Ethical issues in human population genetics.
The ethical issues in human genetics have been
discussed at great length over the last several decades but most of
the discussions have focused on the consequences of human genetics for
individual people or at most for the families of which they're a part.
Genetics though almost uniquely among the biological sciences,
works at two levels.
It works at the individual level but it also works at the collective level.
Any genetic information that you have about one person, about me,
for example, also provide some genetic information,
probabilistic or otherwise, about my relatives.
Any allele I have must have come barring mutation from one of my parents,
may exist in one of my siblings,
may exist in one of my children.
It is this connectedness of families and ultimately of larger interrelated groupings,
whether we call them ethnic groups, nations, tribes,
races, areas of continental ancestry that makes human population genetics problematic or
gives human population genetics a special set of
ethical problems because it raises a special set of possible harms.
Harms not solely to individuals or perhaps better not directly to
individuals but things that harm individuals by harming groups of which they are a part.
What I'd like to do in the next few minutes is talk a little bit about
some of the issues involved in human population genetics,
some of the ethical issues.
I come to this with a long and I have
to confess somewhat sad history of having been involved in
the Human Genome Diversity Project as
the person most deeply involved in it's ethical deliberations.
And that project floundered in part because of opposition from indigenous groups,
from self appointed spokesmen for indigenous groups and from
others based on some of the ethical problems I'm going to discuss.
It's given me a great appreciation for these ethical problems.
It's also given me a great appreciation for
the difficulties that researchers may have if they start
doing population genetics without having paid
sufficient attention to the ethical concerns that go with it.