Abstract
The unique Israeli nation-wide programme of voluntary, free-of-charge programme of “population genetic screening for reproductive purposes” screens for “frequent and severe” genetic diseases. It is grounded in the observation that specific groups in Israeli population carry “founder mutations”: changes in DNA appearing with a high frequency in a given population. The Israeli enthusiasm for genetic testing and screening was linked with the Zionist ideology, traditional Jewish valorization of the family, a shared understanding of difficulties of life in Israel, fear of disastrous consequences of a pregnancy and, for some, also a lingering influence of eugenic ideas. This article proposes a somewhat different view. It argues that the development of state-sponsored genetic screening in Israel was to an important extent a result of a partly contingent encounter between a national ideology, a traditional Jewish respect for science – or for some the absence of a critical view of science – the development of new biomedical technologies, and the multilevel professional interests of physicians and geneticists: from curiosity and a wish to help mutation carriers – Jewish and non-Jewish – to have healthy children, to financial interests in the development of genetic testing and a widespread apprehension of juridical pursuits.
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Notes
We spoke with Ohad Birk, Rivka Carmi, Hagit Baris Feldman, Michal Sagi, Yossi Shilo, Shiri Shkedi, Yuval Yaron, Karl Skorecki, Joel Zlotogora and Shahar Zukerman. We are very grateful for their availability and generosity.
A few small subgroups, such as Jews from Ethiopia and most of the Bedouin of the Negev, are excluded from CF screening.
Ashkenazi Jews – Jews of European origin – are the largest ethnic group in Israel; more than half of Israeli Jews are considered Ashkenazi.
See Zlotogora, Carmi et al. (2009) and Zlotogora, van Baal et al (2009). The Golden Helix database used the ETHNOS software (cf. Baal et al, 2010).
“Law of Return 5710–1950, enabling Diaspora Jews to immigrate to Israel”, Israel, 1950. Orthodox Judaism defines a Jew as a person born to a Jewish mother or converted to Judaism by an orthodox rabbi.
Israeli courts clarified the definition of ‘Jew’ according to the return law and excluded (following a 1962 verdict in the case of Oswald Rufeisen, a Jew who converted to Christianity) those for example who converted to other religions from the legal definition of a Jew.
In Israel, as in other industrialized countries, genetic and genomics became commercialized and privatized enterprises (Lindee, 2016). At the same time, Israel has a relatively high level of malpractice claims: obstetricians and gynaecologists are especially affected by such claims (Asher et al, 2012, 2013).
Italics added. In his other writings also, Jacobs left open the question of whether the (presumed) unity of the ‘Jewish race’ is biological, sociocultural or both (Fishberg, 1911).
See also Goldschmidt (1963); on Goldschmidt, cf. Kirsh (2013).
Genetics studies frequently have political aims. For example, US Blacks use ancestry studies to create symbolic links with their lost past, in spite of the incompleteness of genetic data on black populations (Nelson, 2016).
In the 1950s and 1960s, the 1956 Suez campaign notwithstanding, Israel was often presented as a small, struggling country, which nevertheless had impressive technological and educational achievements. Reports on problematic aspects of the reception reserved for Jews from some Oriental edot in the 1950s surfaced only in the late 20th and early 21st centuries (see, e.g., Weiss, 2001).
Rafel Patai and Jennifer Patai Wing were among the first to contest the claim that 'Jewish pathologies' are proof of the biological unity of the Jews, giving as an example Tay–Sachs disease in non-Jewish populations (Patai and Patai, 1975, pp. 245–248).
On PKU as a paradigmatic genetic disease, see Paul and Brosco (2013).
See also Kaback (1973, 2001) and Lowden et al (1974). While the frequency of Tay–Sachs disease among Ashkenazi Jews diminished drastically in the 1980s and 1990s, its frequency among the Louisiana Cajuns and Canadian French – groups with similar frequencies of carriers of this disease – remained the same (Wailoo and Pemberton, 2006, p. 41).
On the history of genetic counselling in the US, see Stern (2012).
The estimate of gain provided by prenatal screening for CF assumed that the majority of women who learn that they carry a CF foetus would terminate the pregnancy (Ginsberg et al, 1994).
This trend was intensified in the 21st century. In 2015, a non-profit Jewish organization in the US disseminated a poster “Get to know your genes”, which affirmed that “between 25% and 50% screened Ashkenazi Jews are carriers of one or more Jewish genetic disease” (Young, 2015).
Other domains of medical activity in Israel, such as transplantation and the activities of fertility clinics are also weakly regulated.
For example, in the UK, SMA activists strongly resist prenatal testing for this condition (Boardman, 2014). In contrast, Aviad Raz argued that the majority of Israeli activists support genetic testing for the “prevention” of disability, although they tend to privilege PGD over selective abortion (Raz, 2004).
Joël Zlotogora is the leading figure in Israeli clinical genetics and population studies. He was till the end of February 2015 the head of the Department of Community Genetics at the Israeli Ministry of Health and a professor at the Hebrew University in Jerusalem.
The definition of what counts as eda or ‘group of origin’ can nevertheless be modulated and adapted to investigators’/public health experts' goals.
Some ethicists questioned the principle of a free state-sponsored treatment for all those with Gaucher disease (Gross, 2002).
See also Zlotogora, Carmi et al (2009). In 2008, the Ministry abolished the special centres for screening Tay–Sachs disease and integrated it within larger screening programmes; it also initiated a pilot educational programme on genetic diseases in high schools.
See also Rosner et al (2009). The 2013 law incorporated the Association's recommendations.
Disability rights activists, especially in the US, strongly oppose a description of the birth of a severely impaired child as a 'tragedy', arguing that such a view denies the value of life with disability. The Israeli geneticists we interviewed usually had little patience with such a view: their experiences of families with severely impaired children taught them otherwise.
According to some experts, nurses who provide information about genetic testing are often insufficiently informed about the scope and limitations of such testing. Experts are also divided in their appreciation of the extent of ‘inter-group’ marriages in the non-orthodox Jewish population in Israel. Some geneticists think that the notion of edot will soon disappear because many Israeli Jews marry outside their group of origin; Zlotogora believes that this division continues to be relatively stable, especially when dealing with larger ethnic groups: Ashkenazi mainly marry Ashkenazi and Oriental Jews other Oriental Jews.
There seems to be anecdotal evidence of (rare) secular families, who, when aware of the presence of a recessive genetic condition in the family, put pressure on a new partner of their child to be tested for the condition before the couple's relationship becomes ‘too serious’.
The Jewish religion views abortion as undesirable, but in specific circumstances perceives it as a lesser evil. For example, some rabbis consider abortion for a genetic disease less problematic than the limitation of the size of the family (Frumkin et al, 2011, p. 1745).
See also Goodman (1979, pp. 463–464). In inbred populations, consanguinity can also favour the elimination of “harmful” genes.
See also Zlotogora and Shalev (2014, pp. 379–380). All the children born to non-consanguineous couples (22 children) were free of genetic disorders. This is however a very small sample.
Arab Christian couples, less affected by arranged marriages, did not consult on the desirability of their union, but about the risks for their future children (Zlotogora and Shalev, 2014).
The idea was controversial: after an attempt to test this model on the Bedouin tribe with very high prevalence of genetic deafness, Rivka Carmi concluded that it did not fit this population; Joel Zlotogora was opposed to the application of the Dor Yeshorim schema on the Bedouin population since the beginning.
See also Raz and Atar (2004). The programme designed to provide genetic information to Bedouins included one Bedouin doctor trained in a medical school abroad, who acted as an assistant genetics counsellor.
According to the bioethicist Yechiel Michael Barilan, Jewish religious authorities often uncritically adopted scientific innovations. For example in the 18th century, rabbis wrote enthusiastically about variolation in spite of the important risks of this approach.
Aviad Raz's study of the implementation of genetic counselling among Bedouin communities in Israel discussed at length the reluctance of this population to screen for a “moderately severe condition”, hereditary deafness (Raz, 2005).
Professor Rivka Carmi was the first Israeli geneticist (and paediatrician) to specialize in the genetics of Bedouins of the Negev. Her work on this population started in 1975. Over the ensuing decades, she and her team developed a centre of genetic research in Beer-Sheva. She has been the President of Ben-Gurion University of the Negev since 2006.
Rabinowitz made this statement discussing well-meaning attempts to mobilize ‘enlightened’ Israeli-Palestinian to educate Jewish Israeli children about Israeli Arabs in order to reduce prejudice.
One noteworthy exception is Gaucher disease, excluded from the public health basket following the ISMG's recommendation.
This is not entirely accurate. There are three forms of Tay–Sachs disease: the most frequent infantile form, invariably fatal in early childhood; a very rare juvenile form, fatal in older children; and a relatively rare late onset form, producing neurological impairment in adults but usually not fatal. The latter form of Tay–Sachs disease is sometimes initially confused with conditions such as multiple sclerosis or Frienreich's ataxia (Neudofer and Kolodny, 2004).
The impossibility of predicting the severity of SMA in an affected child increases the carriers' reproductive dilemmas (Boardman, 2010).
The Israeli sociologist, Ronit Leichtentritt, described an especially difficult case of a woman, “Sara”, who aborted at 38 weeks and 3 days due to CF, possibly because of her doctors' failure to diagnose the foetal disease earlier in pregnancy (Leichtentritt, 2011).
On prenuptial screening for thalassemia in Cyprus, see Cowan (2008).
There are very few Arab genetic counsellors and only a handful of Arab physicians have been involved in genetic studies. The great majority of authors of publications on genetic diseases in the Arab–Israeli population are Jewish Israeli researchers.
Pan-ethnic carrier screening tests have been successfully tested in Jewish Ashkenazi populations (Gal et al, 2016; Grinzaid et al, 2015; Holtkamp et al, 2016). In 2016, multi-ethnic screening had not (yet?) been adopted in Israel. One reason may be its cost; the other may be that practitioners, satisfied with an existing technology, are reluctant to shift to a new one (technological inertia).
Cited in Paul (1987).
Whole genome testing will probably also allow a more precise and individualized evaluation of the risks linked to consanguinity.
Sigrid Vertommen has recently argued that Israel has a very long tradition of linking research on reproduction with industrial interests (Vertommen, 2017).
Karl Skorecki, an internationally known expert in genetics and the author of a pioneering study on genetics of Jewish priests (Skorecki et al, 1997).
Michal Sagi is an expert in Israeli genetics and had been a senior genetic counselor at Hadassah University Medical Center. She was the first director of the Master’s degree programme in genetic counselling at the Hebrew University of Jerusalem.
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Authors benefited from an IFRIS (Institut Francilien Recherche Innovation Société, Labex SITES – University Paris-Est) exploratory grant. Anna Zielinska addresses special thanks to Ute Deichmann, the head of the Jacques Loeb Centre for the History and Philosophy of the Life Sciences at Ben-Gurion University of the Negev, Beer-Sheva, Israel, for the postdoctoral funding (2015-2016). This paper would not be possible without the scientific input and the generous help of many people: Michael Barilan, Nadav Davidovitch, Jerry and Mali Eichler, Hedva Eyal, Yaron Ezrahi, Snait Gissis, Tsipy Ivry, Eva Jablonka, Yael Hashiloni-Dolev, Nurit Kirsh, Shai Lavi and Aviad Raz, among others. It also owes a lot to precious suggestions of four anonymous reviewers.
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Zielinska, A.C., Löwy, I. The Golden Helix: Origins, ethnicity and preconception genetic screening in Israel. BioSocieties 13, 323–348 (2018). https://doi.org/10.1057/s41292-017-0070-3
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DOI: https://doi.org/10.1057/s41292-017-0070-3