workshop at the Center for Twentieth Century Studies
University of Wisconsin-Milwaukee
|Session notes written by Trudy Turner.
Final Comments on the Workshop
Henry Greely -- A caution to remember the complexity of the world.
Eric Juengst -- Remember the set of questions that must always be
Dennis O'Rourke -- There is a need for open communication, dialogue
and discussion. There are lots of ways to have discussions and lots
of styles can be effective.
Frederika Kaestle -- Time is an issue for scientists. We cannot
use time to define our goals anymore. There are long-term benefits
for relationships with communities. We need to stop and think and
consult. This takes time, that we must be willing to give.
Morris Foster -- We need to more precisely define what kinds of
research we do next.
Jonathan Friedlaender -- We need to contextualize issues of informed
consent and move away from solving big problems with small solutions.
We need to look at the power relations in our research.
Lynn Jorde -- We need to think of the real harm to families suffering
from genetic diseases and those incarcerated unfairly.
Mike Bamshad -- The discussion needs to be opened up to scientists
from other disciplines and other advocacy groups. We also need a
better system for collecting data on the outcomes of the research.
JM Naidu -- Perceptions are different in different countries.
They may be the exact opposite of what is found in the United States, especially
in terms of naming communities.
Charmaine Royal -- The need for dialogue with the community cannot
be overstated. Need to have researchers from the community involved
in the research.
Frank Dukepoo -- Box. We need to see more than just the 16
squares. This isthe challenge and there is a long way to go.
This is serious business. And we need to hear from Asians and Hispanics.
In terms of communication, we need to share what is going on internally.
We need to speak from the heart about how we feel. This is really
a big sociological experiment. Minorities are saying "We have concerns."
Are we listening?