DTC genetic testing: pendulum swings and policy paradoxes

被引:6
作者
Caulfield, T. [1 ]
机构
[1] Univ Alberta, Ctr Law, Hlth Law & Sci Policy Grp, Edmonton, AB T6G 2H5, Canada
关键词
DTC genetic testing; ethics; health policy; regulatory policy; RISK;
D O I
10.1111/j.1399-0004.2011.01799.x
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
After decades of optimistic portrayals, there has been a shift in the way that the popular press represents genomic research. A skeptical view has become more common. The central reason for this pendulum swing away from popular support is the harsh truth that most genetic risk information just isn't that predictive. This reality has created a fascinating policy paradox. If, as many in the scientific community are now saying, genetic information is not the oracle of our future health as we were once led to believe, and if access does not, for most, cause harm, why regulate the area? Why worry about shoddy direct-to-consumer (DTC) genetic testing companies? One primary justification, and one endorsed by the recent Canadian College of Medical Geneticists (CCMG) Policy Statement on DTC Genetics Testing, is that information that is conveyed to the public about genetics via marketing and to those who access DTC tests should, at a minimum, be accurate.
引用
收藏
页码:4 / 6
页数:3
相关论文
共 25 条
[1]  
[Anonymous], 1999, SALT LAKE TRIBU 1226
[2]  
[Anonymous], NY TIMES 0612
[3]  
[Anonymous], 1994, TIME MAGAZINE 0117
[4]   Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk. [J].
Bloss, Cinnamon S. ;
Schork, Nicholas J. ;
Topol, Eric J. .
NEW ENGLAND JOURNAL OF MEDICINE, 2011, 364 (06) :524-534
[5]   Direct-to-consumer testing: if consumers are not anxious, why are policymakers? [J].
Caulfield, Timothy .
HUMAN GENETICS, 2011, 130 (01) :23-25
[6]   Impact of communicating personalized genetic risk information on perceived control over the risk: A systematic review [J].
Collins, Ruth E. ;
Wright, Alison J. ;
Marteau, Theresa M. .
GENETICS IN MEDICINE, 2011, 13 (04) :273-277
[7]   Framing genetic risk: trust and credibility markers in online direct-to-consumer advertising for genetic testing [J].
Einsiedel, Edna F. ;
Geransar, Rose .
NEW GENETICS AND SOCIETY, 2009, 28 (04) :339-362
[8]   Deflating the Genomic Bubble [J].
Evans, James P. ;
Meslin, Eric M. ;
Marteau, Theresa M. ;
Caulfield, Timothy .
SCIENCE, 2011, 331 (6019) :861-862
[9]   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
[10]   Revolution Postponed [J].
Hall, Stephen S. .
SCIENTIFIC AMERICAN, 2010, 303 (04) :60-67