HUM-MOLGEN archive: ETHI: multiplex screening/curricula

1 Reply to the suggestion of multiplex screening for rare diseases and two suggestions for curricula in genetic ethics.-HSG ed 1. From: Chris Friedrich <cfriedri@WELCHLINK.WELCH.JHU.EDU> Subject: Re: ETHI: multiplex screening > From: Gary Swergold <swergold@BOX-S.NIH.GOV> > > There is a very simple and important need for multiplex genetic screening > that has so far gone un-noticed here. > The cost of screening for rare disorders is very high, partly because each > test must be run separately. In other words, there is a set up cost for > every test whether one is doing one test or 50 tests. If one could combine > the tests for 50 people, each with a separate rare disorder, the set up > cost for each of them would go down and the cost of testing for rare > disorders would become more economical. > Gary Swergold M.D., Ph.D. > Food & Drug Administration > Center for Biologics Evaluation & Research > Division of Cell & Gene Therapy Regulation > EMail: swergold@box-s.nih.gov This would only be true if the cost of testing the other 49 subjects for 49 conditions, for which there is no clinical suspicion, is less than the costs of testing 50 persons for one condition each. I'm not aware of any cost studies, or cost-benefit analyses to prove this. Also, the counselor providing the pre- and post-test counseling would have to provide counseling for 50 conditions, in the unlikely event a subject had an unexpected positive result for one of the other 49 conditions. Chris Friedrich, M.D., Ph.D. Voice (410) 614-2521 Lipid Research-Atherosclerosis Unit Fax (410) 955-1276 Dept. of Pediatrics, CMSC 6-104 Voice mail (410) 614-1030 Johns Hopkins University School of Medicine 600 North Wolfe Street Baltimore, MD 21287 ***************************************************************************** ************** 2. From: David Beck <dabeck@UMDNJ.EDU> Dr. Rossi raised the question on December 4 as to whether there are bioethics curricula in existence. I recently became aware of an excellent program prepared by the New Jersey Association for Biomedical Research in collaboration with Videodiscovery, Inc. Jayne Mackta of NJABR has prepared a videodisc and accompanying printed documentation of "real life issues in Biology, Genetics, and Biomedical Technology." The program is geared to the secondary school level, but it done so well and in sucha sophisticated manner that it could easily be adapted to other settings. NJABR can be reached at 908-355-4456, email emurphy@llnj.ll.pbs.org -- David P. Beck Internet:dabeck@umdnj.edu Coriell Institute for Medical Research & Voice:609-757-4820 University of Medicine and Dentistry of New Jersey Fax:609-964-0254 ***************************************************************************** ***** From: Michael B Holland <bubbaone@MED.UNC.EDU> There is an excellent bioethics course taught at UNC Chapel Hill. The administrator is Dr. Cordiero-Stone in the Dept. of Pathology. The Phone number is 919-966-1396 or 1397, Fax 966-5046. Good luck. Michael Holland, PhD Pathology UNC CH