{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T14:37:15Z","timestamp":1777905435619,"version":"3.51.4"},"reference-count":26,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2019,12,1]],"date-time":"2019-12-01T00:00:00Z","timestamp":1575158400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The CRISPR Journal"],"published-print":{"date-parts":[[2019,12,1]]},"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.1089\/crispr.2019.0034","type":"journal-article","created":{"date-parts":[[2019,12,20]],"date-time":"2019-12-20T15:29:58Z","timestamp":1576855798000},"page":"441-449","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":16,"title":["Perspectives of Sickle Cell Disease Stakeholders on Heritable Genome Editing"],"prefix":"10.1177","volume":"2","author":[{"given":"Brittany M.","family":"Hollister","sequence":"first","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mariclare C.","family":"Gatter","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Khadijah E.","family":"Abdallah","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alyssa J.","family":"Armsby","sequence":"additional","affiliation":[{"name":"Department of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania."},{"name":"Department of Cardiology, John Radcliffe Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford, United Kingdom; and University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ashley J.","family":"Buscetta","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Yen Ji Julia","family":"Byeon","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kayla E.","family":"Cooper","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stacy","family":"Desine","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anitra","family":"Persaud","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."},{"name":"Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kelly E.","family":"Ormond","sequence":"additional","affiliation":[{"name":"Department of Genetics and University of Pennsylvania, Philadelphia, Pennsylvania."},{"name":"Stanford Center for Biomedical Ethics, Stanford School of Medicine, Stanford University, Stanford, California; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vence L.","family":"Bonham","sequence":"additional","affiliation":[{"name":"Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland; University of Pennsylvania, Philadelphia, Pennsylvania."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2019,12,16]]},"reference":[{"key":"e_1_3_5_2_2","volume-title":"Human Genome Editing: Science, Ethics, and Governance","author":"National Academies of Science, Engineering, and Medicine","year":"2017","unstructured":"National Academies of Science, Engineering, and Medicine. 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