| Abstract |
It is perhaps a truism that each of us is greater than the sum of our
parts. This is particularly apparent when it comes to our tissues, our
cells, and their best-known contents, our DNA. In a few cases, such as the
case of a woman named Henrietta Lacks, an individual's tissue contains
such rare attributes as to result single-handedly in a scientific paradigm
shift. More typically, it is the study of vast numbers of tissue samples,
in concert, that allows science to move forward. Indeed, recent genetic
discoveries made possible by the study of vast repositories of tissue
samples known as 'biobanks' have made clear that, when studied in the
aggregate, the biological information contained in each of our individual
bodies can yield scientific insights and medical advances impossible
through the study of any one individual.
But the use of cells and tissues for research brings with it myriad legal
and ethical questions. How should we think about the contributors of these
cells and tissues? Are they - increasingly 'we' as the number of samples
contained in biobanks grows - human subjects of research? And, if so, what
consequences should flow from this classification? Should contributors be
given the opportunity to specify the type of research that they will
permit, or prohibit, with their specimen? Should they be told about
potential profits that may accrue to researchers from the use of their
tissues and, more to the point, be entitled to a share of such profits?
And what about potential health information derived from the
research-should they have access to it? Should others? Even more
challenging, what rules should govern the voluntary provision of tissues
by patient groups to researchers solely for the purpose of identifying the
cause of their disease and developing diagnostics and potential cures for
their condition? And perhaps most thorny of all: if, as some argue,
providing our tissues and cells for research is a moral imperative-part of
our collective civic responsibility-does that give rise to a reciprocal
moral imperative to ensure that all participants have access to the
medical therapies that their cells, among millions of others, helped to
produce.
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