Individualized interventions for rare genetic conditions and the research-treatment spectrum: Stakeholder perspectives.

Lee, Sandra Soo-Jin; Caruncho, Mikaella; Chung, Wendy K; Johnston, Josephine; Tabb, Kathryn; Appelbaum, Paul S

Lee, Sandra Soo-Jin; Caruncho, Mikaella; Chung, Wendy K; Johnston, Josephine; Tabb, Kathryn; Appelbaum, Paul S.

Afiliação

Lee SS; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY. Electronic address: sandra.lee@columbia.edu.
Caruncho M; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY.
Chung WK; Departments of Pediatrics and Medicine, Columbia University, New York, NY.
Johnston J; The Hastings Center, Garrison, NY.
Tabb K; Department of Philosophy, Bard College, Annandale-on-Hudson, NY.
Appelbaum PS; Department of Psychiatry and New York State Psychiatric Institute, Columbia University, New York, NY.

Genet Med ; 25(6): 100832, 2023 06.

Article em En | MEDLINE | ID: mdl-36964709

Assuntos

Pais; Doenças Raras; Humanos; Doenças Raras/genética; Doenças Raras/terapia; Motivação; Engenharia Genética; Pesquisa Qualitativa

Palavras-chave

Ethics; Gene therapy; Pediatrics; Rare genetic disease; Regulatory governance

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Texto completo: 1 Bases de dados: MEDLINE Assunto principal: Pais / Doenças Raras Tipo de estudo: Qualitative_research Limite: Humans Idioma: En Revista: Genet Med Assunto da revista: GENETICA MEDICA Ano de publicação: 2023 Tipo de documento: Article

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