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From: steven perkins <>
Subject: [DNA] Article: Statement of the European Journal of Human Geneticson DTC genetic testing for health related purposes
Date: Sun, 21 Nov 2010 16:58:37 -0500


http://www.nature.com/ejhg/journal/v18/n12/full/ejhg2010129a.html

Policy

European Journal of Human Genetics (2010) 18, 1271–1273;
doi:10.1038/ejhg.2010.129; published online 25 August 2010

Statement of the ESHG on direct-to-consumer genetic testing for
health-related purposes

European Society of Human Genetics

Correspondence: Dr P Borry, Center for Biomedical Ethics and Law - BOX
7001, KU Leuven, Kapucijnenvoer 35/3, Leuven 3000, Belgium. E-mail:


Abstract

<blockquote>Many private companies offer direct-to-consumer (DTC)
genetic testing services. Some tests may detect severe and highly
penetrant monogenic disorders, while other tests are for genetic
variants found associated with increased susceptibility for common and
complex diseases in large-scale population studies. Through its Public
and Professional Policy committee followed by member and expert
consultation, the European Society of Human Genetics has developed the
following policy on advertising and provision of predictive genetic
tests by such DTC companies: (1) clinical utility of a genetic test
shall be an essential criterion for deciding to offer this test to a
person or a group of persons; (2) laboratories providing genetic tests
should comply with accepted quality standards, including those
regarding laboratory personnel qualifications; (3) information about
the purpose and appropriateness of testing should be given before the
test is done; (4) genetic counselling appropriate to the type of test
and disease should be offered; and for some tests psychosocial
evaluation and follow-up should be available; (5) privacy and
confidentiality of sensitive genetic information should be secured and
the data safely guarded; (6) special measures should be taken to avoid
inappropriate testing of minors and other legally incapacitated
persons; (7) all claims regarding genetic tests should be transparent;
advertisement should be unbiased and marketing of genetic tests should
be fair; (8) in biomedical research, health care and marketing,
respect should be given to relevant ethical principles, as well as
international treaties and recommendations regarding genetic testing;
and (9) nationally approved guidelines considering all the
above-mentioned aspects should be made and followed.</blockquote>


--
Steven C. Perkins      
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Online Journal of Genetics and Genealogy
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