HUM-MOLGEN archive: ETHI: Genetic Couselors

Here are 4 more responses concerning genetic counseling and counselors. It seems the United States is creating qualified counselors at the rate of fewer than 100 per year. Yet there doesn't seem to be much of a demand for them. Are, or will there shortly be a lot of people in this country and elsewhere undergoing predictive or prenatal genetic testing without appropriate counseling? ************************************************************************* 1. From: "S.Robert Young" <N700053@UNIVSCVM.CSD.SCAROLINA.EDU> In so far as there has been this ongoing discussion about Genetic Counselors I thought I would give some specific information: The following is the list of U .S. Training Programs that were recently given Interim Accreditation by the Ame rican Board of Genetic Counseling (in parentheses following each program I'll a dd the number of 1994-5 students accepted according to a survey done by Becky B utler of U of Arkansas in Spring of 1994): U of Calif, Berkeley (8), Brandeis (?), U of Cincinnati (5), U of Colorado (8), Howard U (?), Indiana U (?), U of Calif, Irvine (4), U of Michigan (4), U of Minnesota (6), Northwestern U (?), S arah Lawrence College (25), U of South Carolina (8), U of Texas, Houston (4), M ed Coll of Virginia (?), U of Wisconsin (4), and U of Pittsburgh (12) -- The fo llowing programs were granted "Recognized New Program Status: Beaver College an d Johns Hopkins University/Natl Ctr for Human Genome Research. ---- I would li ke to take the opportunity to add two additional points: There is no question that many, many institutions and individuals would like to add on genetic couns elors but the existing positions are not there. I do not feel right in trainin g genetic counselors and then having them take jobs outside their field waiting for a position to open up. For the last two years our graduates just managed to find jobs (they did not have any choice of places). Also, if we are to trai n any additional counselors we're going to have to find outside funding. I tri ed to get a very, very modest increase in operating expense from my Dean this l ast week and was told that he couldn't justify spending any more on a program t hat sends 5 out of 6 of it's graduates to other states (and furthermore 5 of 6 students come from out of state so I think he's right). --- The need is there and it could easily become overwhelming overnight but the student slots and cur rently available job slots aren't there now. We'd love to train them if these gaps could be attended to. Sincerely, Bob Young,PhD Professor and Director, Univ South Carolina MS Training Program. ************************************************************************** 2. From: A D Stewart <gen6ads@SUN.LEEDS.AC.UK> Your answers to this query are not yet comprehensive ... As a university scientist who has worked in a National Health Service mol. gen. diagnostics laboratory, I have some knowledge of the UK system where there is a national network of regional genetics services. Scientists do not do counselling without specific training and employment as such. Theoretically, everyone has access to these services free of charge through referral from another specialist or their primary care physician (GP). This is not to say that provision is adequate to meet demand now, let alone in the future. These generally operate to high professional standards. There are also private set-ups promoting their tests, especially of course for paternity testing but also for prenatal Down's, etc., and even gender. As far as I know there is little or no regulation of these in terms of either the counselling provision or diagnostic precision. I know that there is also a comprehensive system in Germany, where there is great awareness of the ethical dimension. The insurance based system is highly regulated and insurers have to undertake to provide specified genetic tests by paying for such work as is undertaken in the many Human Genetic s departments in the Medical Schools (or by private organisations). The money follows the patients, in other words; but there must be others who are far better informed than I am about how this system works. **************************************************************************** From: Rolf Sijmons <R.H.Sijmons@MED.RUG.NL> 3. Just a little note to correct the small mistake made in the info by Peter Devile e, Leiden The Netherlands on the Dutch Clinical Geneticist training program. It takes 4 years in stead of the reported 2 years (and good results) to obtain the certified specialist degree Clinical Geneticist. The board is now considering ma king that 5 years by the way. Training includes laboratory training (DNA, cytoge netics, biochemistry of metabolic disease), but the main part of those 4 years i s dedicated to clinical diagnostic aspects (specific physical examination, syndr omal diagnosis, etc) and genetic counseling. ***************************************************************************** * 4. From: A D Stewart <gen6ads@SUN.LEEDS.AC.UK> The Department of Medical Genetics at St Mary's Hospital, University of Manchest er, runs an M.Sc in Genetic Counselling. Entry is very competitive! Best wishes, Alistair Stewart a.d.stewart@leeds.ac.uk Department of Genetics University of Leeds Leeds LS2 9JT England FAX (+44) 113 244 1175 PHONE (+44) 233 3108