Managing Incidental Genomic Findings in Clinical Trials: Fulfillment of the Principle of Justice

被引:11
作者
Dal-Re, Rafael [1 ]
Katsanis, Nicholas [2 ]
Katsanis, Sara [3 ]
Parker, Lisa S. [4 ]
Ayuso, Carmen [5 ,6 ]
机构
[1] Pasqual Maragall Fdn, Clin Res Program, Barcelona, Spain
[2] Duke Univ, Dept Med, Dept Cell Biol, Ctr Human Dis Modeling, Durham, NC USA
[3] Duke Univ, Duke Inst Genome Sci & Policy, Durham, NC USA
[4] Univ Pittsburgh, Ctr Bioeth & Hlth Law, Pittsburgh, PA USA
[5] Jimenez Diaz Fdn Univ Hosp IIS FJD, Dept Genet, Hlth Res Inst, Madrid, Spain
[6] Inst Salud Carlos III, CIBERER Ctr Invest Biomedica Red Enfermedades Rar, Madrid, Spain
关键词
ACMG RECOMMENDATIONS; PATIENT AUTONOMY; RESEARCHERS; RETURN; CARE;
D O I
10.1371/journal.pmed.1001584
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
[No abstract available]
引用
收藏
页数:4
相关论文
共 30 条
[1]   Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing [J].
Allyse, Megan ;
Michie, Marsha .
TRENDS IN BIOTECHNOLOGY, 2013, 31 (08) :439-441
[2]  
[Anonymous], 2002, INT ETH GUID BIOM RE
[3]  
[Anonymous], 1979, Federal Register, V44, P23192
[4]   Recommendations for returning genomic incidental findings? We need to talk! [J].
Burke, Wylie ;
Antommaria, Armand H. Matheny ;
Bennett, Robin ;
Botkin, Jeffrey ;
Clayton, Ellen Wright ;
Henderson, Gail E. ;
Holm, Ingrid A. ;
Jarvik, Gail P. ;
Khoury, Muin J. ;
Knoppers, Bartha Maria ;
Press, Nancy A. ;
Ross, Lainie Friedman ;
Rothstein, Mark A. ;
Saal, Howard ;
Uhlmann, Wendy R. ;
Wilfond, Benjamin ;
Wolf, Susan M. ;
Zimmern, Ron .
GENETICS IN MEDICINE, 2013, 15 (11) :854-859
[5]   Characteristics of Clinical Trials Registered in ClinicalTrials.gov, 2007-2010 [J].
Califf, Robert M. ;
Zarin, Deborah A. ;
Kramer, Judith M. ;
Sherman, Rachel E. ;
Aberle, Laura H. ;
Tasneem, Asba .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2012, 307 (17) :1838-1847
[6]   Managing incidental genomic findings: legal obligations of clinicians [J].
Clayton, Ellen Wright ;
Haga, Susanne ;
Kuszler, Patricia ;
Bane, Emily ;
Shutske, Krysta ;
Burke, Wylie .
GENETICS IN MEDICINE, 2013, 15 (08) :624-629
[7]  
Dresser R, 2011, OXFORD TXB CLIN RES, P231
[8]   IRB perspectives on the return of individual results from genomic research [J].
Dressler, Lynn G. ;
Smolek, Sondra ;
Ponsaran, Roselle ;
Markey, Janell M. ;
Starks, Helene ;
Gerson, Nancy ;
Lewis, Susan ;
Press, Nancy ;
Juengst, Eric ;
Wiesner, Georgia L. .
GENETICS IN MEDICINE, 2012, 14 (02) :215-222
[9]   Intentions to receive individual results from whole-genome sequencing among participants in the ClinSeq study [J].
Facio, Flavia M. ;
Eidem, Haley ;
Fisher, Tyler ;
Brooks, Stephanie ;
Linn, Amy ;
Kaphingst, Kimberly A. ;
Biesecker, Leslie G. ;
Biesecker, Barbara B. .
EUROPEAN JOURNAL OF HUMAN GENETICS, 2013, 21 (03) :261-265
[10]   Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? [J].
Gliwa, Catherine ;
Berkman, Benjamin E. .
AMERICAN JOURNAL OF BIOETHICS, 2013, 13 (02) :32-42