Patients' views on incidental findings from clinical exome sequencing
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作者:
Clift, Kristin E.
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Mayo Clin, Biomed Eth Program, Rochester, MN USAMayo Clin, Biomed Eth Program, Rochester, MN USA
Clift, Kristin E.
[1
]
Halverson, Colin M. E.
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机构:
Mayo Clin, Biomed Eth Program, Rochester, MN USA
Univ Chicago, Dept Anthropol, Chicago, IL 60637 USAMayo Clin, Biomed Eth Program, Rochester, MN USA
Halverson, Colin M. E.
[1
,2
]
Fiksdal, Alexander S.
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Mayo Clin, Biomed Eth Program, Rochester, MN USAMayo Clin, Biomed Eth Program, Rochester, MN USA
Fiksdal, Alexander S.
[1
]
Kumbamu, Ashok
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Mayo Clin, Biomed Eth Program, Rochester, MN USAMayo Clin, Biomed Eth Program, Rochester, MN USA
Kumbamu, Ashok
[1
]
Sharp, Richard R.
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Mayo Clin, Biomed Eth Program, Rochester, MN USA
Div Hlth Care Res & Policy, London, England
Div Gen Internal Med, Zurich, SwitzerlandMayo Clin, Biomed Eth Program, Rochester, MN USA
Sharp, Richard R.
[1
,3
,4
]
McCormick, Jennifer B.
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Mayo Clin, Biomed Eth Program, Rochester, MN USA
Div Hlth Care Res & Policy, London, England
Div Gen Internal Med, Zurich, SwitzerlandMayo Clin, Biomed Eth Program, Rochester, MN USA
McCormick, Jennifer B.
[1
,3
,4
]
机构:
[1] Mayo Clin, Biomed Eth Program, Rochester, MN USA
[2] Univ Chicago, Dept Anthropol, Chicago, IL 60637 USA
This article characterizes the opinions of patients and family members of patients undergoing clinical genomic-based testing regarding the return of incidental findings from these tests. Over sixteen months, we conducted 55 in-depth interviews with individuals to explore their preferences regarding which types of results they would like returned to them. Responses indicate a diversity of attitudes toward the return of incidental findings and a diversity of justifications for those attitudes. The majority of participants also described an imperative to include the patient in deciding which results to return rather than having universal, predetermined rules governing results disclosure. The results demonstrate the importance of a patient centered-approach to returning incidental findings. (C) 2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Gray, Stacy W.
Park, Elyse R.
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Massachusetts Gen Hosp, Boston, MA 02114 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Park, Elyse R.
Najita, Julie
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Dana Farber Canc Inst, Dept Biostat & Computat Biol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Najita, Julie
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Martins, Yolanda
Traeger, Lara
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Massachusetts Gen Hosp, Boston, MA 02114 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Traeger, Lara
Bair, Elizabeth
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Bair, Elizabeth
Gagne, Joshua
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Gagne, Joshua
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Garber, Judy
Janne, Pasi A.
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Janne, Pasi A.
Lindeman, Neal
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机构:
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womans Hosp, Dept Pathol, Boston, MA USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Lindeman, Neal
Lowenstein, Carol
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Lowenstein, Carol
Oliver, Nelly
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Oliver, Nelly
Sholl, Lynette
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Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womans Hosp, Dept Pathol, Boston, MA USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Sholl, Lynette
Van Allen, Eliezer M.
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机构:
Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USA
Broad Inst, Cambridge, MA USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Van Allen, Eliezer M.
Wagle, Nikhil
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USA
Broad Inst, Cambridge, MA USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Wagle, Nikhil
Wood, Sam
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Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Wood, Sam
Garraway, Levi
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机构:
Dana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Harvard Med Sch, Boston, MA 02115 USA
Brigham & Womens Hosp, Dept Med, 75 Francis St, Boston, MA 02115 USA
Broad Inst, Cambridge, MA USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
Garraway, Levi
Joffe, Steven
论文数: 0引用数: 0
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机构:
Univ Penn, Perelman Sch Med, Dept Med Eth & Hlth Policy, Philadelphia, PA 19104 USADana Farber Canc Inst, Dept Med Oncol, Boston, MA 02115 USA
机构:
Univ Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USAUniv Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA
Nishimura, Adam A.
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Shirts, Brian H.
Dorschner, Michael O.
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Univ Washington, Dept Lab Med, Seattle, WA 98195 USA
Univ Washington, Dept Genome Sci, Seattle, WA 98195 USA
Univ Washington, Dept Pathol, Seattle, WA 98195 USAUniv Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA
Dorschner, Michael O.
Amendola, Laura M.
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Univ Washington, Dept Med, Div Med Genet, Seattle, WA 98195 USAUniv Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA
Amendola, Laura M.
Smith, Joe W.
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Univ Washington, Sch Pharm, Seattle, WA 98195 USAUniv Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA
Smith, Joe W.
Jarvik, Gail P.
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Univ Washington, Dept Genome Sci, Seattle, WA 98195 USA
Univ Washington, Dept Med, Div Med Genet, Seattle, WA 98195 USAUniv Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA
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Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Harvard Univ, Sch Med, Boston, MA USA
Partners Healthcare Ctr Personalized Genet Med, Boston, MA USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Green, Robert C.
Berg, Jonathan S.
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Univ N Carolina, Sch Med, Dept Genet, Chapel Hill, NC USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Berg, Jonathan S.
Grody, Wayne W.
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Univ Calif Los Angeles, Sch Med, Div Med Genet, Dept Human Genet, Los Angeles, CA USA
Univ Calif Los Angeles, Sch Med, Dept Pathol & Lab Med, Div Mol Pathol, Los Angeles, CA 90024 USA
Univ Calif Los Angeles, Sch Med, Dept Pediat, Div Pediat Genet, Los Angeles, CA 90024 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Grody, Wayne W.
Kalia, Sarah S.
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Brigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Harvard Univ, Sch Med, Boston, MA USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Kalia, Sarah S.
Korf, Bruce R.
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Univ Alabama Birmingham, Dept Genet, Birmingham, AL USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Korf, Bruce R.
Martin, Christa L.
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Geisinger Hlth Syst, Autism & Dev Med Inst, Danville, PA USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Martin, Christa L.
McGuire, Amy L.
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Baylor Coll Med, Ctr Med Eth & Hlth Policy, Houston, TX 77030 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
McGuire, Amy L.
Nussbaum, Robert L.
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Univ Calif San Francisco, Dept Med, Div Genom Med, San Francisco, CA USA
Univ Calif San Francisco, Inst Human Genet, San Francisco, CA 94143 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Nussbaum, Robert L.
O'Daniel, Julianne M.
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Univ N Carolina, Sch Med, Dept Genet, Chapel Hill, NC USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
O'Daniel, Julianne M.
Ormond, Kelly E.
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Stanford Univ, Dept Genet, Stanford, CA 94305 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Ormond, Kelly E.
Rehm, Heidi L.
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Harvard Univ, Sch Med, Boston, MA USA
Partners Healthcare Ctr Personalized Genet Med, Boston, MA USA
Brigham & Womens Hosp, Dept Pathol, Boston, MA 02115 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Rehm, Heidi L.
Watson, Michael S.
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Amer Coll Med Genet & Genom, Bethesda, MD USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Watson, Michael S.
Williams, Marc S.
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机构:
Geisinger Hlth Syst, Genom Med Inst, Danville, PA USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
Williams, Marc S.
Biesecker, Leslie G.
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NHGRI, NIH, Bethesda, MD 20892 USABrigham & Womens Hosp, Dept Med, Div Genet, Boston, MA 02115 USA
机构:
Ctr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
Cohen, Camille
Bellanger, Emeline
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RHuMA, UMR BREED, INRA ENVA UVSQ, F-78180 Montigny le Bretonneux, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
Bellanger, Emeline
Mortreux, Jeremie
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Lab Eurofins Biomnis, Serv Genet, F-69007 Lyon, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
Mortreux, Jeremie
Raymond, Laure
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Lab Eurofins Biomnis, Serv Genet, F-69007 Lyon, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
Raymond, Laure
Vialard, Francois
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Ctr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
RHuMA, UMR BREED, INRA ENVA UVSQ, F-78180 Montigny le Bretonneux, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
Vialard, Francois
Dard, Rodolphe
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Ctr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, FranceCtr Hosp ntercommunal Poissy St Germain en Laye, Dept Genet, F-78300 Poissy, France
机构:
Bursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, TurkiyeBursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, Turkiye
Gorukmez, Ozlem
Gorukmez, Orhan
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机构:
Bursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, Turkiye
Bursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, TR-16310 Bursa, TurkiyeBursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, Turkiye
Gorukmez, Orhan
Topak, Ali
论文数: 0引用数: 0
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机构:
Bursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, TurkiyeBursa Yuksek Ihtisas Training & Res Hosp, Dept Med Genet, Bursa, Turkiye
机构:
Med Coll Wisconsin, Bioeth, Milwaukee, WI 53226 USA
Univ Calif San Francisco, Inst Hlth & Aging, San Francisco, CA 94143 USAMed Coll Wisconsin, Bioeth, Milwaukee, WI 53226 USA
May, Thomas
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2015,
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