Between social hypocrisy and social responsibility: professional views of eugenics, disability and repro-genetics in Germany and Israel

Abstract

Nazi eugenics is one of the main historical events influencing current popular as well as scholarly discussions of reproductive genetics. This influence, however, is open to different interpretations and social constructions. Based on 44 open interviews with Israeli and German genetic counselors, conducted in 2000–2003, our findings suggest that while the majority of German counselors reflected on Nazi eugenics as setting moral limits for contemporary repro-genetics, many Israeli counselors detached their contemporary practice from the wrongdoings of the past. Correspondingly, German counselors were far more sensitive towards the disability critique of repro-genetics than their Israeli counterparts. We conclude with a discussion of these two opposite positions, suggesting that the comparison of German and Israeli professionals reveals a profound complexity and involvedness in coming to terms with the “eugenic” lessons of the Holocaust, on both sides. In Germany, potential benefits of repro-genetics might be rejected due to an emphasis on a more universalistic lesson of the Holocaust regarding the value of human life and dignity. In Israel, a more particularistic lesson of the Holocaust regarding national Jewish survival, combined with a lack of public debate regarding medicalization and geneticization, might have promoted the advent of unregulated commercially and consumer-driven repro-genetics.

Keywords:

• repro-genetics
• eugenics
• bioethics
• disability
• Holocaust
• Germany
• Israel
• genetic counselors

As reproductive genetics becomes increasingly varied and popular, it brings about a growing awareness of bioethical issues that are linked to eugenics. Medical geneticists and genetic counselors, who are charged with the important task of providing complex genetic information to the public effectively and sensitively, confront the challenge of tackling this loaded issue with themselves and their clients. In doing so they employ various strategies that are influenced not only by their own individual understanding but also by the ethical code of their profession and by cultural narratives used, for example, to tackle the lessons of “Nazi eugenics” and the place of disabled people in society. The ambiguity and complexity of the term “eugenics” makes this important task even more difficult. In this study we focus on attitudes of medical geneticists and genetic counselors in Germany and Israel and how they construct a sense of social accountability vis-à-vis the attribution of eugenic aspects to their work by bioethicists, lay people, and by some of these health professionals themselves. We begin by outlining the comparative context of genetic testing in Germany and Israel. An overview of the various meanings attached to “eugenics,” and the ideological shifts this concept has undergone, are then provided as a background for the ensuing empirical analysis. We conclude by discussing the implications of this comparison for moral boundary maintenance by health professionals, especially in the context of eugenics, disability, and the lessons of the Holocaust, and comment on whether any normative conclusions can (and should) be drawn from such comparisons.

The comparative cultural and historical context of genetic testing in Germany and Israel

Previous studies have highlighted the national contrasts between Germany and Israel regarding the regulation and ethics of genetic testing (Wertz and Fletcher 1989, Gottweis and Prainsack 2006, Hashiloni-Dolev 2007). Many German feminist and disability rights groups actively oppose genetic technology (Krones and Richter 2004), while disability activists in Israel support the use of prenatal diagnosis (PND) to prevent life with disabilities (Raz 2004). In Germany the production of human embryonic stem cells is legally forbidden and pre-implantation genetic diagnosis (PGD) is contested, while in Israel both practices are strongly supported (Krones et al 2005, Gottweis and Prainsack 2006, Hashiloni-Dolev and Shkedi 2007). Population carrier screening is state-administered and funded in Israel (Zlotogora et al. 2009), but in Germany – where in some genetic diseases, such as CF, similar and even higher carrier frequencies exist – population screening is rejected and carrier testing is offered strictly on an individual basis and is not a standard of care in pregnancy (Harris and Reid 1997, Nippert 1998).

Surveys conducted by Hashiloni-Dolev (2007) following Wertz and Fletcher (1989) found that about 13%–14% of Israeli genetic counselors, as opposed to 0–1% of German genetic counselors, agreed to the statement “an important goal of genetic counseling is to reduce the number of deleterious genes in the population.” A majority of German counselors, as opposed to a minority of Israeli counselors, agreed that “the existence of people with severe disabilities makes society more rich and varied.” In addition, agreement with the idea that nowadays it is socially irresponsible to knowingly give birth to an infant with a serious genetic disorder was six times higher among Israeli counselors. These data, previously interpreted as representing a “pro-eugenic” outlook among Israeli geneticists, have been explained by a host of various institutional and cultural factors, including: state intervention vs. personal autonomy, Christianity vs. Judaism, perspectives on the body and illness, utopian and dystopian images of medical technology, and differing interpretations of the Holocaust (Hashiloni-Dolev 2007). The association of reproductive genetics with eugenics has been especially loaded with historical connotations related to the Holocaust, both in the context of ideological state intervention and the political instrumentalization of medicine (Caplan 1992, Winau and Wiesemann 1996, Singer 2000, Weindling 2005). In both contemporary German and Israeli societies the Holocaust still exerts a strong influence on political consciousness. However, what is remembered may not be the same as what lessons are drawn from the horrors of the past. Various studies (Firer 1989, Segev 1991, Raz 1994, Levy and Sznaider 2006) demonstrate that many Israelis emphasize a more particularistic lesson of the Holocaust, namely the fear of Jewish victimization and annihilation. Hence, the lesson is centered on the need to be strong and independent. In contrast, many in Germany prefer to stress the more universalistic lesson of the Holocaust as posing a commitment to human life and dignity so horribly shattered by Nazi politics and Nazi medicine (Winau and Wiesemann 1996, Wuerth 1997, Weindling 2005). These memories are also related to the history of human genetics and to present-day bioethical dilemmas in both nations. Eugenic aspects were interwoven into Zionist ideology and practice ever since its formation, yet these features were criticized by Israeli scholars only in recent years (Stoler-Liss 2003, Falk 2006, Sand 2008, Hirsch 2009); furthermore, this criticism remained in the academic world and did not result in any public debate. Likewise, human genetics has prospered in Israel ever since the 1950 s, and remained without any moral stigma. In contrast, human genetics was lagging behind in Germany after the war (Deichmann 2002), and moral suspicion is still haunting contemporary reproductive genetics in Germany (Schöne-Seifert and Rippe 1991, Erikson 2003, Krones and Richter 2004). Our study explores how the legacy of “Nazi eugenics” is being interpreted and judged by a specific professional group, namely medical geneticists and genetic counselors, in both countries today.

“Eugenics”: ambivalent meanings and ideological twists

The following overview of a complex and loaded issue is not meant to establish an objective scientific definition of “eugenics” but rather to bracket and question such definitions through the widely held public association of repro-genetics and “eugenics.” It is important to realize at the outset that “eugenics” is a divisive and loaded concept that can take many forms. A wide variety of different means can be, and have been, deployed in order to achieve eugenic ends (Paul 1994, Mahowald 2003). “Eugenics” would be regarded today by many scientists as the idea of improving the gene pool of a population. This could be done through selective breeding or genetic enhancement (so-called “positive” eugenics) and/or by preventing the birth of undesirable offspring or preventing them from reproducing (so-called “negative” eugenics). However, many geneticists make considerable efforts to distinguish the new reproductive genetics from eugenics, especially in conjunction with antenatal testing and abortion of genetically defective fetuses and of genetic determinism and behavioral genetics (Kerr et al. 1998).

A remarkable pendulum shift between utopian and dystopian images of “eugenics” can be traced since the late nineteenth century (Raz 2009). Eugenic ideas originally advocated by scientific and religious leaders at the turn of the twentieth century were utopian and driven by rhetoric of social reform. This type of “old eugenics” was not connected to genetic testing but rather employed methods such as sterilization, immigration restriction, family planning promotion schemes, and anti-miscegenation laws (Paul 1995, Stone 2002, Stern 2005). In the US, such methods were mostly directed towards immigration and focused on racial issues, whereas in the UK, class-oriented eugenicists were driven by the fear that if the “lower classes” outbred their social superiors this would lead to evolutionary regress (Mazumdar 1992). Following World War II eugenics has been associated with Nazi atrocities. Nazi policies such as infanticide, assisted suicide, marriage prohibitions, forced abortions and ultimately genocide were actually dysgenic (preventing certain people from reproducing) and not eugenic, but they became associated with eugenics, turning the term into a “red cape” for many people and for many years (Caplan et al. 1999). As a result, the profession of genetic counseling had to regain social legitimacy by building itself, in the 1960s, on an ethos of “non-directiveness,” which later came increasingly under attack (Caplan 1993, Michie et al. 1997). The ideal of an ethic of neutrality provided room for genetic counseling to grow despite two central hindrances – the long shadow of Nazi eugenics as well as heated controversy over the rights of women to elect abortions.

The advent of repro-genetics in the 1980s and 1990s led to a renewed interest in eugenics, encompassing and sometimes blending both criticism and support. The growing use of PND, PGD, even pre-marital carrier testing in some communities, all labeled under the category of “new eugenics,” has been recently praised as liberal eugenics (Agar 2004). The focus of liberal eugenics is the individual, not the population, nation, race, or class, and it gives primacy to the individual's own values and conception of what constitutes a good life. The role of the state in a program of liberal eugenics is merely to facilitate rather than to impose eugenic choices. While “old eugenics” is seen as authoritarian (and hence dystopian, following the lessons of history), the “new eugenics” is regarded from this viewpoint as voluntary, liberal and even liberating, and hence constructive and utopian (Agar 2004). The liberating effect of the new eugenics is optimistically described as a shift from “chance to choice” (Buchanan et al. 2000). On the other hand, because the “new eugenics” is seemingly predicated on individual choice rather than governmental coercion, it is regarded by its critics as “backdoor eugenics” (Duster 2003) or “voluntary eugenics” (Wertz 1998), which is actually a mask for repressing the disabled (Parens and Asch 2000, Kerr and Shakespeare 2002). Such criticism is also shared by two additional streams: the Foucauldian literature in this area (Novas and Rose 2000, Lemke 2005, 2007) as well as by some feminist thinkers (Ettorre 2000, 2002, Ettorre et al. 2006). Yet another perspective denounces any linkage between genetic testing and eugenics. In this view, medical genetics is different from eugenics because it is premised on reducing human suffering and increasing the reproductive choices of individuals genetically at-risk (Cowan 2008, Raz 2009).

The study

To shed light on how health professionals reflect on and work through the various contesting public and professional images of eugenics, and how this boundary maintenance is embedded within national and cultural narratives, we conducted a secondary analysis of interviews with German and Israeli medical geneticists and genetic counselors. Our analysis draws on 12 open interviews conducted by AR during 2001–2003 with Israeli medical geneticists and genetic counselors (GC) and 32 open interviews conducted by YHD during 2000–2001 with 18 Israeli and 14 German GCs.1 Most of the interviewees were medical geneticists who specialized in diverse medical fields such as pediatrics, gynecology, and internal medicine. Eleven of the interviewees (all of them Israeli women) were non-MD genetic counselors. Israeli counselors were first approached in a meeting of their organization (clinical rounds), while others were reached through membership lists of their professional organizations, or following a referral from a colleague (snowball sample). In Israel, interviews took place in eight out of the 11 active hospital genetic institutes. In Germany, because of the large size of the country and because of budgetary limitations, interviews were mostly conducted in the province of North Rhein-Westphalia. Using the list of the German professional board of geneticists (Berufsverband Medizinische Genetik, BV), all counselors who were working within two hours' driving distance from the city of Cologne were contacted. Many of the interviewees in Israel and Germany were involved in some capacity as advisors to hospital and governmental committees and some were quite known and prominent figures in their field and made frequent contributions to discussions about genetics in the media. To maintain the anonymity of interviewees we therefore number each quote and provide only the nationality (i.e. German or Israeli). All interviews were tape recorded, as well as summarized by hand. Interviews in Israel were conducted in Hebrew, while interviews in Germany were conducted in English.

In the interview respondents were asked about the ethical aspects of genetic testing (including for example the disability critique); the public and medical goals of genetic counseling; the impact of repro-genetics on society and the impact of social perspectives on repro-genetics; as well as about how they personally deal with the attribution of eugenic aspects to their work by different critics. Interviews were open and unstructured. The authors compared and discussed the interview transcripts, inductively analyzing them to find recurrent themes that were related to issues of eugenics, looking for shared categories that reflected national as well as professional perspectives among the respondents (Denzin and Lincoln 1994). Both authors made explicit use of the word “eugenics” in their interviews, and respondents were asked to reflect on how they come to terms with “eugenics and the past.” In order to challenge the more formal presentation of “national shame” typically employed by some German interviewees, the first author told them about studies describing the relative permissiveness of their Israeli counterparts, as well as about population screening tests which are being performed in Israel, asking them to reflect comparatively and normatively on these themes. Our analysis included all attitudes – those which could be regarded as more informal and subversive as well as those which were framed as more formal and contrived – following our conviction that all of these should be regarded as equally authentic constituents of the “emic” discourse of our respondents.

The national framing of repro-genetics vis-à-vis Nazi eugenics

While World War II and Nazi atrocities were no doubt a formative event for both Germans and Israelis, our respondents expressed quite a different framing of it in conjunction with their work in repro-genetics. To begin with, most German respondents agreed that Nazi eugenics should serve as a constant reference for the current practice and regulation of repro-genetics. For example, in response to a question about the impact of the past, one German interviewee argued:

I was born after the war. But it has a strong influence on me. It is something you can't escape. And why should you? The fact that the handicapped have been killed, and not so long ago … Sometimes patients still tell me about the history of their families under the Nazi regime. It's true that eugenics was practiced in many places, but we did it in a “German professional way” and went all the way. Of course this is a warning relevant also today. (#1)

The constant comparison with the past, namely Nazi eugenics, underpinned many German respondents' accounts of the principle of autonomy as justifying the contemporary use of repro-genetics. For example:

The past influences my work. That's why I concentrate on the individual, the mother and the family, and never think about what's good for the state. Concentrating on individuals protects me from different fears. (#2)

Because of our history Germans are more careful, It's a national scar that shapes us. That's why we are more non-directive in our work. We say that the mother or the parents have to decide, and behind that stands history. … Germans are not completely free, but this may be an advantage among western nations, especially in genetics. (#3)

Even those German respondents who emphasized that their personal work is not strongly affected by the past admitted that it is “a problem here in Germany” and that they feel “more responsible” because of the past, even if not guilty. A few German respondents were, however, critical of the “repetitive mentioning of the past” as a trend that blocks fresh moral thought. For example, a medical geneticist working in the private sector in Germany said:

Because of our history, I am afraid that we think of the moral dilemmas that have to do with reproductive genetics in an old fashioned manner, like people in the west thought of the mini-skirt in the 70s … Are we better than the Israelis or the Americans? I don't think so, but it is very important for us to seem better because of our collective guilt feelings. This leads to a group dynamics that blocks moral thought and to moral hypocrisy. I personally feel that it is very difficult for me to state a non-official opinion that does not have to do with high moral principles but with the difficult reality of human life. (#5)

A few German respondents even criticized what they saw as a “national obsession” leading to what they viewed as hypocrisy:

The non-honest discussion of repro-genetics in Germany is mainly caused by the history of eugenics. We want PND and legal abortions, but please – don't let us talk about it. Personally history is influencing me as well, because it has shown us how in an amazingly short time civilized society can lose control. That's why today we don't talk about what we do honestly. We perform PND, but do not discuss it openly in the public. (#6)

The majority of Israeli respondents, in contrast, disagreed that Nazi eugenics should serve as a constant warning for their own current work in repro-genetics. Indeed, most of them claimed that contemporary repro-genetics does not require special moral contemplation with regard to the wrongdoings of the past. Such distancing from Nazi eugenics has characterized the formation of medical genetics in Israel. For example, in their account of the history of medical genetics in Israel Chemke and Steinberg (1989), two prominent Israeli human geneticists, mention that the State of Israel was built “upon the most tragic event in human history, the Holocaust, during which 6 million Jews were killed …” however this past was used to propel a belief in the necessity of science and to serve as a reminder of the continuous threat on Jewish survival: “There is an obviously strong memory of the terrible events only half a century ago, creating a strong desire for survival” (p. 280). Most of our respondents claimed that while (Nazi) eugenics was clearly something to remember and take into account, contemporary repro-genetics is different and is not informed by the same moral criticism:

Eugenics should be taken into consideration … But contemporary repro-genetics is different. We are not serving any state ideology but rather provide information to the public. (#7)

The majority of Israeli respondents distanced themselves from eugenics by employing various strategies. Some Israeli respondents became angry when reflecting on the perceived linkage between repro-genetics and eugenics, calling it “cheap demagogy” and “demonization of the profession of medical genetics.” Others denounced the linkage by claiming that “genetics actually proves how much we are alike.” Still others regarded it cynically. For example, the head of a large genetic institute claimed: “Those accusations make me laugh. When my grown-up children try to tease me, they say I am practicing eugenics. Of course, I do not take this seriously.” (#8) A few Israeli respondents expressed a semi-critical view of such distancing but also eventually embraced it. For example:

We [Jews] were slaughtered for being different, and now we have zero tolerance for others. Our tolerance for those who are [genetically] different is very low. We are not satisfied with anything less than perfect. This is why Israel is world leader in prenatal testing. I am not really criticizing this. (#9)

Views concerning disability in society and the disability critique of PND

Medical geneticists and genetic counselors in Germany and Israel had different feelings and opinions concerning criticism pointed at their practice by the disabled. The vast majority of German GCs were highly aware of this sort of criticism, and even when they criticized it, they did so very cautiously. The factor of perceived hypocrisy was also mentioned by many respondents in this context:

I don't think society should pressure people to have disabled children, I believe it to be a personal choice. But here in Germany, the disability organizations see it differently. I believe the parents of the disabled are not so different in Germany than elsewhere, privately they don't want another sick child, but they don't dare argue in public. The ones who argue are the talented and the smart among the handicapped, those with political power. The thing is that only they are heard, not the really miserable ones. (#10)

The majority of Israeli GCs, in contrast, were less aware of the disability critique pointed at repro-genetics. Once again, distancing was apparent in many Israeli GCs' dismissal of the suggestion that repro-genetics is sometimes seen as a contemporary form of racism against the disabled. Others were extremely opposed to the disability critique:

I think that saying we are practicing a form of racism is cheap demagogy. The deaf, for example, wish they were not deaf, but they say: I was screwed, so I can now screw others. It is like AIDS patients who infect others, saying otherwise it is racism against them. It is a very hypocritical way of looking at things. Maybe some “professional dwarfs” and deaf people want political power, and that's why they want more handicapped people to be born. But I don't have to agree with it. (#11)

Whereas all German GCs paid respect to disability as embodying the idea of human genetic diversity – either for the sake of a humanistic ethos or for the sake of biological diversity – many Israeli GCs mocked those ideas as “absurd,” “impractical,” “high-minded” and even “bullshit”:

Do people with severe disabilities make society more rich and varied? Maybe on a philosophical level. But in reality, I want to see you spend one day with a child with CP or mental retardation, and then you will see what it really means. Then I will ask you again what you think of the high-minded who say it's good. There are enough things that make our lives diversified without suffering. One should not have disabled children in order to enrich the world or to make his neighbor more sensitive. (#12)

In an ideal world, where life has a higher value and where there is tolerance towards the disabled, I might have said yes, the disabled enrich society. Not in the sense of diversity, but in exposing society towards those less lucky and by this, increasing tolerance. Theoretically, society could be enriched by interaction with the abnormal, but practically, the disabled suffer from society's attitude towards them. That's why I don't think children should suffer in order to correct society's ways. Besides, I think its better that society becomes less diversified, and everybody will be normal, if it means less suffering. (#9)

Notably, a few German respondents echoed similar criticism in claiming that the ideology of diversity disregards the suffering of the child and the parents. As the following German medical geneticist argued:

I do believe society is richer with the disabled. But who has to pay the check for the education society needs? At the end of the day it is the disabled themselves, and their families, who have to deal with all the problems, and I don't see it as their duty to live in order to educate us. I don't think my patients should suffer for me to have an educational humanistic experience. (#10)

These few German respondents also considered the influence of the past as hypocritically blocking an open and honest moral debate regarding the practice of repro-genetics:

We Germans always want to be better than others, especially the older generation, which suffers from guilt feelings. Therefore, we say the disabled are necessary for society. I partly agree with it, because none of us stays young and healthy forever and we had better learn how to deal with it. However, when a couple has a sick child who can't sit, walk or talk, it is just awful. Yet, society does not want to hear about it, only about how important it is to have sick people among us. And then the Nazi theme pops up again, with all the troubles the disabled faced then. Yet, what I think is that by looking at the past, we just close our eyes to our contemporary reality. And so, everybody has to support the official opinion, and hide what he really thinks, or he may be strongly criticized. (#5)

Although some of the German respondents felt the burden of their nation's past to be too heavy, none of them went as far as agreeing with the idea that it is better for society to be free of handicapped people. Furthermore, the large majority of German respondents resented any cost–benefit calculations concerning prenatal genetics. These positions were not shared by the majority of Israeli respondents, who despite their espoused liberal ideology of parents' autonomy regarded the decision to knowingly bring into the world children with genetic defects as socially irresponsible. The following remarks of an Israeli genetic counselor throw into relief the conflict between social and personal responsibility:

A family that chooses to give birth to a baby with Down's syndrome places the burden upon society. My own opinions concerning such a decision are contradictory. On the one hand I find the parents' decision to be just. But, later on I think they cannot turn to society and demand its support, as if it is society's problem, as if the life belongs to the individual but the bill has to be paid by the community. Yet, I am aware that a humane society should care for the needy. That's the contradiction. I also understand religious people who don't abort, but our belief system is totally different. I am for knowledge and not for beliefs, and those are two parallel lines of thought that will never meet. That's why I am not sure why people with my own faith should support people with a religious faith. It's like with the orthodox Jews or with the Bedouin. They choose to have an endless number of children, but then they complain about their poverty. I think people should decide any way they like, but then they must also take the responsibility for their decisions. (#12)

In conclusion

This study contributes several novel insights to the sociological challenge of unpacking medical geneticists' and genetic counselors' use (or rejection) of the term “eugenics.” As previous studies have shown, eugenics is like a matador's “red cape” that draws biased and emotional responses from people, including medical geneticists. Paul has argued that “eugenics is a word with nasty connotations but an indeterminate meaning; indeed it often reveals more about its user's attitudes than the policies, practices, intentions or consequences labeled” (Paul 1995, pp. 665–666). This study reveals some key features of the attitudes of geneticists in Germany and Israel regarding “eugenics” and repro-genetics. In a similar manner to the accounts of geneticists in the UK (Kerr et al. 1998), our respondents often claimed, when making pro-genetics arguments on the issue of antenatal testing, that parents benefit from being able to choose to abort potentially disabled fetuses. This principle of parental autonomy no doubt constitutes a major professional premise for drawing the line between the “old eugenics” and the “new genetics.” This general professional premise was nevertheless also embedded in distinct national and cultural narratives.

The respondents' views highlighted significant differences in interpreting the lessons of Nazi eugenics. Nazi history led a majority of the German respondents to the conclusion that reproductive decisions should be completely individual. In addition, Nazi history was interpreted by many as reinforcing a moral understanding of the “good society” as genetically varied, thus perhaps putting society's interests before individual ones.2 This approach is linked to a general German interpretation of the lessons of the Holocaust as morally universal, and as highly relevant to current bioethical dilemmas. Fear of the revival of eugenic policies is often mentioned by German critics of contemporary reproductive genetics (Erikson 2003, Krones and Richter 2004), and German geneticists have been called “the new eugenicists” by different political, feminist and disability rights groups (Schroeder-Kurth 1999). While there is no singular, “national” German or Israeli view of the Holocaust, Israelis appear to focus more on the aspects of Jewish victimization and heroism (Firer 1989, Segev 1991, Raz 1994). The Israeli public often downplays the non anti-Semitic aspects of Nazism (Barilan 2003). In addition, many Israeli Holocaust survivors emphasize the singularity of the Holocaust as an event beyond comprehension and comparison, thus cautioning against drawing bioethical lessons from the Holocaust (Leichtentritt et al. 1999). Similarly, Israeli geneticists in the 1950s and 1960s saw the Holocaust as morally irrelevant to their work (Kirsch 2003). Indeed, for most of our Israeli respondents, Nazi history was scientifically and morally interpreted through a relatively particularistic worldview, stressing the importance of national strength and survival, while downplaying the more universalistic lessons regarding the potential dangers of science, medicine and genetics.3

In terms of the social responsibility towards disability, Israeli and German respondents emphasized opposite types of conflict between the individual and society. Israeli respondents highlighted, in a characteristically straightforward manner, the conflict resulting from certain parents' insistence on carrying “problematic” pregnancies to term, at the expense of burdening society. German respondents, in contrast, emphasized a different conflict – that between the individual wish to avoid having abnormal children and society's need for genetic diversity and tolerance. This national difference in the professional view of disability's place in society no doubt also finds its expression in the positions of patients' organizations. In this context, which invites further comparative research, German disability groups appear to actively lead a dominant anti-eugenic and anti-genetics protest. In contrast, Israeli disability groups appear to take a passive, largely pro-eugenic and pro-genetics position, consistent with the dominant agenda of geneticists (Raz 2004, 2005).

This study concerns itself with moral judgment on two major levels. The first level is that of the respondents, in Germany and Israel, who reflected on their own and their society's normative dispositions regarding eugenics. It should be stressed that the reference to “social hypocrisy” as characterizing formal policies and declarations was made by several of our German respondents, and not by the authors. While this level has received a much more substantive and detailed analysis here, such analysis nevertheless also entails a second level of our (second-order) readings and interpretations of the respondents' attitudes. As we set out to analyze and compare these first-order normative interpretations, we found ourselves facing the classical Weberian dilemma of science and values (Bruun 2007). While many medical anthropologists and sociologists today conduct post-positivist, interpretive research, many still insist that their work does not contain any explicit normative analysis (Turner 2009). On the other hand, second-order interpretive reflection, otherwise also known as “positioning,” scorns the “hypocritical myth of value-free science” and requires that researchers explicitly self-examine and discuss any undercurrents of moral judgment and evaluative positions they might have about the subjects' views (Pels and Salemink 2000, Jacobs-Huey 2002). The study of eugenics, being such a loaded and sensitive concept, throws into relief the difficult challenge of balancing the researcher's perspective (etic) with that of the members of a culture or a group (emic). Our own moral stance towards eugenics, just like our respondents', is no doubt also embedded in cultural and national history. However, the very point we were trying to make (and to analyze) here concerns the ambiguity of eugenics, its varied uses and abuses. As sociologists who study expert and lay understandings of science, we are more interested in the social and ideological construction of eugenics and its normative repercussions than in its “objective” scientific definition or moral lessons.

In our moral view, medical geneticists and genetic counselors, in Israel and Germany, seek to reduce the suffering of both parents and children by helping the parents to have additional healthy children. All of these people act in the hope of reducing suffering, of making life less painful for people who carry, or who pass on, these disease mutations. This important endeavor is completely different from eugenic attempts to sterilize and segregate those “genetically unfit” thus prohibiting their reproduction. In contrast, today's reprogenetics concerns itself not with the so-called “genetically unfit” but with individuals genetically at risk. Nevertheless, the comparison of German and Israeli counselors reveals a certain profound complexity and involvedness in coming to terms with the “eugenic” lessons of the Holocaust. Because of the loaded polysemy of “eugenics” it is very difficult to confront it directly, namely logically and reasonably. This is perhaps why both Israelis and Germans avoided such direct confrontation – for example by elaborating the argument that medical genetics is not eugenics (Cowan 2008) – and instead employed strategies of distancing or rejection. Our findings demonstrate that while practicing repro-genetics, many of the German counselors appeared to be mentally fixated to the binding legacy of the “old eugenics.” Being suspicious of everything in repro-genetics as “new eugenics” leads many German professionals (as well as the German state itself) to declarative positions that seem to verge on what the respondents perceived as hypocrisy, and to problematic regulations which ban and reject potentially beneficial genetic tests such as population screening or PGD.

Israeli counselors largely rejected the relevance of Nazi eugenics to contemporary repro-genetics and overlooked the wide-ranging ethical debate in Germany and elsewhere. Many Israeli counselors espoused, on the one hand, a liberal ethos of individual choice and market forces, while on the other hand claiming that it is socially irresponsible to knowingly give birth to an infant with a serious genetic disorder. Such a stance might lead to inadvertent consequences such as the prenatal screening for Gaucher's disease (a Jewish Ashkenazi enzymatic deficiency which is very prevalent (1:15) yet nevertheless often mild and treatable) which is offered – despite formal opposition – in various Israeli genetic institutes as part of the panel of genetic tests (Zimran et al. 1997). As Kannai and Chertok suggest (2006, p. 348), “prenatal genetic testing for Gaucher may be a business tactic to attract clients,” and as such exposes the perils of leaving genetic testing in the hands of the so-called “free market.” The dangers of the free market approach do not end here. Commercialization is evidently also closely linked with health disparities. Without relevant and effective public education, the free market approach is also closely linked with an increased medicalization of pregnancy and resulting patient anxiety. Communities as well as individuals should hold the power to accept or reject the offers of clinical genetics, but for that they need to learn about it.

Notes

The population of practicing GCs at the time consisted of about 50 counselors in Israel and about 200 in Germany.

In a similar vein, writing about the embryological research debate in England and Germany, Richardt (2003) writes that “In contrast to Great Britain, where the effects of the legislation were judged on the basis of the effects on an individual person, the common good or the interests of society as a whole were used as the basis for the rejection of embryological research in Germany” (p. 110).

Compare, in this context, the relatively similar conclusions also reached by Hazan (2002) and Feldman (2008) who studied Israeli youth delegations to sites of Nazi concentration camps.