Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group

Author

FABSITZ, Richard R¹ ; MCGUIRE, Amy² ; WRIGHT CLAYTON, Ellen¹¹ ; ECKFELDT, John H¹² ; FERNANDEZ, Conrad V¹³ ; FISHER, Rebecca¹⁴ ; FULLERTON, Stephanie M¹⁵ ; GABRIEL, Stacey¹⁶ ; GACHUPIN, Francine¹⁷ ; JAMES, Cynthia¹⁸ ; JARVIK, Gail P¹⁹ ; KITTLES, Rick²⁰ ; SHARP, Richard R³ ; LEIB, Jennifer R²¹ ; O'DONNELL, Christopher²² ; O'ROURKE, P. Pearl²³ ; LYMAN RODRIGUEZ, Laura²⁴ ; SCHULLY, Sheri D²⁵ ; SHULDINER, Alan R; SZE, Rebecca K. F; THAKURIA, Joseph V; WOLF, Susan M⁷ ; BURKE, Gregory L¹ ; PUGGAL, Mona⁴ ; BESKOW, Laura M⁵ ; BIESECKER, Leslie G⁶ ; BOOKMAN, Ebony⁷ ; BURKE, Wylie⁸ ; GONZALEZ BURCHARD, Esteban⁹ ; CHURCH, George¹⁰
[1] Division of Cardiovascular Sciences National Heart, Lung, and Blood Institute, Bethesda, Md, United States
[2] Center for Medical Ethics and Health Policy Baylor College of Medicine, Houston, Tex, United States
[3] Department of Bioethics , Cleveland Clinic, Cleveland, Ohio, United States
[4] Duke Institute for Genome Sciences and Policy Duke University, Durham, NC, United States
[5] Genetic Diseases Research Branch , National Human Genome Research Institute, Bethesda, Md, United States
[6] Office of Population Genomics National Human Genome Research Institute, Bethesda, Md, United States
[7] Department of Bioethics and Humanities University of Washington, Seattle, Wash, United States
[8] Pulmonary and Critical Care Division University of California San Francisco, San Francisco, Calif, United States
[9] Department of Genetics Harvard Medical School, Boston, Mass, United States
[10] Center for Biomedical Ethics and Society Vanderbilt University School of Law, Nashville, Tenn, United States
[11] Department of Laboratory Medicine and Pathology , University of Minnesota, Minneapolis, Minn, United States
[12] IWK Health Center , Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada
[13] Patient Advocate, Oakton, Va, United States
[14] Genetic Analysis Platform , Broad Institute, Boston, Mass, United States
[15] Southwest Tribal Epidemiology Center, Albuquerque, NM, United States
[16] Division of Medicine/Cardiology Johns Hopkins University, Baltimore, Md, United States
[17] Division of Medical Genetics , University of Washington School of Medicine, Seattle, Wash, United States
[18] College of Medicine , University of Illinois Chicago, Chicago, Ill, United States
[19] Health Futures, LLC, Washington, DC, United States
[20] Framingham Heart Study National Heart, Lung, and Blood Institute, Framingham, Mass, United States
[21] Health Research Affairs Partners Health Care System, Inc, Boston, Mass, United States
[22] Office of Policy, Communications, and Education National Human Genome Research Institute, Bethesda, Md, United States
[23] Epidemiology and Genetic Research Program , National Cancer Institute, Bethesda, Md, United States
[24] Division of Endocrinology, Diabetes, and Nutrition University of Maryland School of Medicine, Baltimore, Md, United States
[25] Charles B. Wang Community Health Center, New York, NY, United States

Source

Circulation. Cardiovascular genetics (Print). 2010, Vol 3, Num 6, pp 574-580, 7 p ; ref : 30 ref

ISSN

1942-325X

Scientific domain

Cardiology, blood circulation, phlebology

Publisher

Lippincott Williams & Wilkins, Hagerstown, MD

Publication country

United States

Document type

Article

Language

English

Author keyword

consent ethics genetics research genetics risk prediction single-nucleotide polymorphism genetics

Keyword (fr)

Article synthèse Attente Changement Coeur Communauté Complexe Droit Durée Ethique Facteur risque Groupe sanguin Guidage Génétique Homme Information Institution Manutention Multiple Nombre Normalisation Offre Politique sanitaire Poumon Recommandation Revue bibliographique Risque Sang

Keyword (en)

Review Expectation Change Heart Community Complexes Right Duration Ethics Risk factor Blood group Guidance Genetics Human Information Institution Handling Multiple Number Standardization Offer Health policy Lung Recommendation Bibliographic review Risk Blood

Keyword (es)

Artículo síntesis Expectación Cambio Corazón Comunidad Complejo Derecho Duración Etica Factor riesgo Grupo sanguíneo Guiado Genética Hombre Información Institución Manutención Múltiple Número Normalización Oferta Política sanitaria Pulmón Recomendación Revista bibliográfica Riesgo Sangre

Classification

Pascal

002 Biological and medical sciences / 002B Medical sciences / 002B23 Medical genetics

Discipline

Medical genetics

Origin

Inist-CNRS

Database

PASCAL

INIST identifier

23711603

Sauf mention contraire ci-dessus, le contenu de cette notice bibliographique peut être utilisé dans le cadre d’une licence CC BY 4.0 Inist-CNRS / Unless otherwise stated above, the content of this bibliographic record may be used under a CC BY 4.0 licence by Inist-CNRS / A menos que se haya señalado antes, el contenido de este registro bibliográfico puede ser utilizado al amparo de una licencia CC BY 4.0 Inist-CNRS