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Table of Contents
Vol. 1, No. 3, 1998
Issue release date: March 1999
Section title: Paper
Community Genet 1998;1:148–153
(DOI:10.1159/000016154)

Toward a Framework of Mutualism: The Jewish Community in Genetics Research

Rothenberg K.H. · Rutkin A.B.
a University of Maryland School of Law, Baltimore, Md., and b Hadassah, New York, N.Y., USA

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Article / Publication Details

First-Page Preview
Abstract of Paper

Published online: 3/18/1999

Number of Print Pages: 6
Number of Figures: 0
Number of Tables: 0

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: http://www.karger.com/PHG

Abstract

The ability of scientists to identify genes believed to cause inherited diseases, including familial cancers, has become considerably refined over the last two decades because of technological breakthroughs. When research published in 1995 appeared to show that genetic mutations linked to breast and ovarian cancers (BRCA1 and BRCA2) occur more frequently in Jews of Eastern European descent than in the general population, the first response among Jewish women was to rush to participate in research. When a gene linked to colorectal cancer was identified in 6% of the Jewish population in 1997, however, press reports began to carry inaccurate and inflammatory headlines about Jewish ‘mutant gene carriers’, raising fears of discrimination and loss of privacy. Some rabbis and other leaders of the Jewish community began to quietly advise Jews not to get a genetic test or participate in genetics research until legal protections against discrimination are established. At the present time, a subtle tension is developing between the Jewish tradition of encouraging the acquisition of knowledge, particularly medical knowledge (exemplified by the community’s successful collaboration with genetic researchers when tests for Tay-Sachs disease were developed in the 1970s) and the fear of potential discrimination or stigmatization. In order to address this tension, and ensure the continued participation by the Jewish community in critical genetics research, a framework based on the mutual interests of researchers and participants should be formulated. Such a framework of dialogue and policy would be useful in building an important element of trust for the Jewish community and other distinct communities who are sought for such research.


Article / Publication Details

First-Page Preview
Abstract of Paper

Published online: 3/18/1999

Number of Print Pages: 6
Number of Figures: 0
Number of Tables: 0

ISSN: 1662-4246 (Print)
eISSN: 1662-8063 (Online)

For additional information: http://www.karger.com/PHG


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Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher or, in the case of photocopying, direct payment of a specified fee to the Copyright Clearance Center.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in goverment regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.

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