You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative

被引:30
作者
Angrist, Misha [1 ]
机构
[1] Duke Univ, Inst Genome Sci & Policy, Durham, NC 27708 USA
关键词
biobanking; genomic data; research ethics; return of results; GENETIC DISCRIMINATION; PSYCHOLOGICAL IMPACT; HEALTH-INSURANCE; INFORMATION; RISK; PERCEPTIONS; PROTECTIONS; DISCLOSURE; DISCOVERY; GENOMICS;
D O I
10.2217/PME.11.62
中图分类号
R9 [药学];
学科分类号
1007 ;
摘要
The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other 'omic' data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants' lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.
引用
收藏
页码:651 / 657
页数:7
相关论文
共 78 条
[31]   The dysregulation of human subjects research [J].
Fost, Norman ;
Levine, Robert J. .
JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 2007, 298 (18) :2196-2198
[32]   Field guide to next-generation DNA sequencers [J].
Glenn, Travis C. .
MOLECULAR ECOLOGY RESOURCES, 2011, 11 (05) :759-769
[33]   The scientist delusion [J].
Goldston, David .
NATURE, 2008, 452 (7183) :17-17
[34]  
Grady D, NY TIMES 0606
[35]   The uneasy ethical and legal underpinnings of large-scale genomic biobanks [J].
Greely, Henry T. .
ANNUAL REVIEW OF GENOMICS AND HUMAN GENETICS, 2007, 8 :343-364
[36]   Disclosure of APOE Genotype for Risk of Alzheimer's Disease [J].
Green, Robert C. ;
Roberts, J. Scott ;
Cupples, L. Adrienne ;
Relkin, Norman R. ;
Whitehouse, Peter J. ;
Brown, Tamsen ;
Eckert, Susan LaRusse ;
Butson, Melissa ;
Sadovnick, A. Dessa ;
Quaid, Kimberly A. ;
Chen, Clara ;
Cook-Deegan, Robert ;
Farrer, Lindsay A. .
NEW ENGLAND JOURNAL OF MEDICINE, 2009, 361 (03) :245-254
[37]   Does genomic risk information motivate people to change their behavior? [J].
Henrikson, Nora B. ;
Bowen, Deborah ;
Burke, Wylie .
GENOME MEDICINE, 2009, 1
[38]  
Jaroff Leon, 1989, Time, V133, P62
[39]   Gene concepts and genethics: Beyond exceptionalism [J].
Kakuk, Peter .
SCIENCE AND ENGINEERING ETHICS, 2008, 14 (03) :357-375
[40]   Access to health insurance: Experiences and attitudes of those with genetic versus non-genetic medical conditions [J].
Kass, Nancy E. ;
Medley, Amy M. ;
Natowicz, Marvin R. ;
Hull, Sara Chandros ;
Faden, Ruth R. ;
Plantinga, Laura ;
Gostin, Lawrence O. .
AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2007, 143A (07) :707-717