Judaism, Genetic Screening and Genetic Therapy Part 2
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Mishpacha-Article-February-2011.Pdf
HANGING ON BY A FRINGCOLONE:EL MORDECHAI FRIZIS’S MEMBERS COURAG THEEOUS LA SRESPONSET ACT OF THE TRIBE? FOR HIS COUNTRY OPEN MIKE FOR HUCKABEE SWEET SONG OF EMPATHY THE PRESIDENTIAL HOPEFUL ON WHAT FUELED HIS FIFTEENTH TRIP TO ISRAEL A CANDID CONVERSATION WITH SHLOIME DACHS, CHILD OF A “BROKEN HOME” LIFEGUARD AT THE GENE POOL HIS SCREENING PROGRAM HAS SPARED THOUSANDS FROM THE HORROR OF HIS PERSONAL LOSSES. NOW DOR YESHORIM’S RABBI YOSEF EKSTEIN BRAVES THE STEM CELL FRONTIER ON-SITE REPORT RAMALLAHEDUCATOR AND INNOVATOR IN RREALABBI YAAKOV TIME SPITZER CAN THES P.TILLA. FORM LIVA FISCESALLY RSOUNDAV STATE?WEI SSMANDEL’S WORDS familyfirst ISSUE 346 I 5 Adar I 5771 I February 9, 2011 PRICE: NY/NJ $3.99 Out of NY/NJ $4.99 Canada CAD $5.50 Israel NIS 11.90 UK £3.20 INSIDE The Gene Marker's Rabbi Yosef Ekstein of Dor Yeshorim Vowed that No Couple Would Know His Pain Bride When Rabbi Yosef Ekstein’s fourth Tay-Sachs baby was born, he knew he had two options – to fall into crushing despair, or take action. “The Ribono Shel Olam knew I would bury four children before I could take my self-pity and turn it outward,” Rabbi Ekstein says. But he knew nothing about genetics or biology, couldn’t speak English, and didn’t even have a high school diploma. How did this Satmar chassid, a shochet and kashrus supervisor from Argentina, evolve into a leading expert in the field of preventative genetic research, creating an Bride international screening program used by most people in shidduchim today? 34 5 Adar I 5771 2.9.11 35 QUOTES %%% Rachel Ginsberg His father, Rabbi Kalman Eliezer disease and its devastating progression, as Photos: Meir Haltovsky, Ouria Tadmor Ekstein, used to tell him, “You survived by the infant seemed perfect for the first half- a miracle. -
CARRIER SCREENING: POPULATION DIFFERENCES, STIGMA, and the SPECTER of Co-Authored with EUGENICS Stephen Pemberton Tay Sachs KEITH WAILOO, PH.D
CARRIER SCREENING: POPULATION DIFFERENCES, STIGMA, AND THE SPECTER OF Co-authored with EUGENICS Stephen Pemberton Tay Sachs KEITH WAILOO, PH.D. Disease Martin Luther King Jr. Professor Cystic Fibrosis RUTGERS UNIVERSITY Sickle Cell Disease DEPARTMENT OF HISTORY INSTITUTE FOR HEALTH, HEALTH CARE POLICY, AND AGING RESEARCH RESEARCH SUPPORTED BY: ETHICAL, LEGAL, AND SOCIAL ISSUES (ELSI) PROGRAM, NHGRI; and THE JAMES S. MCDONNELL FOUNDATION Lessons of the Past: • Balancing the screening interests of individuals, communities, and society? The importance of historical sensitivity and cultural competence among health practitioners who engage in screening • How to target screening to distinct populations? The challenge of “hidden” versus obvious subpopulations. One-size does not fit all; how screening relates to group values and concerns • In health care, knowing when screening is not the answer for some populations. Other goals: treatment and extension of life, relief. The importance of competent screening programs among populations whose group identities are invested in the maintenance of values that are distinctively different than that of the majority culture. TODAY: ONE HISTORICAL CASE STUDY (TAY-SACHS DISEASE), WITH SICKLE CELL DISEASE AND CYSTIC FIBROSIS AS BACKDROP CONTROVERSIES in CARRIER SCREENING, STIGMATIZATION, AND POPULATION – the case of sickle cell disease • LINUS PAULING 1968: “I have suggested that there should be tatooed on the forehead of every young person a symbol showing possession of the sickle cell gene or whatever other -
The Model of Ki Gadal Meod Are Officially Excluded As a Source of Hashem’S Blessing by Mr
בס"ד קול תורה Parashat Toledot 4 Kisleiv 5781 November 20, 2020 Vol. 30 No. 9 then specifies, “Yatzeu Peradot,” “except for mules.” Here, mules The Model of Ki Gadal Meod are officially excluded as a source of Hashem’s blessing By Mr. Chanan Strassman (presumably due to their sterility). Furthermore, the same mules which made Rebbe's stable-boy wealthy are also featured in an When a famine strikes, Hashem tells Yitzchak Avinu to unflattering story. The Gemara (Chullin 7b) relates that Rebbe remain in Gerar and bestows a blessing of prosperity upon invited Rav Pinchas ben Yair to dine at his home, but Rav Pinchas him. The Torah writes that “Vayizra Yitzchak Ba’Aretz HaHi vehemently refused upon discovering that Rebbe owned white VaYimtza BaShanah HaHi Me’ah Shearim VaYevaracheihu Hashem. mules. He said, “The Angel of Death is in this one’s house, and I VaYigdal Ha’Ish VaYeilech Haloch VeGadeil Ad Ki Gadal Meod VaYehi would eat a meal with him?!” Rashi (ibid s.v. Malach HaMavet) Lo Mikneh Tzon UMikneh Vakar VaAvudah Rabbah VaYekanu Bo explains that Rav Pinchas aligned Rebbe’s mules with the Malach Pelishtim,” “Yitzchak sowed in the land and reaped a hundred- HaMavet because they inflict fatal injuries. Essentially, mules are fold in that year. And Hashem blessed him, and the man became considered harbingers of death who cannot bring divine greater and greater until he was very great, and he acquired blessing. It is therefore perplexing that Rashi would implicate flocks and herds and a large household until the Pelishtim envied them in Yitzchak Avinu’s great stature. -
Carrier Screening Panels for Ashkenazi Jews: Is More Better? Jennifer R
March 2005 ⅐ Vol. 7 ⅐ No. 3 article Carrier screening panels for Ashkenazi Jews: Is more better? Jennifer R. Leib, MS1,2, Sarah E. Gollust, BA3,4, Sara Chandros Hull, PhD3,4, and Benjamin S. Wilfond, MD3,4 Purpose: To describe the characteristics of Ashkenazi Jewish carrier testing panels offered by US Laboratories, including what diseases are included, the labels used to describe the panels, and the prices of individual tests compared to the prices of panels for each laboratory. Methods: GeneTests (http://www.genetests.org) was searched for laboratories that offered Tay-Sachs disease testing. Information was obtained from laboratory web sites, printed brochures, and telephone calls about tests/panels. Results: Twenty-seven laboratories offered up to 10 tests. The tests included two diseases associated with death in childhood (Niemann-Pick type A and Tay-Sachs disease), five with moderate disability and a variably shortened life span (Bloom syndrome, Canavan disease, cystic fibrosis, familial dysautonomia, Fanconi anemia, and mucolipidosis type IV), and two diseases that are not necessarily disabling or routinely shorten the lifespan (Gaucher disease type I and DFNB1 sensorineural hearing loss). Twenty laboratories offered a total of 27 panels of tests for three to nine diseases, ranging in price from $200 to $2082. Of these, 15 panels cost less than tests ordered individually. The panels were described by 24 different labels; eight included the phrase Ashkenazi Jewish Disease or disorder and six included the phrase Ashkenazi Jewish Carrier. Conclusion: There is considerable variability in the diseases, prices, and labels of panels. Policy guidance for establishing appropriate criteria for inclusion in panels may be useful to the Ashkenazi Jewish community, clinicians, and payers. -
The Rabbi Naftali Riff Yeshiva
AHHlVERSARtJ TOGtTHtR! All new orden will receive a Z0°/o Discount! Minimum Order of $10,000 required. 35% deposit required. (Ofter ends February 28, 2003) >;! - . ~S~i .. I I" o i )• ' Shevat 5763 •January 2003 U.S.A.$3.50/Foreign $4.50 ·VOL XXXVI/NO. I THE JEWISH OBSERVER (ISSN) 0021-6615 is published monthly except July and August by the Agudath Israel of America, 42 Broadway, New York, NY10004. Periodicals postage paid in New York, NY. Subscription $24.00 per year; two years, $44.00; three years, $60.00. Outside ol the United States (US funds drawn on a US bank only) $12.00 surcharge per year. Single copy $3.50; foreign $4.50. POSTMASTER: Send address changes to; The Jewish Observer, 42 a.roadway, NY. NY.10004. Tel:212-797-9000, Fax: 646-254-1600. Printed in the U.S.A. KIRUV TODAY IN THE USA RABBI NISSON WOLPIN, EDITOR EDITORIAL BOARD 4 Kiruv Today: Now or Never, Rabbi Yitzchok Lowenbraun RABBI JOSEPH ELIAS Chairman RABBI ABBA BRUONY 10 The Mashgiach Comes To Dallas, Kenneth Chaim Broodo JOSEPH FRIEOENSON RABBI YISROEL MEIR KIRZNER RABBI NOSSON SCHERMAN 16 How Many Orthodox Jews Can There Be? PROF. AARON TWEASKI Chanan (Anthony) Gordon and Richard M. Horowitz OR. ERNST L BODENHEIMER Z"l RABBI MOSHE SHERER Z"L Founders 30 The Lonely Man of Kiruv, by Chaim Wolfson MANAGEMENT BOARD AVI FISHOF, NAFTOLI HIRSCH ISAAC KIRZNER, RABBI SHLOMO LESIN NACHUM STEIN ERETZ YISROEL: SHARING THE PAIN RABBI YOSEF C. GOLDING Managing Editor Published by 18 Breaking Down the Walls, Mrs. -
Kuntres K'sheleg Yavinu the Laws of Snow on Shabbat
Kuntres K’Sheleg Yavinu The Laws of Snow on Shabbat Prepared by Rabbi David Pardo JLIC at Brandeis Note: This Kuntres tries to straddle the line between concise and comprehensive. To that end, the “final answer” is underlined. Please consult me for any further questions at [email protected]. Original sources appear in footnotes where it was convenient to do so. Is snow muktzeh? ● Well, for starters, rain is not. The reasoning that it is nolad -- something newly created on Shabbat -- is deflected by the conclusion of the gemara (Eruvin 46a, Mishna Berura 338:301). ● This should logically apply to snow. Thus the clear majority of authorities are lenient (cf. R. Moshe Stern, Be’er Moshe 1:20; R. Yehoshua Neuwirth, Shemirat Shabbat Ke-Hilkheta, ch. 16:44 n. 110 and 15:36 in the name of Rav Shlomo Zalman Auerbach and Rav Tzvi Pesach Frank; Har Tzvi, Soser; Harav Y.S. Elyashiv, Shalmei Yehudah, pg. 203, also the position of Rav Ovadia Yosef). ● R Moshe Feinstein alone stands up against snow (Igrot Moshe O.C. 5:22:372, quoted in The Halachos of Muktza, p. 165 n. 10). ○ It is not clear why Rav Moshe does not equate snow and rain. Rav Aviner suggests that it could because of meteorological differences in the creation of snow and rain, but rejects the approach anyway. Can I walk on snow (imprint of my shoe i.e. kotev / unavoidable nominal snow crushing)? ● Yes (SA OC 320:13)3 ○ The Mishna Brura ad loc explains the reason: eino mitkaevn, and adds the Taz: since it is impossible to “be careful,” Hazal never decreed a gzeira against it. -
JEWISH OBSERVER {ISSN) Ool!J-6Gl5 LS Pllbusih:O MO"Itllly J.:XCF.L't J111.Y & Allg!IST by !"!IE AGUOATH IS RAEL of AMERICA 4\! L~ROAOWAY, NEW YORK, NY !OOOJ
• The ribbon, It's America's symbol for an urgent cause. first, there were pink ond purple ribbons to support medical research. Then, as our brave troops departed for distant shores, the yellow ribbons, and the red, white and blue, appeared everywhere. To that, we add the green Cucumber ribbon to support our kin.111 troops fighting for Ooroh's vital cause - saving Jewish neshamos. So display your green ribbon with pride. It's another important way to show you care. 1. • To get your free Cucumber ribbon dial extension 6038. f you were one of the 100.000+ participants at the Eleventh Siyum HaShas of Oaf Yomi here is your chance to relive that unforgettable expe Irience through a collection of CD ROMs. capturing all of the inspiring moments of the Siyum. f you were not fortunate to attend. you can now feel that awesome expe rience by seeing and hearing the inspiring words of our gedolim. and Icapture the excitement that so many witnessed and enjoyed. This commemorative five CD ROM set encased in an attractive customized binder. has been produced by popular request and is available for $39. 99 per set (plus $5.00 per set postage and handling.) Order Now! You'll treasure this historic event for years to come. An excellent gift item - order extra sets for friends and family! To: OAF YDMI COMMISSION • AGUDATH ISRAEL OF AMERICA • 42 Broadway. New York. NY 10004 Please send me set(s) of the Eleventh Siyum HaShas of Dal Yomi Commemorative CD ROM set. Iam enclosing a contribution of $39.99 for each set ordered • (plus $5.00 per set for postage and handling [USA addresses only]). -
Fuzzy Logic and Preconceptional Genetic Carrier Screening-Revised
Issue 1/2014 2341-0183 Fuzzy%Logic%and%Preconceptional%Genetic% Carrier%Screening! ! Julia&Inthorn1! 1!Institute!for!Medical!Ethics!and!History!of!Medicine,!Göttingen!University!Medical!Centre,!Germany! and!Centre!for!Research!Ethics!and!Bioethics,!Uppsala!University,!Sweden! ! Email:[email protected]! Abstract Medical(screening(programs(have(been(established(based(on(the(idea(of(early(treatment(and( prevention.( The( selection( of( tests( as( well( as( the( diseases( tested( for( that( are( included( in( a( screening( need( to( be( ethically( justified.( This( article( looks( at( criteria( for( screening( such( as( severity( of( a( disease( and( efficiency( of( a( test( and( their( applicability( for( newly( developed( preconceptional( genetic( carrier( screening.( Preconceptional( genetic( carrier( screening( can( be( used(by(couples(planning(a(pregnancy(in(order(to(learn(it(they(are(both(carriers(of(a(recessive( inherited(diseases(und(thus(have(an(increased(risk(of(having(an(affected(child.(It(is(argued(that( introducing( fuzzy( logic( helps( to( overcome( a( binary( logic( of( ethical( decisions( and( to( discuss( ethical( problems( connected( to( the( selection( of( diseases( for( preconceptional( genetic( carrier( screening( in( a( more( nuanced( way.( With( ongoing( research( about( the( relationship( between( genotype(and(phenotype(as(well(as(current(development(of(new(genetic(screening(methods(the( selection(of(tests(and(diseases(will(have(to(deal(with(knowledge(deficits(which(fuzzy(logic(can( help(to(handle.((( Submitted:!20/02/14.!Accepted!and!Published:!29/04/14 !Inthorn: Fuzzy Logic and Preconceptional! ! Genetic! Carrier Screening! !! APHSC 1:2014 DOI tbp – http://www.aphsc.org Page 1 of 10 © 2014 by the Authors; licensee ECSC. -
Optional Ashkenazi Panel Brochure
בס’’ד Fulfilling Our Responsibility To The Next Generation A VITAL PROGRAM THAT SAVES LIVES! The Dor Yeshorim mission: For over 30 years, Dor Yeshorim has successfully prevented the occurrence of genetic diseases in our NOW AVAILABLE: families. Since 1983, Dor Yeshorim with Hashem’s help NEW PANEL OF TESTS has successfully prevented genetic diseases from affecting our Jewish Community by conducting mass screenings in high schools, colleges, universities, FOR SEVEN ADDITIONAL yeshivas and seminaries worldwide- throughout the United States, Israel, Canada, Europe, and countless other orthodox Jewish communities. DEVASTATING AND The Dor Yeshorim genetic screening program was established to provide protection from Jewish genetic diseases, while safeguarding individuals from the potentiallY FatAL psychological stigma associated with knowing their carrier status. DISEASES To date, approximately 375,000 individual genetic screening tests have been performed, and nearly 2,000 potential couples have been spared the List of Diseases: agony of giving birth to a child or children with a 1. Bardet–Biedl Syndrome Type 2 (BBS2) devastating or fatal genetic disease. The birth of a sick child not only impacts the parents of this child 2. Nemaline Myopathy (NM) but also the siblings, grandpare nts and the extended 3. Dihyrolipoamide Dehydrogenase Deficiency (DLDD) family. B’H Dor Yeshorim has been able to spare over 4. Usher Syndrome Type 1 (USH1) 2,000 families the hardships associated with having such a child. 5. Joubert Syndrome (JBTS) DY benefits from -
Finding Utility for Genetic Diagnostics in the Developing World
Finding Utility for Genetic Diagnostics in the Developing World By Ridhi Tariyal B.S. Industrial Engineering, Georgia Institute of Technology (2002) M.B.A. Harvard Business School (2009) SUBMITTED TO THE HARVARD - MIT DIVISION OF HEALTH SCIENCES AND TECHNOLOGY IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREES OF MASTERS OF SCIENCE IN HEALTH SCIENCES AND TECHNOLOGY ARCHNES at the 4ASSACHUETFS ONS ITUTEj OF TFc, ooG MASSACHUSETTS INSTITUTE OF TECHNOLOGY MAR 9 1 2 11 September 2010 L @2010 Ridhi Tariyal. All rights reserved. IRARIES The author hereby grants MIT permission to reproduce and distribute publicly paper and electronic copies of thisthesis document in whole or in part. Signature of Author:"' H ard-MIT Division of Health $ciences and Technology, August 2010 Certified by: George Church Professor of Ge tics, Harvard Medical School, Director of the Center for Computational Genetics Thesis Supervisor Certified by: -Z-_==: - - Stan Lapidus Senior Lecturer, MIT Sloan School of Management Thesis Supervisor Accepted by: Ram Sasisekharan, PhD/Director, Harvard-MIT Division of Health Sciences and Technology/Edward Hood Taplin Professor of Health Sciences & Technology and Biological Engineering. ACKNOWLEDGEMENTS The idea behind this thesis was born in 2006 when I was working for a big pharmaceutical company and reading about the progress in genetics. I found myself spending more time thinking about the advances and challenges in the personalized medicine space than the immediate tasks and challenges in my employment. Since then, it has been a pleasure to move slowly but surely towards aligning my personal interests with my academic and professional pursuits. I would like to thank my classmates in school, my wonderful professors and my friends and family for brainstorming with me, encouraging me, answering endless questions about very personal genetic choices and offering unwavering support in this journey. -
Israel: Motherland and Mother Rabbi Mordechai Torczyner Focus of the Biblical Universe, Cradle of It Only Produced the Latter
בס“ד Parshat Bechukotai (Diaspora) 27 Iyar, 5779/June 1, 2019 Vol. 10 Num. 36 (#414) Our Evening of Tribute is Tuesday evening June 25, celebrating Ten Years of our Beit Midrash! For more information and to make a contribution, please go to www.torontotorah.com/dinner19 Israel: Motherland and Mother Rabbi Mordechai Torczyner Focus of the biblical universe, cradle of it only produced the latter. (Bereishit remember Avraham, Yitzchak, Yaakov our nation, throne of King David’s Rabbah 5:9) The concept of territorial and “The Land”. Rabbi Teichtel theocentric empire, haven from our consciousness continued as the sages commented, “It is written (Vayikra foes, coordinate at which our mitzvot envisioned stones desiring to serve 26:42), ‘And I will remember My are most practical and practicable, righteous Yaakov. (Talmud, Chullin covenant with Yaakov, and also My host of our most palpable connection 91b) Many more classic sources ascribe covenant with Yitzchak, and also My to the world of the spirit, terraced hills consciousness to a range of inanimates. covenant with Avraham I will remember, across which the plangent Divine Certainly, at least some of these texts and the land I will remember.’… Rashi declaration, “Here I will dwell, for I are meant to provide moral instruction there wrote, ‘Why are they listed in have desired her (Tehillim 132:14)” still rather than to describe ex-cerebrum reverse? As if to say: Yaakov the echoes – Israel has been all of these for thought processes. Nonetheless, the youngest is worthy of this, and if he is the genetic and spiritual heirs of identity of Israel as thinking and not worthy then Yitzchak is with him, Avraham and Sarah. -
Guide to Traditional Jewish Observance in a Hospital Ohkujv ,Hcc Ohtmnbv Ohkujk Lhrsn
Guide to Traditional Jewish Observance in a Hospital ohkujv ,hcc ohtmnbv ohkujk lhrsn By Rabbi Jason Weiner Cover art: Part of the “Jewish Contributions to Medicine” mural by Terry Schoonhover. Commissioned for Cedars-Sinai and on permanent display in the Harvey Morse Auditorium. Courtesy of Cedars-Sinai. Guide to Traditional Jewish Observance in a Hospital ohkujv ,hcc ohtmnbv ohkujk lhrsn By Rabbi Jason Weiner © 2012 - Jason Weiner – All rights reserved. ,nab hukhgku rfzk Dedicated in Loving Memory of v’’g cegh icutr rwwc ohhj kthrt wr Ariel Avrech A”H /v/c /m/b/, By his Beloved Grandparents Rabbi Philip Harris Singer k"mz and Mrs. Celia Singer Dedicated by awwung van rwwc ktezjh wr ~ Howard Hyzen In Honor of his Beloved Wife Claire Hyzen whjha u,tuprku u,ufzk uhvh ukt vru, hrcsu uck ,csb Table of Contents Letters of Approbation .................................................... 9 Introduction ............................................................ 14 I. Categories of Illness .................................................... 17 A. Minor Ailments .....................................................17 B. Incapacitating and Life-Threatening Illnesses ............................17 II. Shabbat .............................................................. 21 A. Dangerously Ill Patient on Shabbat/Holidays – General Principles ..........21 B. “Shinui” Doing a Shabbat labor in an awkward, backhanded manner ........24 C. “Amira L’Akum” Asking someone who is not Jewish to violate Shabbat .......25 D. Use of Electricity ....................................................25