The research importance of biobanked biological
materials and their derived data is growing, especially as these are
increasingly linked with individual and population-level medical and health
information. The number, diversity, and size of biobanks are growing in tandem.
So, too, is the number of individuals whose donations are being used in
biobank-supported research, with or without their knowledge. Pretty soon, we
all will be “participants” in a variety of research projects we know nothing
about. Until recently, our leftover tissue or deidentified medical information
could be used for research without our consent or even our knowledge. Even if
we’ve been asked—as the current regulations require when research uses are
anticipated—we were most likely asked to give a blanket consent to any future
use, with no prospect of learning about or controlling how our material is
later used. This is an ethically problematic state of affairs, but there are
options for improving it.
The research importance of biobanked biological
materials and their derived data is growing, especially as these are
increasingly linked with individual and population-level medical and health
information. The number, diversity, and size of biobanks are growing in tandem.
So, too, is the number of individuals whose donations are being used in
biobank-supported research, with or without their knowledge. Pretty soon, we
all will be “participants” in a variety of research projects we know nothing
about. Until recently, our leftover tissue or deidentified medical information
could be used for research without our consent or even our knowledge. Even if
we’ve been asked—as the current regulations require when research uses are
anticipated—we were most likely asked to give a blanket consent to any future
use, with no prospect of learning about or controlling how our material is
later used. This is an ethically problematic state of affairs, but there are
options for improving it.