Return of results and data to study participants

被引:26
作者
Wolf, Susan M. [1 ]
Evans, Barbara J. [2 ]
机构
[1] Univ Minnesota, Sch Med, Sch Law, Consortium Law & Values Hlth Environm & Life Sci, Minneapolis, MN 55455 USA
[2] Univ Houston, Ctr Law, Dept Elect & Comp Engn, Ctr Biotechnol & Law, Houston, TX 77004 USA
基金
美国国家卫生研究院;
关键词
MANAGING INCIDENTAL FINDINGS;
D O I
10.1126/science.aav0005
中图分类号
O [数理科学和化学]; P [天文学、地球科学]; Q [生物科学]; N [自然科学总论];
学科分类号
07 ; 0710 ; 09 ;
摘要
引用
收藏
页码:159 / 160
页数:2
相关论文
共 10 条
[1]  
[Anonymous], 2018, RET IND RES RES PART
[2]  
Boronow KE, 2017, ENVIRON HEALTH PERSP, V125, pA27, DOI [10.1289/ehp702, 10.1289/EHP702]
[3]   Return of results: Ethical and legal distinctions between research and clinical care [J].
Burke, Wylie ;
Evans, Barbara J. ;
Jarvik, Gail P. .
AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS, 2014, 166 (01) :105-111
[4]   Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants Updated Guidelines From a National Heart, Lung, and Blood Institute Working Group [J].
Fabsitz, Richard R. ;
McGuire, Amy ;
Sharp, Richard R. ;
Puggal, Mona ;
Beskow, Laura M. ;
Biesecker, Leslie G. ;
Bookman, Ebony ;
Burke, Wylie ;
Burchard, Esteban Gonzalez ;
Church, George ;
Clayton, Ellen Wright ;
Eckfeldt, John H. ;
Fernandez, Conrad V. ;
Fisher, Rebecca ;
Fullerton, Stephanie M. ;
Gabriel, Stacey ;
Gachupin, Francine ;
James, Cynthia ;
Jarvik, Gail P. ;
Kittles, Rick ;
Leib, Jennifer R. ;
O'Donnell, Christopher ;
O'Rourke, P. Pearl ;
Rodriguez, Laura Lyman ;
Schully, Sheri D. ;
Shuldiner, Alan R. ;
Sze, Rebecca K. F. ;
Thakuria, Joseph V. ;
Wolf, Susan M. ;
Burke, Gregory L. .
CIRCULATION-CARDIOVASCULAR GENETICS, 2010, 3 (06) :574-580
[5]   Do IRBs Protect Human Research Participants? [J].
Grady, Christine .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2010, 304 (10) :1122-1123
[6]   Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between [J].
Jarvik, Gail P. ;
Amendola, Laura M. ;
Berg, Jonathan S. ;
Brothers, Kyle ;
Clayton, Ellen W. ;
Chung, Wendy ;
Evans, Barbara J. ;
Evans, James P. ;
Fullerton, Stephanie M. ;
Gallego, Carlos J. ;
Garrison, Nanibaa' A. ;
Gray, Stacy W. ;
Holm, Ingrid A. ;
Kullo, Iftikhar J. ;
Lehmann, Lisa Soleymani ;
McCarty, Cathy ;
Prows, Cynthia A. ;
Rehm, Heidi L. ;
Sharp, Richard R. ;
Salama, Joseph ;
Sanderson, Saskia ;
Van Driest, Sara L. ;
Williams, Marc S. ;
Wolf, Susan M. ;
Wolf, Wendy A. ;
Burke, Wylie .
AMERICAN JOURNAL OF HUMAN GENETICS, 2014, 94 (06) :818-826
[7]  
Pierce Jr R. J., 2010, ADMIN LAW TREATISE, V1
[8]   APPLaUD: access for patients and participants to individual level uninterpreted genomic data [J].
Thorogood, Adrian ;
Bobe, Jason ;
Prainsack, Barbara ;
Middleton, Anna ;
Scott, Erick ;
Nelson, Sarah ;
Corpas, Manuel ;
Bonhomme, Natasha ;
Rodriguez, Laura Lyman ;
Murtagh, Madeleine ;
Kleiderman, Erika .
HUMAN GENOMICS, 2018, 12
[9]   Managing incidental findings in human subjects research: Analysis and recommendations [J].
Wolf, Susan M. ;
Lawrenz, Frances P. ;
Nelson, Charles A. ;
Kahn, Jeffrey P. ;
Cho, Mildred K. ;
Clayton, Ellen Wright ;
Fletcher, Joel G. ;
Georgieff, Michael K. ;
Hammerschmidt, Dale ;
Hudson, Kathy ;
Illes, Judy ;
Kapur, Vivek ;
Keane, Moira A. ;
Koenig, Barbara A. ;
LeRoy, Bonnie S. ;
McFarland, Elizabeth G. ;
Paradise, Jordan ;
Parker, Lisa S. ;
Terry, Sharon F. ;
Van Ness, Brian ;
Wilfond, Benjamin S. .
JOURNAL OF LAW MEDICINE & ETHICS, 2008, 36 (02) :219-248
[10]   Managing incidental findings and research results in genomic research involving biobanks and archived data sets [J].
Wolf, Susan M. ;
Crock, Brittney N. ;
Van Ness, Brian ;
Lawrenz, Frances ;
Kahn, Jeffrey P. ;
Beskow, Laura M. ;
Cho, Mildred K. ;
Christman, Michael F. ;
Green, Robert C. ;
Hall, Ralph ;
Illes, Judy ;
Keane, Moira ;
Knoppers, Bartha M. ;
Koenig, Barbara A. ;
Kohane, Isaac S. ;
LeRoy, Bonnie ;
Maschke, Karen J. ;
McGeveran, William ;
Ossorio, Pilar ;
Parker, Lisa S. ;
Petersen, Gloria M. ;
Richardson, Henry S. ;
Scott, Joan A. ;
Terry, Sharon F. ;
Wilfond, Benjamin S. ;
Wolf, Wendy A. .
GENETICS IN MEDICINE, 2012, 14 (04) :361-384