Dear Gaia:
I chair a latinamerican forum for ethics committess in health research. I am
very interested in your activity since indeed little atention is payed to
the issue, and even in those ERB that requiere the presence of a community
member that is not necesarily true. And in many cases it is not requiered at
all, at least as a national policy.
Finding and deciding who really represents the community is a big issue,
since the community is not a homogenic group. It is also true that other ERB
members think they are not able to understand and participate in the
protocol review, and sometimes tend to understimate they work; the community
representative can oftenly feel intimadate by the professionals and the
technical lenguage. Their present is very important; from my own
perspective, it is their presence that poses a real chalenge to the ERB,
since it is there where we have to prove that we are tolerant, that we can
really share a disscussion and listen to their view and worries as research
participants, receipients of the risks and benefits (social and physical)
from the research proposed.  I will try to gather information about this
topic, and I think you might be interested in interviewing people that have
played that role. In the ERB I am or have been part (I am based in Mexico),
two lacked member of community and two have, and their are active and
enthusiastic. I know one in Peru who is incredible active, she is interested
in orginizing a workshop with community memebers of ERB so we are truing to
do it for the region. This is only a young idea, but if you are interested,
I can keep you posted on our further thoughts.
Please let me know more information about your meeting and if there is a
chance to attend.
Thanks
Dafna Feinholz
National Commission  for Human Genome, Mexico. Academic Coordinator
FLACEIS: Latin American Forum for Ethics Committees for Health Research.
Chairperson.
Phone & Fax: (52 55) 56304274
----- Original Message -----
From: "gaia" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, February 13, 2004 12:25 PM
Subject: member of community and ethics committees


> Dear all,
> I'am coordinator of a research group on Rights & Ethics in Medicine, I am
> organizing in Italy a series of meeting on this issues "the role of member
> of community in the ethics committees -IRB-"
> Little is known about the roles and experiences of them and what
> contributions they are making to IRBs.
> I think community representation is one of the most important issues in
the
> discussion on medical research.
> I would like to receive from you ideas, experiences, documents...papers
and
> so on...
> can you help me?
> Thanks a lot in advance!!!
> Gaia
>
> Gaia Marsico
> REM coordinator
> Research group on Rights & Ethics in Medicine
> Segreteria-Coordinamento c/o:
> Centro Studi SIFO/Lab.di Epidemiologia Assistenziale e Sistemi Informatici
> Consorzio Mario Negri Sud - via Nazionale - 66030 Santa Maria Imbaro
> (Chieti)
> Tel. 0872.570256
> E-mail: [log in to unmask]
> SITO INTERNET:   http://easi.negrisud.it/etica