Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma
Introduction
Community-based programs for genetic screening, testing, matching and counseling are a growing, global bio-social phenomenon. This paper focuses on Dor Yeshorim, the global project established by Rabbi Ekstein originally in the context of a terminal autosomal recessive disease (Tay-Sachs) and using a culture-specific premarital carrier matching scheme. This program has become for many a paradigm for the successful assimilation of new genetic technologies by a traditional community. As such, this program provides an intriguing case study for examining the manifold implications of bioethical dilemmas such as stigmatization, eugenics, medicalization, privacy and autonomy.
An ethnographic study of Dor Yeshorim has the potential to expose the unintended consequences of the interplay between ‘genetic responsibility’ and communal narratives (Davis, 2004). This study describes for the first time the implementation of Dor Yeshorim by ultra-orthodox Jewish community members, focusing on the emerging patterns of this utilization as an arena of negotiation. Although there are many discussions of Dor Yeshorim (e.g., Friedman Ross, 2006, Prainsack and Siegal, 2006, Wailoo and Pemberton, 2006), these discussions arguably have a common blind spot. They are informed by the public declarations of the program's founders and community leaders, while local patterns of interpretation and utilization remain outside the scope of the discussion.
We begin with an overview of the research concerning broader social and ethical aspects of community-based programs for carrier testing and matching. The cultural context, history and practice of Dor Yeshorim in the Haredi (ultra-orthodox Jewish) community are then discussed. To explore the local patterns of utilization and interpretation, the main part of the paper describes the contents of Dor Yeshorim's instruction in the community and analyzes interviews conducted with ultra-orthodox Jewish women and matchmakers.
Section snippets
Social and ethical aspects of community-based carrier testing and matching
The manifold practices of genetic testing and screening are fraught with social and ethical dilemmas including discrimination, stigmatization, medicalization, resource allocation, accessibility, privacy, and autonomy (Chadwick, 1998, Ettorre, 2002, Kolker and Burke, 1998). We focus here on a particular form of genetic testing, namely premarital carrier testing (and matching). Previous studies of carrier testing have largely focused on the individual level concerning uptake, compliance, stress,
Dor Yeshorim and the Haredi community: cultural context, history and practice
In the ultra-orthodox (Hardedi) community in Israel, which comprises about 800,000 people (out of 5.4 million Jews living in Israel, a country of 7.2 million), average fertility rates reach 7–7.5 births per woman (Remennick, 2006), compared to a fertility rate of 2.8 children per woman in the general Israeli population (Landau, 2003). The ultra-orthodox community, although usually seen from the outside as a homogenous enclave, is actually comprised of many sub-groups, struggling at times over
Methodology
To shed light on the assimilation of Dor Yeshorim by members of the ultra-orthodox Jewish community and its emerging patterns of utilization and interpretation, interviews were conducted with ultra-orthodox women and matchmakers. Data collection and analysis conducted in this study reflect the exploratory nature of the research. As a result, a naturalistic, qualitative mode of inquiry was preferred. Interviews (which lasted 1–2 h) were semi-structured, containing questions regarding matchmaking
Carrier matching as collective socialization
For all the respondents, utilization of Dor Yeshorim was a taken-for-granted matter crossing group affiliation, age and socio-economic status, as the following quotes illustrate:
“The success of Dor Yeshorim – for us this is very simple, because in our community there aren't many choices. God forbid, if there is a baby like that, you cannot abort, so you must do what you can to prevent it. I did the test when I was 17. Everyone in my class did it, it's a routine” (27, married + children,
Misunderstandings and ignorance regarding the genetic basis of carrier matching
A growing debate over the (mis)representation of genetic knowledge in the media and among the public has emphasized the need to counter genetic determinism and prevent the use of genetics to reinforce discriminatory messages (Condit, 2007, Nelkin and Lindee, 1995). Indeed, what do ‘gene for’ or ‘carrier’ mean to lay people? The question of what does a ‘gene for’ mean is influenced by community norms and cultural preconceptions. For example, some of the respondents said that a ‘carrier’ is
Carrier matching and the matchmaking process
In strictly Orthodox Jewish circles, dating is limited to the search for a marriage partner. Both sides (usually the parents, close relatives or friends of the persons involved) make inquiries about the prospective partner, e.g. on his/her character, intelligence, level of learning, financial status, family and health status, appearance and level of religious observance. Matchmaking guidebooks for the Haredi community warn that the matchmaking process can be in favor of the “wealthy and
The misunderstood rationale of Dor Yeshorim and the power of presumed carrier stigma in the Haredi community
The vast majority of the respondents (22 of 24) expressed the view that a genetic disease in the family was a stigma which greatly reduced the prospects for matching. As one of the respondents (19, married, Lithuanian) said:
“This is well-known. You do Dor Yeshorim so that the genetics will be good. So that you don't have children who suffer. I have in my class a friend with three brothers who are sick with CF and she tells everyone: Do the test!”
Q: “Is your friend married?”
A: “No and it is
The twofold view of disability: testing and supporting
Yet another theme that emanated from the interviews concerned perceptions of disability in the community. All of the respondents spoke, on the one hand, about the increased acceptance of and support for people with disabilities in the ultra-orthodox community, and on the importance of premarital genetic testing on the other hand. Most of them acknowledged this gap between testing (before marriage) and supporting (a child born with a disability) by stressing the suffering imposed by the
Discussion
The purpose of this study was to explore the views of members of the ultra-orthodox community regarding premarital carrier matching. Although the sample in this study reflected relevant parameters of the population, namely Hassidic as well as Lithuanian women stratified by age and marital status, given its small size it is not possible to make any firm conclusions whether the views of this group are representative of the entire community. Furthermore, our study focused on ultra-orthodox women
Dor Yeshorim and Israeli society
At first glance, Dor Yeshorim appears to be conducted in a cultural bubble. The Haredi community studied here, although living in Israel, separates itself culturally from secular Israeli society. Indeed, the principle of premarital testing, as opposed to prenatal diagnosis, reflects the difference between orthodox and secular communities. Because abortion following prenatal diagnosis is usually forbidden, the ultra-orthodox Jewish community developed its own screening program, namely Dor
Implications for the social analysis of the ethics of community genetics
Many geneticists, in Israel and the US, cooperate with Dor Yeshorim since they view it as a necessary adaptation of modern genetic technology to ultra-orthodox Jewish culture. However, the findings shed new light on the ethical price of this compromise. Dor Yeshorim advocates a communitarian, culturally bound concept of “genetic responsibility.” Another view of genetic responsibility, related to the “standard view” of North-American and European genetic counseling, would emphasize transparency
Acknowledgements
The authors would like to thank all the respondents who participated in this study. We are grateful to Silke Schicktanz, Barbara Prainsack, Yael Hashiloni-Dolev, Joel Zlotogora, David Leiser, Ayala Frumkin and Sari Lieberman, who provided important suggestions. Thanks also to the journal's editor and anonymous reviewers for their helpful comments.
References (55)
- et al.
The Dor Yeshorim story: community-based carrier screening for Tay-Sachs disease
Advances in Genetics
(2001) ‘Important to test, important to support’: attitudes toward disability rights and prenatal diagnosis among leaders of support groups for genetic disorders in Israel
Social Science & Medicine
(2004)- et al.
Cystic fibrosis heterozygote screening in the orthodox community of Ashkenazi Jews: the Dor Yeshorim approach and heterozygote frequency
European Journal of Human Genetics
(1996) Bioethics and the problem of pluralism
Social Philosophy & Policy Foundation
(2002)- et al.
Prevention of thalassemia in Cyprus
Lancet
(1981) - et al.
How thalassemia was controlled in Cyprus
World Health Forum
(1986) Analysis and integration of definitions of community genetics
Community Genetics
(2000)- et al.
Screening for carriers of Tay-Sachs disease in the ultraorthodox Ashkenazi Jewish community in Israel
American Journal of Medical Genetics
(1993) Choosing who will be disabled: genetic intervention and the morality of inclusion
Social Philosophy and Policy
(1996)- et al.
From chance to choice
(2000)