{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,8]],"date-time":"2026-05-08T14:10:39Z","timestamp":1778249439386,"version":"3.51.4"},"reference-count":42,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,5,6]],"date-time":"2026-05-06T00:00:00Z","timestamp":1778025600000},"content-version":"vor","delay-in-days":5,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Hastings Center Report"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>\n                    <jats:italic>In December 2023, the U.S. Food and Drug Administration approved gene\u2010editing therapies as sickle cell disease treatments. Such approvals for gene\u2010editing not only mark radical scientific innovations for populations living with sickle cell disease (SCD) across the United States but also generate an expectation of a potential cure\u2014the end or eradication of an illness and its effects. This essay, however, cautions against framing gene\u2010editing therapy as a \u201ccure\u201d for SCD. Our argument illustrates that, even if gene editing is proven to permanently normalize the hematologic function of the body, there are other painful aspects of SCD that gene editing is unable to transform. Scientific researchers and health care practitioners could benefit from further bioethical consideration of the effects of using curative language with regards to SCD. The curative framing can easily generate misunderstandings in patient\u2010provider communication and elicit unrealistic expectations. Raising awareness about the importance of how gene\u2010editing therapies for SCD are described and about the need to discuss their limitations can prevent further harm<\/jats:italic>\n                    .\n                  <\/jats:p>","DOI":"10.1002\/hast.70033","type":"journal-article","created":{"date-parts":[[2026,5,6]],"date-time":"2026-05-06T15:26:12Z","timestamp":1778081172000},"page":"9-14","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Transformed but Not Cured: The Ethics of Describing Gene\u2010Editing Therapy for Sickle Cell Disease"],"prefix":"10.1002","volume":"56","author":[{"given":"Jada","family":"Wiggleton\u2010Little","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shameka Poetry","family":"Thomas","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristin","family":"Walters","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Consuela","family":"Albright","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2026,5,6]]},"reference":[{"key":"e_1_2_9_1_1","volume-title":"Sickle Cell: \u2018The revolutionary gene-editing treatment that gave me new life,\u2019","author":"Gallagher J.","year":"2022"},{"key":"e_1_2_9_2_1","unstructured":"L.Ungar \u201cGene Therapy Offers New Hope for Sickle Cell Disease Cure \u201dLos Angeles Times December 3 2023."},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.16437"},{"key":"e_1_2_9_4_1","article-title":"Genome Editing for Sickle Cell Disease: Still Time to Correct?","volume":"11","author":"Ceglie G.","year":"2023","journal-title":"Frontier Pediatric"},{"key":"e_1_2_9_5_1","unstructured":"TisdaleandAbraham \u201cCurative Options for Sickle Cell Disease.\u201d"},{"key":"e_1_2_9_6_1","unstructured":"Ibid."},{"key":"e_1_2_9_7_1","unstructured":"\u201cCasgevy \u201d Vertex accessed September 9 2025 https:\/\/www.casgevy.com\/sickle-cell-disease?gclsrc=aw.ds&gad_source=1&gad_campaignid=21375756702&gbraid=0AAAAAp3T6FGBRMxbCi9Tx0V3Ji1NRPEyN&gclid=Cj0KCQjw_L_FBhDmARIsAItqgt4t2X4xbr1TDOzo1yDxvH588U191dSXie0RsDotBNAFceQkngEBTtsaAvE1EALw_wcB."},{"key":"e_1_2_9_8_1","unstructured":"Ibid."},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2024-198475"},{"key":"e_1_2_9_10_1","unstructured":"\u201cLyfgenia \u201d Bluebird Bio accessed September 9 2025 https:\/\/www.lyfgenia.com."},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp2301143"},{"key":"e_1_2_9_12_1","unstructured":"CJ is an alias for a real patient treated by one of the authors of this essay."},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-148-2-200801150-00004"},{"key":"e_1_2_9_14_1","unstructured":"Childerhoseet al. \u201cTreating Chronic Pain in Sickle Cell Disease.\u201d"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/AJP.0000000000000797"},{"key":"e_1_2_9_16_1","unstructured":"Ceglieet al. \u201cGenome Editing for Sickle Cell Disease.\u201d"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/pm\/pnw074"},{"key":"e_1_2_9_18_1","first-page":"575","article-title":"Racial Conflation: Agency, Black Action, and Criminal Intent","volume":"4","author":"Bierria A.","year":"2020","journal-title":"Journal of Social Philosophy"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/spc3.12161"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780198237907.001.0001"},{"key":"e_1_2_9_21_1","doi-asserted-by":"crossref","unstructured":"H.Ledford \u201cDoctors Cured Her Sickle-Cell Disease. So Why Is She Still in Pain \u201dNature September 17 2024.","DOI":"10.1038\/d41586-024-02994-2"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/medhum-2023-012653"},{"key":"e_1_2_9_23_1","unstructured":"K.Weintraub \u201cGene Therapy Might Cure Sickle Cell but at a Steep Cost for Patients Society \u201dUSA Today October 31 2023."},{"key":"e_1_2_9_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/0091217421989141"},{"key":"e_1_2_9_25_1","unstructured":"G.Kolata \u201cLife without Sickle Cell Beckons Boy Who Completed Gene Therapy \u201dNew York Times October 21 2024."},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2008.03.036"},{"key":"e_1_2_9_27_1","unstructured":"M.Molteni \u201cNew Gene Therapies Confront Many Sickle Cell Patients with an Impossible Choice: A Cure or Fertility \u201dSTAT News December 6 2023."},{"key":"e_1_2_9_28_1","unstructured":"Ibid."},{"key":"e_1_2_9_29_1","unstructured":"\u201cASCO Updates Clinical Practice Guidelines on Fertility Preservation in People with Cancer \u201d American Society of Clinical Oncology March 20 2025 https:\/\/www.asco.org\/about-asco\/press-center\/news-releases\/asco-updates-clinical-practice-guidelines-fertility-preservation."},{"key":"e_1_2_9_30_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1709585"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2020.03.025"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1080\/23294515.2024.2302996"},{"key":"e_1_2_9_33_1","unstructured":"Mishkinet al. \u201cFertility Concerns and Access for Stem Cell Transplantation Candidates with Sickle Cell Disease.\u201d"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12958-022-00984-5"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.1737"},{"key":"e_1_2_9_36_1","doi-asserted-by":"publisher","DOI":"10.1590\/1983-1447.2025.20240265.en"},{"key":"e_1_2_9_37_1","unstructured":"Guimar\u00e3eset al. \u201cObstetric Racism Suffered by Black Women in Prenatal and Childbirth Care\u201d; Boodman \u201cHow Doctors Are Pressuring Sickle Cell Patients into Unwanted Sterilizations.\u201d"},{"key":"e_1_2_9_38_1","unstructured":"Guimar\u00e3eset al. \u201cObstetric Racism Suffered by Black Women in Prenatal and Childbirth Care\u201d; Boodman \u201cHow Doctors Are Pressuring Sickle Cell Patients into Unwanted Sterilizations.\u201d"},{"key":"e_1_2_9_39_1","unstructured":"S. P.Thomas \u201cCoercive Sterilization: Reproductive Health and Ethical Concerns for Women Living with Sickle Cell Disease \u201dAmerican Journal of Bioethics(forthcoming)."},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.7326\/M23-1520"},{"key":"e_1_2_9_41_1","unstructured":"Farooq Mogayzel andLanzkron \u201cComparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity.\u201d"},{"key":"e_1_2_9_42_1","unstructured":"Ibid."}],"container-title":["Hastings Center Report"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/hast.70033","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/hast.70033","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/hast.70033","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,8]],"date-time":"2026-05-08T13:15:53Z","timestamp":1778246153000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/hast.70033"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5]]},"references-count":42,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,5]]}},"alternative-id":["10.1002\/hast.70033"],"URL":"https:\/\/doi.org\/10.1002\/hast.70033","archive":["Portico"],"relation":{},"ISSN":["0093-0334","1552-146X"],"issn-type":[{"value":"0093-0334","type":"print"},{"value":"1552-146X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5]]},"assertion":[{"value":"2026-05-06","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}