Ethical Aspects of Genetic Screening in Israel

Sagi, Michal

doi:10.1017/s0269889700003112

Cited by 14 publications

(4 citation statements)

References 23 publications

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“…This prevents the ultraorthodox Jews (about 15% of the population [Cohen et al, unpublished data]) from undertaking prenatal diagnosis, even for serious conditions such as Tay‐Sachs disease, or from participating in national carrier screening programs available in Israel. This community developed an alternative program named Dor Yeshorim for the prevention of severe genetic disorders by testing all youngsters for the most prevalent diseases and preventing marriages between carriers [Broide et al, 1993; Sagi, 1998]. This unique program is applicable for this community because marriages are prearranged by the parents.…”

Section: Introductionmentioning

confidence: 99%

Genetic testing for hearing loss: Different motivations for the same outcome

Dagan

Hochner

Levi³

et al. 2002

Am. J. Med. Genet.

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The recent discoveries of genes involved in deafness open new options for families and individuals with hearing loss. Our aim was to learn if parents of children with hearing loss will benefit from these new possibilities. A total of 139 parents answered questionnaires aimed at evaluating their intentions as well as their reasons to opt for or against genetic testing and prenatal diagnosis for hearing loss. A very high interest (87%) in genetic testing was found among Israeli Jewish parents of deaf and hard-of-hearing children. Although the Jewish population in Israel is very diverse in its religious beliefs, this high interest was similar across all religious sectors (secular, traditional, orthodox, and ultraorthodox); however, some of the reasons for undertaking such a test were very different between them. Reasons related to family planning and prenatal diagnosis were significantly less important to parents from the ultraorthodox sector, but the possibility to utilize genetic testing for matchmaking the children with hearing loss and their hearing siblings was an important factor in motivating them to undertake the test. Parents from all religious sectors wished testing would shed light on the cause of the hearing loss. We conclude that genetic testing would be welcomed by a wide range of communities, including those that usually do not apply for genetic counseling and testing, if it is offered in accordance with their cultural norms and beliefs.

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Section: Introductionmentioning

confidence: 99%

Genetic testing for hearing loss: Different motivations for the same outcome

Dagan

Hochner

Levi³

et al. 2002

Am. J. Med. Genet.

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“…Ethanol and the sediment was removed and placed at room temperature until completely dry deposition. The precipitate was dissolved in 20μl sterile water and at a later stage, the concentration of extracted RNA was determined [26][27][28][29][30].…”

Section: Total Rna Extraction Procedures Includesmentioning

confidence: 99%

Study of Genetics Mutations in HEXA Gene for Induced Tay-Sachs Disease in Human, Tabriz, Iran

Shahin¹

2017

OAJMB

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Tay-Sachs disease is one of the few neurodegenerative diseases of known causes. It results from mutations of the HEXA gene encoding the alpha subunit of beta-hexosaminidase, producing a destructive ganglioside accumulation in lysosomes, principally in neurons. With the determination of the protein sequence of the alpha and beta subunits, deduced from cDNA sequences, the complex pathway of sub cellular and lysosomal processing of the enzyme has been determined.More recently, detailed knowledge of the gene structure has allowed the determination of specific mutations causing Tay-Sachs disease. The high incidence of the disease in Ashkenazi Jews is attributed predominantly to three mutations present in high frequency, while in non-Jews some two dozen mutations have been identified thus far. The cataloguing of mutations has important implications for carrier screening and prenatal diagnosis for Tay-Sachs disease.

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“…Since in this community, marriages are arranged by the parents and termination of pregnancy is generally banned, the purpose of this program is to prevent marriages of two carriers (Bach et al 2007). Testing high school students and young adults is done anonymously, without any genetic counseling (Sagi 1998). The only information communicated is whether the potential match is "suitable" (meaning that the potential couple does not carry mutations in the same gene) and actual test results are not disclosed.…”

Section: Israeli Health Care System and Coverage Of Genetic Servicesmentioning

confidence: 99%

Genetic Counseling Services and Training of Genetic Counselors in Israel: An Overview

Sagi

Uhlmann

2013

Journal of Genetic Counseling

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Genetic counseling services have existed in Israel since 1964 and are available in almost all the major hospitals. Given the socialized healthcare system and small country size, genetic services are generally accessible and often free. The existence of founder mutations in various communities in Israel makes genetic testing easier to perform. Yet, the ethnic, cultural and religious diversity of the population has major implications on the design of the screening programs and the use of genetic services. The Israeli Association of Genetic Counselors (IAGC) was established in 2008 and had existed informally since 1989. There are two Master level genetic counseling training programs (6 students/class, 2 year program): Hebrew University-Hadassah Medical School (established in 1997) and the Technion (established in 2009). Genetic counselors' clinical training is largely observational and 2 years of supervised counseling sessions post degree are required for board exam eligibility. Genetic counselors are licensed and lead counseling sessions individually, but currently must work under medical geneticist supervision. This is the first article to summarize the history and training of Master level genetic counselors in Israel. Genetic services, coverage and regulations are also described.

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Ethical Aspects of Genetic Screening in Israel

Cited by 14 publications

References 23 publications

Genetic testing for hearing loss: Different motivations for the same outcome

Genetic testing for hearing loss: Different motivations for the same outcome

Study of Genetics Mutations in HEXA Gene for Induced Tay-Sachs Disease in Human, Tabriz, Iran

Genetic Counseling Services and Training of Genetic Counselors in Israel: An Overview

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