Biobanking in British Columbia: discussions of the future of personalized medicine through deliberative public engagement

被引:58
作者
Burgess, Michael [2 ,3 ]
O'Doherty, Kieran [2 ]
Secko, David [1 ]
机构
[1] Concordia Univ, Dept Journalism, Montreal, PQ H4B 1R6, Canada
[2] Univ British Columbia, W Maurice Young Ctr Appl Eth, Vancouver, BC V6T 1Z2, Canada
[3] Univ British Columbia, Dept Med Genet, Vancouver, BC V6T 1Z2, Canada
关键词
Biobanks; Deliberative democracy; Personalized medicine; Public engagement;
D O I
10.2217/17410541.5.3.285
中图分类号
R9 [药学];
学科分类号
1007 ;
摘要
In this article, we examine the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. Biobanks are seen as a vital component in the rapid trend towards personalized medicine, which, while alluring, also face key issues relating to genetic discrimination, privacy, informed consent and a concern regarding how to develop and maintain the trust of citizens. We describe the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, Canada. We argue that the use of such methods is a necessity if we are to meaningfully consider diverse 'public interests' during the development of biobanks and thereby personalized medicine.
引用
收藏
页码:285 / 296
页数:12
相关论文
共 26 条
[1]   Deliberations about deliberative methods: issues in the design and evaluation of public participation processes [J].
Abelson, J ;
Forest, PG ;
Eyles, J ;
Smith, P ;
Martin, E ;
Gauvin, FP .
SOCIAL SCIENCE & MEDICINE, 2003, 57 (02) :239-251
[2]  
[Anonymous], INTEGRATED ASSESSMEN
[3]  
[Anonymous], 2005, DELIBERATIVE DEMOCRA
[4]   DNA on loan: Issues to consider when carrying out genetic research with aboriginal families and communities [J].
Arbour, L ;
Cook, D .
COMMUNITY GENETICS, 2006, 9 (03) :153-160
[5]   Survey article: The coming of age of deliberative democracy [J].
Bohman, J .
JOURNAL OF POLITICAL PHILOSOPHY, 1998, 6 (04) :400-425
[6]  
BROWNE RB, 1993, J AM CULTURE, V16, P91
[7]  
Burgess M. M., 2005, CROSSING GENOMICS PU, P157
[8]  
BURGESS MM, 2006, INTEGRATIVE ASSESSME, V6, P37
[9]  
BURGESS MM, IN PRESS HINDSIGHT F
[10]   Trends in ethical and legal frameworks for the use of human biobanks [J].
Cambon-Thomsen, A. ;
Rial-Sebbag, E. ;
Knoppers, B. M. .
EUROPEAN RESPIRATORY JOURNAL, 2007, 30 (02) :373-382