The governance of genomic biobank research in Africa: reframing the regulatory tilt

被引:12
作者
Staunton, Ciara [1 ,2 ]
de Vries, Jantina [3 ]
机构
[1] Middlesex Univ, Sch Law, London, England
[2] Eurac Res, Inst Biomed, Bolzano, Italy
[3] Univ Cape Town, Dept Med, Cape Town, South Africa
关键词
regulation; ethics; genomics; biobank; Africa; reciprocity; DEVELOPING-COUNTRIES; BROAD CONSENT; TRUST; FUTURE; MODEL;
D O I
10.1093/jlb/lsz018
中图分类号
B82 [伦理学(道德学)];
学科分类号
摘要
Genomic biobank research has experienced exponential growth in recent years. It represents a real opportunity to remedy global health inequity that has seen limited investment in diseases affecting populations from low- and middle-income countries. Previous research in Africa was limited to so-called parachute research, whereby samples were taken from local populations for use in high-income countries with no local oversight or use of the sample. These exploitative practices must be guarded against, but the current regulation of genomic research in Africa adopts a precautionary approach that at times is restrictive in nature. We argue that the regulation and oversight of genomic biobank research should guard against exploitative research, but in a manner that promotes reciprocal benefit and not restrictive research practices. To achieve this, there must be a rebalancing of the regulatory tilt.
引用
收藏
页数:20
相关论文
共 72 条
[1]  
African Union, 2007, AFR CHART DEM EL GOV
[2]   Integrating common and rare genetic variation in diverse human populations [J].
Altshuler, David M. ;
Gibbs, Richard A. ;
Peltonen, Leena ;
Dermitzakis, Emmanouil ;
Schaffner, Stephen F. ;
Yu, Fuli ;
Bonnen, Penelope E. ;
de Bakker, Paul I. W. ;
Deloukas, Panos ;
Gabriel, Stacey B. ;
Gwilliam, Rhian ;
Hunt, Sarah ;
Inouye, Michael ;
Jia, Xiaoming ;
Palotie, Aarno ;
Parkin, Melissa ;
Whittaker, Pamela ;
Chang, Kyle ;
Hawes, Alicia ;
Lewis, Lora R. ;
Ren, Yanru ;
Wheeler, David ;
Muzny, Donna Marie ;
Barnes, Chris ;
Darvishi, Katayoon ;
Hurles, Matthew ;
Korn, Joshua M. ;
Kristiansson, Kati ;
Lee, Charles ;
McCarroll, Steven A. ;
Nemesh, James ;
Keinan, Alon ;
Montgomery, Stephen B. ;
Pollack, Samuela ;
Price, Alkes L. ;
Soranzo, Nicole ;
Gonzaga-Jauregui, Claudia ;
Anttila, Verneri ;
Brodeur, Wendy ;
Daly, Mark J. ;
Leslie, Stephen ;
McVean, Gil ;
Moutsianas, Loukas ;
Nguyen, Huy ;
Zhang, Qingrun ;
Ghori, Mohammed J. R. ;
McGinnis, Ralph ;
McLaren, William ;
Takeuchi, Fumihiko ;
Grossman, Sharon R. .
NATURE, 2010, 467 (7311) :52-58
[3]  
[Anonymous], 2022, The Geneva Declaration on Targeted Surveillance and Human Rights
[4]   National ethics guidance in Sub-Saharan Africa on the collection and use of human biological specimens: a systematic review [J].
Barchi, Francis ;
Little, Madison T. .
BMC MEDICAL ETHICS, 2016, 17
[5]   Engaging Maori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities [J].
Beaton, Angela ;
Hudson, Maui ;
Milne, Moe ;
Port, Ramari Viola ;
Russell, Khyla ;
Smith, Barry ;
Toki, Valmaine ;
Uerata, Lynley ;
Wilcox, Phillip ;
Bartholomew, Karen ;
Wihongi, Helen .
GENETICS IN MEDICINE, 2017, 19 (03) :345-351
[6]  
Better Regulation Taskforce, 2007, PRINC GOOD REG
[7]  
Brownsword R, 2007, BIOTECHNOL REGUL SER, P39
[8]  
BROWNSWORD ROGER, 2008, RIGHTS REGULATION TE, P451
[9]   Genomic research in Zambia: confronting the ethics, policy and regulatory frontiers in the 21st Century [J].
Chanda-Kapata, Pascalina ;
Kapata, Nathan ;
Moraes, Albertina Ngomah ;
Chongwe, Gershom ;
Munthali, James .
HEALTH RESEARCH POLICY AND SYSTEMS, 2015, 13
[10]   A call for global governance of biobanks [J].
Chen, Haidan ;
Pang, Tikki .
BULLETIN OF THE WORLD HEALTH ORGANIZATION, 2015, 93 (02) :113-117