Patients' views on incidental findings from clinical exome sequencing

被引:71
|
作者
Clift, Kristin E. [1 ]
Halverson, Colin M. E. [1 ,2 ]
Fiksdal, Alexander S. [1 ]
Kumbamu, Ashok [1 ]
Sharp, Richard R. [1 ,3 ,4 ]
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
[3] Div Hlth Care Res & Policy, London, England
[4] Div Gen Internal Med, Zurich, Switzerland
来源
APPLIED AND TRANSLATIONAL GENOMICS | 2015年 / 4卷
关键词
Clinical genomics; Return of results; Incidental finding; Qualitative research; ELSI; Attitude; Precision Medicine;
D O I
10.1016/j.atg.2015.02.005
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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/).
引用
收藏
页码:38 / 43
页数:6
相关论文
共 50 条
  • [1] Oncologists' and cancer patients' views on whole-exome sequencing and incidental findings: results from the CanSeq study
    Gray, Stacy W.
    Park, Elyse R.
    Najita, Julie
    Martins, Yolanda
    Traeger, Lara
    Bair, Elizabeth
    Gagne, Joshua
    Garber, Judy
    Janne, Pasi A.
    Lindeman, Neal
    Lowenstein, Carol
    Oliver, Nelly
    Sholl, Lynette
    Van Allen, Eliezer M.
    Wagle, Nikhil
    Wood, Sam
    Garraway, Levi
    Joffe, Steven
    GENETICS IN MEDICINE, 2016, 18 (10) : 1011 - 1019
  • [2] Whole Exome Sequencing in South Africa: Stakeholder Views on Return of Individual Research Results and Incidental Findings
    Van der Merwe, Nicole
    Ramesar, Raj
    De Vries, Jantina
    FRONTIERS IN GENETICS, 2022, 13
  • [3] Pharmacogenomic findings from clinical whole exome sequencing of diagnostic odyssey patients
    Cousin, Margot A.
    Matey, Eric T.
    Blackburn, Patrick R.
    Boczek, Nicole J.
    McAllister, Tammy M.
    Kruisselbrink, Teresa M.
    Babovic-Vuksanovic, Dusica
    Lazaridis, Konstantinos N.
    Klee, Eric W.
    MOLECULAR GENETICS & GENOMIC MEDICINE, 2017, 5 (03): : 269 - 279
  • [4] Incidental Findings from Clinical Genome-Wide Sequencing: A Review
    Lohn, Z.
    Adam, S.
    Birch, P. H.
    Friedman, J. M.
    JOURNAL OF GENETIC COUNSELING, 2014, 23 (04) : 463 - 473
  • [5] Minimizing liability risks under the ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing
    Evans, Barbara J.
    GENETICS IN MEDICINE, 2013, 15 (12) : 915 - 920
  • [6] Incidental findings from clinical sequencing in Greece: reporting experts’ attitudes
    Gourna E.G.
    Armstrong N.
    Wallace S.E.
    Journal of Community Genetics, 2014, 5 (4) : 383 - 393
  • [7] Incidental diagnosis of tuberous sclerosis complex by exome sequencing in three families with subclinical findings
    Caylor, R. C.
    Grote, L.
    Thiffault, I.
    Farrow, E. G.
    Willig, L.
    Soden, S.
    Amudhavalli, S. M.
    Nopper, A. J.
    Horii, K. A.
    Fleming, E.
    Jenkins, J.
    Welsh, H.
    Ilyas, M.
    Engleman, K.
    Abdelmoity, A.
    Saunders, C. J.
    NEUROGENETICS, 2018, 19 (03) : 205 - 213
  • [8] Incidental diagnosis of tuberous sclerosis complex by exome sequencing in three families with subclinical findings
    R. C. Caylor
    L. Grote
    I. Thiffault
    E. G. Farrow
    L. Willig
    S. Soden
    S. M. Amudhavalli
    A. J. Nopper
    K. A. Horii
    E. Fleming
    J. Jenkins
    H. Welsh
    M. Ilyas
    K. Engleman
    A. Abdelmoity
    C. J. Saunders
    neurogenetics, 2018, 19 : 205 - 213
  • [9] Reporting Incidental Findings in Clinical Whole Exome Sequencing: Incorporation of the 2013 ACMG Recommendations into Current Practices of Genetic Counseling
    Smith, Lacey A.
    Douglas, Jessica
    Braxton, Alicia A.
    Kramer, Kate
    JOURNAL OF GENETIC COUNSELING, 2015, 24 (04) : 654 - 662
  • [10] Views of primary care providers regarding the return of genome sequencing incidental findings
    Strong, K. A.
    Zusevics, K. L.
    Bick, D.
    Veith, R.
    CLINICAL GENETICS, 2014, 86 (05) : 461 - 468