Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small

被引:49
作者
Sharp, Richard R. [1 ,2 ,3 ]
机构
[1] Cleveland Clin, Dept Bioeth, Cleveland, OH 44195 USA
[2] Cleveland Clin, Genom Med Inst, Lerner Coll Med, Cleveland, OH 44195 USA
[3] Case Western Reserve Univ, Ctr Genet Res Eth & Law, Cleveland, OH 44106 USA
关键词
whole genome sequencing; personalized medicine; ethical; legal and social issues; informed consent; return of results; FAMILY-MEMBERS; HEALTH-CARE; GENETICS; DUTY; INDIVIDUALS; MICROARRAY; ISSUES; TECHNOLOGY; KNOWLEDGE; ATTITUDES;
D O I
10.1097/GIM.0b013e31820f603f
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
As we look to a time when whole-genome sequencing is integrated into patient care, it is possible to anticipate a number of ethical challenges that will need to be addressed. The most intractable of these concern informed consent and the responsible management of very large amounts of genetic information. Given the range of possible findings, it remains unclear to what extent it will be possible to obtain meaningful patient consent to genomic testing. Equally unclear is how clinicians will disseminate the enormous volume of genetic information produced by whole-genome sequencing. Toward developing practical strategies for managing these ethical challenges, we propose a research agenda that approaches multiplexed forms of clinical genetic testing as natural laboratories in which to develop best practices for managing the ethical complexities of genomic medicine. Genet Med 2011: 13(3): 191-194.
引用
收藏
页码:191 / 194
页数:4
相关论文
共 50 条
[1]   Microarray data analysis: from disarray to consolidation and consensus [J].
Allison, DB ;
Cui, XQ ;
Page, GP ;
Sabripour, M .
NATURE REVIEWS GENETICS, 2006, 7 (01) :55-65
[2]   Clinical assessment incorporating a personal genome [J].
Ashley, Euan A. ;
Butte, Atul J. ;
Wheeler, Matthew T. ;
Chen, Rong ;
Klein, Teri E. ;
Dewey, Frederick E. ;
Dudley, Joel T. ;
Ormond, Kelly E. ;
Pavlovic, Aleksandra ;
Morgan, Alexander A. ;
Pushkarev, Dmitry ;
Neff, Norma F. ;
Hudgins, Louanne ;
Gong, Li ;
Hodges, Laura M. ;
Berlin, Dorit S. ;
Thorn, Caroline F. ;
Sangkuhl, Katrin ;
Hebert, Joan M. ;
Woon, Mark ;
Sagreiya, Hersh ;
Whaley, Ryan ;
Knowles, Joshua W. ;
Chou, Michael F. ;
Thakuria, Joseph V. ;
Rosenbaum, Abraham M. ;
Zaranek, Alexander Wait ;
Church, George M. ;
Greely, Henry T. ;
Quake, Stephen R. ;
Altman, Russ B. .
LANCET, 2010, 375 (9725) :1525-1535
[3]   Deficient knowledge of genetics relevant for daily practice among medical students nearing graduation [J].
Baars, MJH ;
Scherpbier, AJJA ;
Schuwirth, LW ;
Henneman, L ;
Beemer, FA ;
Cobben, JM ;
Hennekam, RCM ;
Verweij, MMJJ ;
Cornel, MC ;
ten Kate, LP .
GENETICS IN MEDICINE, 2005, 7 (05) :295-301
[4]   Ethical issues raised by common copy number variants and single nucleotide polymorphisms of certain and uncertain significance in general medical practice [J].
Beaudet, Arthur L. .
GENOME MEDICINE, 2010, 2
[5]   Offering Individual Genetic Research Results: Context Matters [J].
Beskow, Laura M. ;
Burke, Wylie .
SCIENCE TRANSLATIONAL MEDICINE, 2010, 2 (38)
[6]   Whole-exome sequencing identifies recessive WDR62 mutations in severe brain malformations [J].
Bilguvar, Kaya ;
Ozturk, Ali Kemal ;
Louvi, Angeliki ;
Kwan, Kenneth Y. ;
Choi, Murim ;
Tatli, Burak ;
Yalnizoglu, Dilek ;
Tuysuz, Beyhan ;
Caglayan, Ahmet Okay ;
Gokben, Sarenur ;
Kaymakcalan, Hande ;
Barak, Tanyeri ;
Bakircioglu, Mehmet ;
Yasuno, Katsuhito ;
Ho, Winson ;
Sanders, Stephan ;
Zhu, Ying ;
Yilmaz, Sanem ;
Dincer, Alp ;
Johnson, Michele H. ;
Bronen, Richard A. ;
Kocer, Naci ;
Per, Hueseyin ;
Mane, Shrikant ;
Pamir, Mehmet Necmettin ;
Yalcinkaya, Cengiz ;
Kumandas, Sefer ;
Topcu, Meral ;
Ozmen, Meral ;
Sestan, Nenad ;
Lifton, Richard P. ;
State, Matthew W. ;
Gunel, Murat .
NATURE, 2010, 467 (7312) :207-U93
[7]   Science and society - Genetics education for primary-care providers [J].
Burke, W ;
Emery, J .
NATURE REVIEWS GENETICS, 2002, 3 (07) :561-566
[8]   Advances in sequencing technology [J].
Chan, EY .
MUTATION RESEARCH-FUNDAMENTAL AND MOLECULAR MECHANISMS OF MUTAGENESIS, 2005, 573 (1-2) :13-40
[9]   GENERIC CONSENT FOR GENETIC SCREENING [J].
ELIAS, S ;
ANNAS, GJ .
NEW ENGLAND JOURNAL OF MEDICINE, 1994, 330 (22) :1611-1613
[10]   Genomic Medicine: Genomic Medicine -- An Updated Primer. [J].
Feero, W. Gregory ;
Guttmacher, Alan E. ;
Collins, Francis S. .
NEW ENGLAND JOURNAL OF MEDICINE, 2010, 362 (21) :2001-2011