supportive of HGE as genetics professionals, but more supportive than the general public. However, they are also concerned about the potential implications of HGE, despite this support. As discourse surrounding HGE advances, it is crucial to engage disease communities and other key stakeholders whose lives could be altered by these interventions. SN - 2573-1602 UR - https://www.unboundmedicine.com/medline/citation/31742431/Perspectives_of_Sickle_Cell_Disease_Stakeholders_on_Heritable_Genome_Editing_ L2 - https://www.liebertpub.com/doi/full/10.1089/crispr.2019.0034?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub=pubmed DB - PRIME DP - Unbound Medicine ER -