05/26/2017
Dr. Jessica Mozersky received her PhD in Anthropology from University College London’s Interd
isciplinary Institute of Human Genetics and Health, and she is assistant professor of medicine at the Washingston University School of Medicine in St. Louis. Her research explores the ethical and social implications of new biomedical and genomic technologies including cancer genetic testing, prenatal genetic screening, whole genome sequencing, and PET neuroimaging. Dr. Mozersky is the author of Risky Genes: Genetics, Breast Cancer, and Jewish Identity (Routledge 2013), which reflects upon and offers new insight into the ongoing debates regarding the implications of genetic research for vulnerable populations. Risky Genes focuses on Ashkenazic Jewish women with BRCA mutations (errors in the genetic code linked to high risk of breast and ovarian cancer), and explores what it means to be told that you have an increased risk of genetic breast cancer because of your Ashkenazi Jewish heritage.
How have developments in genetics and genomics affected Jewish identity?
This is such an interesting question, because one of the things I demonstrate in the book is the two way flow between genetics and Jewish identity making them intertwined in a mutually constitutive way. What I mean by this is that knowledge arising from genetic research does have an impact on Jewish identity but at the same time Jews have been actively involved and participatory in genetic research which has in turn generated the large amount of genetic knowledge about Jews, which exceeds most other populations. So on the one hand, genetic knowledge can influence Jewish identity, although as I describe below this may be more in terms of reiterating pre-existing identity and narratives rather than transforming identity based on new genetic knowledge. While on the other hand, it is essential to remember that genetic knowledge about Ashkenazi Jews is not a mere reflection of their particular genetic value or uniqueness as a population, but also their active participation as research subjects, physicians, and scientists generating and shaping this knowledge.
For instance, aspects of Jewish theology regarding medicine, the body, and the role of people intervening with nature to improve health, actually encourage participation in research and the use of new technologies. Judaism is more flexible than other major religions about abortion and the use of reproductive technologies (as the work of Susan Martha Kahn has shown). While for many secular Jews, Jewish theology does not play a part in their everyday lives or medical decision making, such broadly endorsed cultural values can still imbue people’s thought processes and inform their views regarding the value of genetics, and help explain high rates of participation in genetic research and testing.
During the course of your research, what were some of the interactions you saw between Jewish identity and genetics?
I embarked upon this research with a presumption that individuals might feel discomfort knowing that their risk of genetic breast cancer was associated with being Ashkenazi Jewish or undergoing genetic testing for “Ashkenazi mutations.” I discovered that this interpretation was much less common for those that I interviewed than the ways in which genetics, genetic testing, and even being at risk of genetic breast cancer, could reiterate pre-existing narratives about shared history, culture, blood based belonging, and concern for future generations. I rarely met a person who was not familiar with genetic testing for Tay Sachs before marriage or having children. When I asked individuals why they thought Ashkenazi Jews had a higher risk of genetic disease, most responded with an explanation about a shared history in Eastern Europe living in small villages where endogamy (the tradition of Jews marrying other Jews) was common, and which contributed to genetic disease. This narrative conveys both the importance of endogamy within Judaism and external oppressive forces such as laws that barred Jews from marrying non-Jews. In this way, Jewish history and genealogy are deeply entwined with genetics.
In a similar vein, and to my surprise initially, was the suggestion by some individuals to “marry out” to prevent genetic disease among future generations of Ashkenazi Jews. Individuals described the tension between their experience of the cultural importance of “marrying in” as a mechanism to ensure future generations of Jews, while they simultaneously contemplated whether this history of endogamy was to blame for disease. While the genetic impact on a population will vary depending on the type of mutation in question – dominant versus recessive mutations for example – and may have limited impact on overall population prevalence, the notion that marrying out could “improve the gene pool” by reducing disease in future generations was surprising given the important role of endogamy in ensuring future generations.
On a lighter note, people would often mention that I looked like a relative or reminded them of someone they knew. They might question whether our ancestors had been “on the same boat” when they arrived in America. They might refer to the importance of being born to a Jewish mother to be considered Jewish. All of these acted as reminders of the subtle and not so subtle ways that Jewish identity is partially constituted by shared narratives that may involve blood relations, common genealogy and ancestors.
Many people of different backgrounds, religions, and ethnicities are seeking genetic testing. What are some of the challenges and questions raised by genetic testing that are specific to Jewish people?
This is a very important question that highlights questions of equity and disparity regarding genetic testing, population, and race/ethnicity. Genetic testing among Ashkenazi Jews illustrates both these potentials perfectly. As I mentioned above, Ashkenazi Jews are the most well studied population in genetics and are over represented in research. One result is that much is known about genetic disease among Ashkenazi Jews, the mutations are well characterized, and risk estimates for various diseases and mutations are well known. Awareness among health care professionals about genetic disease and testing specific to Ashkenazi Jews means that testing is more likely to be offered, and may in fact be less expensive (when tests are bundled on “Ashkenazi Jewish” panels for instance). There are benefits to this knowledge and subsequent genetic testing such as increased reproductive choice for parents and the elimination of disease among prospective children and future generations.
Yet these benefits may be unevenly distributed if less is known about genetic disease risk and mutation prevalence among other less well studied populations. Two examples illustrate the potential harms. During my fieldwork working on BRCA genetic testing in the UK, leaflets started to appear in genetic clinics where I was conducting fieldwork to raise awareness that Tay Sachs – the most well known and archetypal “Ashkenazi Jewish Genetic Disease” – was also present among the Irish, and that testing could be warranted among these families as well. When diseases become associated with one particular racial/ethnic group (sickle cell is another example) we may be blinded to the risk for others who fall outside our preconceived notions of which groups are at risk of genetic disease. A second example involves the underrepresentation of African American women in BRCA research. One consequence of under-sampling African Americans is that the BRCA mutations are less well characterized making risk estimates more difficult and leading to a higher rate of Variants of Uncertain Significance (VUS) among African American women who undergo BRCA testing. There are numerous interwoven reasons why African Americans are under represented in genetic research, but regardless of the reasons, inadequate representation in research can lead to harms whether due to an almost exclusive association of a disease with one particular population or gaps in knowledge for entire populations.
Some people are extremely opposed to making connections between genetics (especially genetics related to disease) and Jewish identity, arguing that equating Jewish identity with biology was one of the factors that enabled the Holocaust. What is your opinion on this?
This is an understandable and frequently raised concern. I am especially sympathetic as one of the initial stimuli for this research was my own surprise and discomfort with the emphasis on Ashkenazi Jews that I encountered working in genetic breast cancer research studies. The history of discrimination and isolation of Ashkenazi Jews, including the use of biological arguments regarding inherent Jewish difference and inferiority, pre-date the Holocaust and are formative aspects of Jewish history, culture, and identity. In light of this history, concerns about genetics are entirely understandable. But we also must avoid a common tendency to associate any and all discussions of contemporary genetics with the malevolent and racist eugenic agendas of the past. Without negating the tremendous impact of the Holocaust for many Jews, there are important differences with contemporary medical genetics that are worth pointing out.
In the first instance, medical genetics in its current form is markedly different to the state mandated eugenic programs of the late 19th and first half of the 20th century. While these eugenic programs were often framed as being about improving health, they used involuntary means and targeted questionable heritable traits that are distinct from the ethos driving contemporary medical genetics. In its current form, medical genetics is most often aimed at providing individuals with options for eliminating or preventing serious, fatal, disabling and often untreatable biomedical diseases. Much of contemporary medical genetics is undergirded by what are arguably “eugenic” goals such as prenatal genetic screening and the use of preimplantation genetic diagnosis to avoid passing on a familial BRCA mutation. The point is not to claim that contemporary medical genetics is equivalent to “eugenics” as practiced historically, but rather to emphasize that there are important differences and conflating current genetics with the eugenics of the past is an oversimplification that may fail to recognize the benefits that can arise from contemporary genetics. This is perhaps best illustrated by the fact that for some Ashkenazi Jews, the loss of 6 million Jews in the Holocaust and subsequent demographic concerns about maintaining the population, actually endorses the need for medical interventions that improve health, and potentially reduce disease in future generations.
Here again, remembering that Jews came out in large numbers to participate in early Tay Sachs screening programs, and continue to be active participants in genetic research and testing programs, highlights how Jews have shaped their relationship with contemporary medical genetics as much it has shaped them.
Interview by: Alexandra Nichipor, MTS