Trust, exploitation and vulnerability in consent to biobank research – Experiences from Pakistan

TY - ABST

T1 - Trust, exploitation and vulnerability in consent to biobank research – Experiences from Pakistan

AU - Kongsholm, Nana Cecilie Halmsted

PY - 2017

Y1 - 2017

N2 - There is little doubt that consent – be it blanket, broad or informed – is of central ethical importance in the context of medical research, including biobank research. Accordingly, much attention has been focused on developing appropriate consent models that adequately protect the interests of biobank donors. However, this focus risks overlooking important ethical issues in certain specific contexts that are not easily dealt with by a standard consent model.Drawing on findings from a qualitative interview study with biobank donors from rural Pakistan in lieu of the Global Genes, Local Concerns project, we demonstrate how psychological, cultural and structural factors in this particular context may pose serious ethical challenges that are far from adequately accommodated by (and may in fact thrive under) any standard consent scheme.

AB - There is little doubt that consent – be it blanket, broad or informed – is of central ethical importance in the context of medical research, including biobank research. Accordingly, much attention has been focused on developing appropriate consent models that adequately protect the interests of biobank donors. However, this focus risks overlooking important ethical issues in certain specific contexts that are not easily dealt with by a standard consent model.Drawing on findings from a qualitative interview study with biobank donors from rural Pakistan in lieu of the Global Genes, Local Concerns project, we demonstrate how psychological, cultural and structural factors in this particular context may pose serious ethical challenges that are far from adequately accommodated by (and may in fact thrive under) any standard consent scheme.

UR - http://globalgenes.ku.dk/calender/international-biobanking/programme/

M3 - Conference abstract for conference

T2 - Global Genes and Local Concerns in Biobanking, Global Genes, Local Concerns: A Symposium on Legal, Ethical and Scientific Challenges in International Biobanking, University of Copenhagen

Y2 - 15 March 2017 through 16 March 2017

ER -