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THE OJNA JOURNAL Issue 5 | Winter 2019 THE AMERICAN NURSES ASSOCIATION (ANA) WELCOMES THE ORTHODOX JEWISH NURSES ASSOCIATION (OJNA) AS THE LATEST ADDITION TO ITS LIST OF ORGANIZATIONAL AFFILIATES. full press release on page 26 Genetics Jewish Genetic BRCA and the The Ethics of Knowing Disorders Genetics of Cancer One's Genetic Risks Th e OJNA Journal - Page 1 Editor's Note TABLE OF OJNA LEADERSHIP Dear Members, CONTENTS: Jews are a fairly genetically isolated population. Due to the Mission: internal injunction against intermarriage and the external pressures of anti-semitism, the Jewish population has re- Th e mission of Th e OJNA Journal is to CANCER mained somewhat segregated from a genetic standpoint. • Provide timely news and research updates Th ese circumstances provide a remarkable opportunity for JEWISH GENETIC DISORDERS the study of genetic diseases, as well as the implementation page 4 • Relay evidence-based research of public health genetic initiatives and advances in the treat- ment of genetic disorders [1]. Th e Tay Sachs carrier screen- BRCA AND THE • Share OJNA news and updates ing program, which has reduced the disease by 90% in the Ashkenazi population [1], is widely considered a model for GENETICS OF CANCER page 11 Editor-in-Chief: how a successful genetic screening program can operate. THE ETHICS OF KNOWING ONE'S Chaya Milikowsky, MSN, AG-ACNP-BC Gaucher disease, also endemic to the Ashkenazi population, was the fi rst disease in which enzyme-replacement therapy GENETIC RISKS page 12 Managing Editor: was successfully utilized [1]. Even among the non-Mende- lian diseases, such as Parkinson’s disease and Crohn’s dis- Sarah Bracha Cohen, MS, RN ease, where multiple genes and the environment play a part in disease expression, the Jewish genetic tapestry provides page 2 OJNA EDITORIAL MESSAGE Editorial Board: a rich environment to study the genetic underpinnings of these diseases and to develop genetically driven treatments. Tobi Ash, MBA, BSN, RN page 3 ISSUE AT A GLANCE It is no surprise then, that as Orthodox Jews, we have an Toby Bressler, PhD, RN, OCN ingrained familiarity and intimacy with our genes and ge- page 4 FEATURE ARTICLE nome. Tzippy Newman, BSN, RN page 8 RESEARCH RECAP In our role as nurses, we are uniquely positioned to bridge Yocheved Weinreb, RN, OCN the gap between genetics research and successful adoption page 16 MEMBER MILESTONES into practice [2]. Interestingly, it was not until 1998 that Board of Directors: genetics was fi rst recognized as a nursing specialty, and it page 18 OJNA EVENTS Shevi Rosner, MSN, RN-C, President was only in June 2008 that the American Association of Col- leges of Nursing developed “Th e Essentials of Genetic and page 20 NURSES TO KNOW Toby Bressler, PhD, RN, OCN, Vice President Genomic Nursing: Competencies, Curricular Guidelines, page 21 CAREERS TO CONSIDER Mara McCrossin, MSN, NP, Treasurer and Outcome Indicators” to integrate genetics and genomics education into its list of essential education for baccalaureate page 22 NURSES OF OJNA Chaya Milikowsky, MSN, AG-ACNP-BC, Secretary prepared professional nurses [3]. Because of the delayed en- RECOMMEND tree the nursing profession has taken into the fi eld of genet- All advertising is subject to the approval of OJNA. ics and genomics, nurses may have inadequate understand- page 23 JOB POSTINGS ing of the relevance genetics plays in nursing and healthcare, OJNA Mission Statement: and may be unable to apply it to their nursing practice. Yet page 24 OJNA NEWS nurses need to be competent in obtaining thorough family Th e Orthodox Jewish Nurses Association was histories to identify red fl ags and markers of genetic disor- page 26 ANA PRESS RELEASE founded in 2008 by Rivka Pomerantz, BSN, RN, ders, recognize the potential for genomics-infl uenced drug page 27 MUSINGS IBCLC. It seeks to provide a forum to discuss profes- reactions, clearly explain the results of genetic tests, and to know when to refer patients to genetic specialists [2,4]. sional issues related to Orthodox Jewish nurses and Th e medical world is swift ly moving towards personalized arrange social and educational events. We strive to medicine in which an individual’s genetic and genomic in- meet the needs of our members, promote profes- formation can help determine his susceptibility to diseases, sionalism and career advancement, and be a voice guide screening decisions, choose treatments tailored to maximize successful outcomes, and avoid adverse drug reactions. Nurses need to be at the forefront of this changing healthcare for Orthodox Jewish nurses across the world. arena. Our Jewish heritage gives us the background and our nursing practice provides the Contact us at [email protected] impetus. Join me in this exploration of genes as they interplay with medicine, history, and the future. Follow us! Best, @jewish_nurses Chaya Milikowsky, MSN, AG/ACNP-BC Orthodox Jewish Nurses Association (OJNA) Editor-in-Chief, The OJNA Journal @JewishNurses References: [1] Ostrer, H. & Skorecki, K. (2013). Th e population genetics of the Jewish people. Human Genetics, 132: 119-127. doi: 10.1007/s00439-012-1235-6 www.jewishnurses.org [2] Montgomery, S. (2017). Genetics in the clinical setting. American Nurse Today, retrieved on 9/25/19 from https://www.americannursetoday.com/genetics-clinical- setting/ [3] American Nurses Association Consensus Panel on Genetic/Genomic Nursing Competencies (2009). Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd Edition. Silver Spring, MD: American Nurses Association [4] Calzone, K.A., Cashion, A., Feetham, S., Jenkins, J., Prows, C.A., Williams, J.K., & Wung, S.F. (2010). Nurses transforming health care using genetics and genomics. Th e OJNA Journal - Page 2 THIS ISSUE AT A GLANCE: [T]HE ABILITY TO ENGINEER VACCINES THAT However, just because WE CAN make INDUCE A GREATER PERCENTAGE OF ROBUST “designer babies” does not mean that IMMUNE RESPONSE WHILE SIMULTANEOUSLY REDUCING THE RISK OF ADVERSE EVENTS WE SHOULD, ethically or IS AN EXCITING PROSPECT. halachically. page 8 page 14 To date, there are more More than 46% of Kohanim can trace their paternal lin- than 40 genetic, eage back to a single male from over 3,000 years ago. page 17 endocrine, and metabolic disorders A founder mutation (or effect or variant) occurs when that are tested for in there is a genetic alteration caused by an ancestor carrier the NBS program" of an altered gene in an isolated group" page 25 Gene Therapy may one IN 22 STATES, NPS HAVE Back then, I wished that day be the cure FULL PRESCRIPTIVE AND there was someone PRACTICE AUTHORITY TO THE for TSD and similar to guide me and FULL EXTENT OF THEIR LICENSE diseases page 9 who perhaps may have WITHOUT COLLABORATION had experiences similar WITH ANY OTHER PROVIDER to mine. page 25 in certain ethnic groups, page15 such as Ashkenazi Jews, mutations in ...identifi ed four regions on the genome that appear to be the BRCA1 and BRCA2 highly infl uential in determining left-handedness page 9 cancer susceptibility genes are more IT’S AN ETHICAL DILEMMA, BUT FOR NOW, prevalent page 11 I WOULD RATHER NOT KNOW. page 12 Th e OJNA Journal - Page 3 Genetic Disorders Affecting the Ashkenazi Population Tobi Ash, MBA, BSN, RN Genes somes or mitochondria. [3] mosomes and aff ected males have Th e Talmud discusses hereditary an extra X chromosome). [3] diseases including hemophilia, epi- What makes you, you? Your genes. Th ere are thousands of disorders lepsy, and leprosy [7]. While there Every human has a unique genetic related to single gene inheritance. Mitochondrial Inheritance have been some in Jewish commu- code made of genes. Genes are the Also known as Mendelian or mono- Mitochondrial disorders occur nities that were fearful of genetic basic physical and functional unit genetic inheritance, single gene in- when the non-nuclear DNA of testing due to concerns about medi- of heredity and are made of DNA. heritance occurs when a mutation the mitochondria develops muta- cal racism and the threat of eugen- Each gene ranges from a few hun- or change happens in the DNA se- tions. Examples of mitochondrial ics, the overall goal of identifying dred DNA bases to more than 2 quence of a single gene. Single gene disorders include myoclonic epi- people at risk of either being born million. A human being has be- inheritance disorders can be autoso- lepsy and Leber’s hereditary optic with or developing a genetic disease tween 20,000 to 25,000 genes. Each mal dominant, autosomal recessive, atrophy. [3] in the future propelled modern ge- person inherits two copies of each or x-linked. Autosomal dominant netic testing programs [8]. gene, one copy from the mother disorders occur when one copy of a Medical Genetic History of Jews and the other from the father. Most defective gene is passed from either Jews are a religious and ethnic Th ere are approximately 10 million of our genes are the same; less than parent to the child. Individuals with group who originated in the Middle Ashkenazi Jews in the world today one percent of genes diff er between autosomal recessive disorders inher- East more than 4,000 years ago. with close to 3 million living in Is- people. Th ese diff ering components it two copies of a defective gene, one Although Jews originated in the rael. Ashkenazi Jews descend from are known as alleles. Alleles are from each parent. X-linked disor- Middle East, the historical exiles of a small number of founders with a forms of the same gene but with ders are those where defective genes Jews from their homeland meant strong tradition of marriage within small diff erences in their DNA bas- are passed on from the mother to her that almost all Jewish populations their own community (endogamy).
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