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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