Relative Risk

Measuring Kinship for Future Health in US Genetic Counseling

in Social Analysis
Author: Anna Jabloner1
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  • 1 Sociocultural Anthropologist and Lecturer, Department of Anthropology, Harvard University, USA jabloner@fas.harvard.edu

Abstract

Genetic counselors in the US assess disease risks by drawing on family histories, genetic tests, and patients’ racial, ethnic, national, or religious self-identifications. The bodily risks of kinship articulated by family histories can be defused by genetic tests that highlight the contingency of biological inheritance and decouple kinship from genetics. However, such tests, as well as self-identifying patients, also entwine genetic risk with older indicators of kinship: biologically understood race and ethnicity. Across these scales, counselors calculate relative risks to the future health of individuals, in the process measuring kinship as genealogical closeness, genetic dis/similarity, and biocultural race and ethnicity. As counselors personalize the universal promises of genomics at a biomedical nexus of risk and prophylaxis, they tap into anxieties about the changed natures of American kinship.

In genetic counseling, a medical profession that focuses on inherited diseases, kinship is key to the identification of health risks. By eliciting family histories of disease, and in combination with genetic tests and information about patients’ identities, genetic counselors evaluate risks and work up diagnoses and prognoses (Featherstone et al. 2006). During my 2012 fieldwork in San Francisco, I rushed to jot down a chart while observing a class for genetic counseling students. As a real-world example of a clinical case, the instructor, a genetic counselor, had sketched what she called a kinship chart on the white board with a practiced hand, while the 12 students and I tried to copy it in our notes accurately. The chart illustrates how counselors worked up a patient with inherited adrenoleukodystrophy—a severe but rare neurological disease caused by a genetic mutation—through a visualized network of affected and unaffected kin (fig. 1). In this case, the instructor explained, either the patient was unsure about how many of a relative's children were affected, or the counselor missed it—or it might have been lost in the normal uncertainties of communication in the clinic. She emphasized that students should expect missing links as counselors often work with incomplete information. She lamented that patients always have blind spots when it comes to their familial networks, in terms of the diseases that relatives are afflicted by and the relatives whom patients would talk about or prefer to ignore (cf. di Leonardo 1987).

Figure 1:
Figure 1:

Sketch of a kinship chart used in genetic counseling instruction

Citation: Social Analysis 65, 4; 10.3167/sa.2021.650406

In such charts, patients are indicated by an arrow, and their unfolding stories about affected relatives are drawn upward by the counselor as they traverse the generational tiers, explaining about their aunts and uncles who had children—how many, they often cannot remember. The resulting diagrams aid in the construction of diagnoses, clinical interpretations, and treatment strategies. Such kinship charts “replicate the common visual form of genealogical family trees” (Gibbon 2002: 432) and enable the construction of familial networks of heritable or non-heritable diseases, within which specific disease risks for a patient lie (cf. Povinelli 2002). Before genetic testing for complex diseases became widely available in the United States, genetic counselors specified diagnoses and prognoses predominantly through the reconstruction of available family histories—grounded in the principles of inheritance that apply to genetic diseases.

This article focuses on the work of clinical genetic counselors in the US, using the analytic lens of this special issue to highlight how counselors, in efforts to prognosticate the health risks of individuals, ‘measure kinship’ in multiple ways (see Thelen and Lammer, this issue). During fieldwork in two genetic counseling training programs in Northern California from 2012 to 2014, I tracked how counselors also draw on and negotiate the uses of genetic tests that are grounded in the idea of similarity between the genetic risks of individuals and populations (Gibbon 2016; Jabloner 2022; M'charek 2000). Such populations are not just embedded in contemporary frameworks of racial genetics (Fullwiley 2014), but signal histories in social and biological anthropology of their “constant, and intentional, slippage [into] more typological notions of race” (Braun and Hammonds 2012: 76). Finally, US counselors elicit ethnic and racial self-identifications from patients to prognosticate risk and pursue testing and other strategies from such terms of belonging, similar to the self-identification techniques used in South African genomics (Schramm, this issue). Thus, not only are genealogies produced and interrogated in genetic counseling, kinship is multiply articulated as genealogical closeness, as genetic similarity, and as biocultural race and ethnicity. In the following, I present five short ethnographic scenes of genetic risk assessment and show how, in the process of evaluating risk and deciding on courses of (in)action, counselors translate between or mitigate the resulting kinship measurements. Grounded in these negotiations, access to resources is also often adjudicated.

To indicate that the risks counselors assess exist in the comparison of different groups, however construed, I utilize a concept from statistics: ‘relative risk’. In clinical medicine, its comparative nature qualifies such relative risk vis-à-vis absolute risk, that is, the probability of an adverse event (Minkoff and Marshall 2016). Here I amend relative risk with a second, familial sense to suggest a kind of relative who threatens future health: ‘risky kin’ (cf. Featherstone et al. 2006). In genetic counseling, relative risks in these two senses can work against each other, for instance, when genetic testing undoes the narrative of risk provided by a kinship chart. When tests reveal the absence of genetic predispositions, biological dissimilarities with relatives are uncovered. However, when genetic tests and patient self-identifications—used on the grounds that they indicate the similarity of genetic risks between populations and individuals—reveal race or ethnicity, these categories are not only renaturalized as biological relatedness, but new relatives can be uncovered. When the intimate matters of individual bodies are related to genetic populations, new risks to health—and new kin—may appear.

As genomics has moved to calculating risk probabilities for multi-factorial diseases, in addition to genetic contributions to complex traits, and is widely advertised to US health consumers, the scenes below capture an asymptomatic self who has been pulled into dynamics between risk and prophylaxis, such as the ‘previvor’ or the ‘patient-in-waiting’ (Comfort 2012; Rose 2008; Thompson 2012; Timmermans and Buchbinder 2010; Wailoo and Pemberton 2006). To be sure, counselors continue to care for symptomatic patients with severe diseases that often require lifelong management, and many bemoan the fact that health risks have, at this time, become so central. Alongside many changes, family histories remain a cornerstone of this work. Just as crucially, race and ethnicity remain key categories in counseling even as these categories, and the natures that underlie them, are constantly unsettled/reinstated in US genomics and public culture (Abu El-Haj 2007; Bonham et al. 2016; BuzzFeed 2018; Jabloner 2019; Palmié 2007).1

Genealogies and early forms of genetic testing are indeed central in the profession's history. Genetic counseling in the US originated in eugenic medicine, in which so-called heredity counselors conveyed reproductive futures to patients regardless of their wishes (Stern 2012). In this context, similar traits across generations were constructed as heritable and mapped onto ‘degenerate’ families (McKinnon, this issue). In the 1970s, the Women's Health Movement, in which American women demanded the overhaul of a paternalistic medical system, drew many contemporary senior counselors to the field at a moment of its professional consolidation. Centering now on patient autonomy, non-directiveness, and disability rights, genetic counseling became a solidly middle-class career for a generation of educated, mostly white, American women, a history reflected in current industry demographics (Murphy 2012; Rapp 2000; Stern 2012).2 Since then, training programs across the US have multiplied, and counseling has expanded into non-clinical settings (Clarke and Thirlaway 2011; Finucane 2012). Considering the profession's eugenic origins, today's genetic counselors are in a profound bind: numerous counselors remarked in interviews on their increasing ethical conflicts as consumer genomics expands (cf. Parham et al. 2017). Counselors continue to support patient decision making and to operate as clinical advocates while developing normative frameworks about amassing genetic and genomic data (Hallowell 1999; Navon 2012; Palmer and Sainfort 1993; Rapp 1988, 2000).

Given the enduring technological fantasy of forgoing the interpretive effort—Marilyn Strathern (1995: 116) remarks that “genes are imagined as the messages themselves”—genetic counselors’ work has received less attention than the predictive horizon raised by genomics, a fact that also relates to the field's gendered history. As genomics is brought to market with the promise that futures are pending, counselors work to translate what this means and thereby make genomics personally applicable (Jabloner, n.d.). Counselors not only mitigate increasing anxieties caused by the uses of tests (cf. Werner-Lin et al. 2017), they mediate between new forms of probabilistic future making offered by US industries and proactive individuals who approach counselors with projects and anxieties relating to the changed natures (perhaps no longer fixed, perhaps malleable) underlying American kinship across a range of measurements.

Denaturalizing Risky Kinship

In an interview, genetic counselor and molecular biologist Betty Khan told me about a patient who came to her, already scheduled for prophylactic surgery.3

BK: Her two sisters and her mom … all had had ovarian cancer. And one of her sisters … had testing, and she was found to have the BRCA mutation4 and this sister never had children. And she and her husband came in and she was booked the next day … for an oophorectomy to have her ovaries removed. Because she …

AJ: She booked it before she knew the results?

BK: She hadn't had testing! She booked her surgery.

AJ: And they let her do that?

BK: Yea, because she had a family risk. And you're not obliged to have testing … I mean she is at very high risk, she comes with a predisposition to having ovarian cancer … as far as she was concerned, it was just, it was going to happen. It was just when? She … kind of passed that age where she would have children, but she had chosen to not have children. She carried this for all her life, because her mom had had ovarian cancer. We [told her], “You know there is an answer to why this happened in the family, you have a test … it's a 50/50 percent chance. And she's … thinking about having the testing, because “there is a chance that you didn't inherit what your sister inherited, right, we do know why that happened to your sisters and your mom. Then if you were negative, your risk would go down to the [general] population.” And she was kind of like, “No, I feel like I need to do this. And her husband was like, “Let's just think about this: we don't just lop off random body parts!” And he said it that way because he really understood … that if you're not at risk … think about this, actually … And she tested negative!

AJ: Really! And she didn't have the surgery?

BK: She tested negative … I don't know if she went and had it, I suspect she didn't. Because I suspect she processed it. But you think, wow … I think a lot of the reason she didn't have kids … would have been because of this, and it was … her whole identity …

AJ: … was based on living with this …

BK: … living with this high risk!

In the US, prophylactic surgical removal of ovaries can be recommended and performed even when patients decline genetic testing, making a family history pervaded by disease the authoritative technology in the clinical decision. Genomic technologies, however, can show when predispositions are not inherited and can become signposts of a different future for patients and for counselors. This particular patient had taken her kinship to be risky and to mean that she would develop cancer like her relatives, absorbing narratives of shared risk. Such ideas about “hereditary transmission build on American cultural conceptions of kinship” (Finkler 2001: 235). But in this case, a genetic test recalculated a personal measurement of relative risk.

As Khan sees it, a deep sense of belonging within a familial network that is built on an assumption of similar risk was at stake. According to her analysis, the test reframed all of the patient's waiting for the disease to unfold that had already happened and perhaps had even influenced her decision not to reproduce. Importantly, it liberated the patient from a sense of doom. The negative test result disproved her strong personal assessment of being at risk and became meaningful when it changed her experience of living with the certainty of eventually getting cancer—it was just a matter of when—to having a normal risk of cancer that did not warrant pre-emptive action, no matter how strong the family history.

Assessing kinship as closeness and similarity (Strathern 2020; cf. Thelen 2021) created the profound positionality of someone at risk, a positionality that can be biomedically recognized through prophylactic intervention. Amid promotional calls for patient empowerment in consumer genomics, genetic counselors constantly negotiate such scenarios, often conveying uncertainty in a way that still leaves patients feeling entitled to clinical choices. Within this growing industry, fantasies about genetic destinies, along with the hope to prevent the passing on of critical genes, have become embroiled in predictive biomedical infrastructure. Here, an arguably American inclination to assert control over the future is legible in a new knowledge system about biological similarity. Recently developed technologies for assessing inherited risk suggest that ambiguities are also produced as previvors might then see not just their futures but their familial belonging in a new light, for instance, by realizing that their relatives are not quite as materially similar as they had imagined (Goldfarb and Schuster 2016).

Desires for Genetic Testing: Memories of War in Assessing Relative Risks

After months of negotiations and after signing many forms, I was invited to attend a weekly clinical case conference hosted by a San Francisco Bay Area genetics department. About a dozen genetic counselors met there to discuss cases with the attending medical geneticists, pathologists, pediatricians, and other specialists. Counseling trainees also attended these sessions, and I began to see many of the students whose classes I was observing.

One week, senior genetic counselor Ruth Levy asked for advice about a patient who thought she might be developing Parkinson's disease, a disease of uncertain causation that is genetic in a small percentage of cases. The asymptomatic patient wanted to get a genetic test because her livelihood as a massage therapist depended on the use of her hands. Believing that many members of her family had undiagnosed Parkinson's, she was anxious to know what the future holds for her, and she approached Levy with an assessment of her own relative risks. Levy described how the patient told her about her “large family from Croatia” and the “tremors” they suffered. Levy asked the other experts in the room whether such tremors could be an indication for late-onset Parkinson's. Apparently, the patient's family had lived through the war in the former Yugoslavia, the mother had schizophrenia, and anti-psychotic medications could have been causing the tremors that the patient perceived as a sign of Parkinson's. The stories—connecting kinship, memory, geographies, and intimate narratives about family diseases and belonging—floated around the room as Levy passionately conveyed the patient's search for answers and signs of times to come.

The geneticists and counselors started arguing about the meanings of these tremors and whether they might be related to Parkinson's disease. Levy asked if she should send her patient to consumer genomics company 23andMe, which, she had heard, offers a test that calculates the probability of developing Parkinson's. The responses were skeptical. Some validated such a test, reporting one number that expresses the probability of getting something in the future (or not). Most thought that the test would cause more harm than good because there are no available clinical interventions. Toward the end of the discussion, a physician said that at least four genes were presently associated with this disease and more may be connected to it in future research, so there was no genetic test for Parkinson's disease. Everyone finally agreed that however the probability was calculated, whatever such a number represented would just indicate uncertainty. In a disease with a vague genetic link, no genetic testing was recommended based on family history. The case is telling about the mitigating effects of genetic counselors’ measurement work: their assessment of relative risk through genealogical closeness was crosscut not only by a disease with a weak genetic link, but also by the memories and family histories of trauma and war reported by the patient. The patient's view of her kinship translated into the threat of a dreaded disease with similar risks for her own future that she was now trying to mitigate.

The hope elicited by a new genomic test motivated an asymptomatic person to visit a genetics clinic, where she urged a counselor to order a test for Parkinson's disease and debated the meanings of tremors and the impact of war in her family's history. She may have been reached by marketing in a professional context, at a church or community center, or through her child's school (Joseph and Dohan 2012). Genomic testing evaluates this risk and in so doing seems to offer a way to control it. Patients regularly draw genetic counselors into such searches, conveying their aspiration to benefit from a test and any additional information. Counselors respond to patients’ desires to manage uncertainty, and in the ensuing deliberations, both patients and genetic counselors mobilize indicators of kinship, but they weigh these indicators differently in the process of assessing risk. Negotiating access to resources such as a genetic test relies on family histories and, here, national belonging via biographies and genealogical closeness. In this case, however, the assumed similarity of risk based on genealogical closeness remains contested.

Relative Risk and Indicators of Kinship

In another case conference, counselor Maria Hoffman presented a patient's family history of breast cancer in the last three generations and a major clinical miscommunication. Her initial patient was recommended for BRCA testing for a genetic predisposition for cancer. Subsequently, the patient's 22-year-old daughter was also tested and had negative results. Despite this, the daughter was scheduled for a prophylactic double mastectomy, pointing to a miscommunication between counselors and surgeons. Someone in the conference mentioned that this young woman was overweight and might have seen the surgery as an opportunity for a free breast reduction. Doubting this, Hoffman said that the daughter seemed to understand clearly what was being communicated—that while she was identified as having a heightened risk of having inherited a predisposition for cancer due to her family history, she was not recommended for surgery because of her negative test result.

After four days of phone calls during which Hoffman tried to reverse the decision, the surgeons learned of the patient's negative test result and called off the operation in the nick of time. After this, Hoffman recounted, sounding almost disappointed, the patient “just falls off the face of the earth.” To the counselors, the miscommunication aspect of the story was mildly shocking. But, they told me, prophylactic surgeries may be recommended in ovarian cancer as the lesser of two evils: if one delays it until cancer is diagnosed, it is often already too late. The benefits of prophylaxis, they stated, outweigh the potential harms (Aronowitz 2007). A bilateral prophylactic mastectomy for a healthy 22-year-old seemed conceivable and normal. A queer reading is possible here: maybe the daughter understood her situation and simply wanted the surgery.

Relative risk was not all that was at stake in this case. Indeed the full scope of American biomedical culture seemed bound up in the counselors’ discussion: rumors, weight, the class and race connotations of being overweight, clinical surveillance and how people slip away, unaffordable medical procedures, and situated interpretations of how someone understands ‘what is being communicated’ about risk when this term itself is hopelessly vague but associatively rich (Benson 2012). As a signpost for her future, the test enabled a young woman—whether she wanted the surgery or not—to temporarily resituate herself in a biomedical apparatus that ceaselessly pulls people into the affective registers of statistics (Jain 2013; Sosa 2022; Woodward 2008).

As in Khan's case, measurements of kinship as genealogical closeness were crosscut by measurements of kinship as genetic dis/similarity. The negative test result might have ‘loosened’ kinship ties in a similarity lens: it shifted a healthy person's framework from presumed high risk due to family history to the normal risk of what clinicians call the general population. Because the daughter did not inherit a genetic predisposition to cancer, her risk was the same as that of most others in the US, and prophylactic surgery was not recommended. In another measurement of kinship, she now belonged to a general American population.

Taming Relative Risk by Translating between Kin Measurements

During this same conference, heated discussion erupted around another case in which a 12-year-old healthy girl had a pervasive family history of breast cancer. Senior counselor Susan Bix reported on the parents’ suggestion of genetic testing for their daughter: they proposed that their daughter should not be told about the test or its outcome. Should counselors recommend testing the girl? Should they wait for the daughter to ask for a test herself? Would a 12-year-old need to give consent? Was the parents’ wish not to tell their daughter about her potential risk justified, given the psychological harm such threatening knowledge could inflict? The countless ethical questions—always present and so often unanswerable in this context—clearly weighed on the counselors as they negotiated a potential patient's care (Featherstone et al. 2006; Jabloner 2015).

The counselors agreed that it would be valuable to know if the girl had a genetic predisposition for breast cancer. They assumed that they would remain involved in this family's healthcare for many years, and that not just present but potential future care was at stake; therefore, interventions in the present might offset more invasive, or costly, ones in the future. But what, they asked, would a negative test result mean? It would not add much, the counselors said, because the girl would still need to first live her life, accruing risk factors and perhaps developing a different type of cancer later in life. Only a positive test result, indicating an existing genetic predisposition to breast cancer, would add something: it would articulate a positive risk in the girl's unfolding future. With this potential, most genetic counselors were anxious to have the results and to recommend testing. Others were conflicted about such speculative information, communicated or not. Some emphasized the cost of testing and non-existent intervention options. In the end, it was decided that genetic testing seemed inappropriate. Bix then had to manage the parents’ disappointment upon not being offered a test they themselves had suggested.

Counselors often discussed patients’ guilt about passing on bad genes and their wish for testing because they hoped for good news, meaning the absence of inherited predispositions. Knowing that they had not passed on such genes would assuage their guilt, while taming potential risks. With myriad other risks to worry about as parents, this particular one could easily be eliminated through a simple test. But in the scenario of a positive test result—indicating a predisposition for breast cancer—the future would involve exams, treatments earlier in life, and maybe prophylactic surgeries. Plus, the family was concerned about creating a new worry in their daughter's life. At 12 years of age, the term ‘risk’ likely had little meaning for her.

Beyond the cost-benefit analyses of testing, counselors convey the meanings of data for a specific person, folding it into careful predictions and caring words. They mitigate the psychosocial effects of the ongoing biomedical production of health risks (Dumit 2012), intensified through the availability of genetic testing for US consumers (Kliff and Bhatia 2022). Bix had to counsel the family regardless of her professional interest in the test results or future treatment options, framing what taking this test meant vis-à-vis the parents’ understanding, and managing how this family experienced relative risk and knew about an aspect of their material similarity. The parents’ desire to learn but shield their daughter, as well as withhold results from her, presented Bix with layers of demands. Again, ‘less similar’ kinship, measured through genetic predisposition, was the desired outcome. In her decision about what was necessary, useful, or appropriate, Bix negotiated anxieties about present and future relative risk by translating between different approaches to kinship as genetic relatedness, as descent, and as care.

Refractions of Kinship: Religion, Race, Nationality

At the medical center where I conducted fieldwork, a line on patient intake forms asks for ‘country of origin’, as is common practice in US clinical genetics. These forms were projected on a screen during case conferences, showing how many different types of entries patients made on this line. I noted, among others, Fiji, Jewish, Scottish-German, Asian, Middle Eastern, White, Black, and Mexican. Asked to state their country of origin, some patients refer to their ancestors, some to birthplace or region, some to religion or skin color. Vastly different types of categories are elicited when counselors ask patients to identify during consultation. Patients may volunteer the information or provide it when asked. If counselees refuse to give a direct answer, genetic counselors can use kinship charts for clues about ancestry or background. Even if these charts seem free of moral evaluation today, they are nonetheless cast in terms of social difference (McKinnon, this issue). Coded or obvious, taxonomies of personhood that derive from older discourses about kinship and heredity and indicate forms of belonging frame the counseling encounter, as, for example, when a kinship chart describes a relationship as ‘consanguineous’, or related by blood (cf. Müller-Wille and Rheinberger 2007). I learned that the term, which counselors use when cousins intermarry, is code for marginalized groups and those considered ‘backward’ (McKinnon 2016).5

Counselors work within a broader framework of ubiquitous racialization, sometimes with explicitly anti-racist aims in frameworks of inclusive and equitable care (Bliss 2012; Epstein 2007; Schramm, this issue). A scribbled ‘Mexico’, then, may prompt an inquiry into consanguinity and diabetes, while ‘Jewish’ signals an alertness to specific cancers, and ‘African American’ a look at possible sickle cell disease. Each term is weighted with cultural associations. The difficulty of looking beyond the clinical stereotyping of patients also becomes clear in this context where genomic testing and racial categories are mutually compounding (Kleinman and Benson 2006; Roberts 2011b; Taylor 2003).

When I asked medical geneticist Katherine Mason about so-called Jewish genetic panels, which assess risks for diseases statistically found more often in populations with Ashkenazi ancestry and are popular in the US (cf. Mozersky 2013), the following exchange ensued:

AJ: I'm really interested in these categories. For example, the discussion [that the counselors] were having where there are two women with melanoma and one of them is Jewish and gets asked …

KM: She gets offered a genetic test.

AJ: And she has a higher risk because of a certain statistical calculation. You end up with a ‘Jewish panel’, which I think a lot of people would find very problematic … because you could just marry a Jew or convert, so then it's not really genetic.

KM: But we wouldn't offer it to somebody who was just a converted Jew, you definitely have to be.

AJ: But how do you prove that?

KM: No it's true, I mean you ask where somebody's ancestor came from.

AJ: Ancestors, okay.

KM: Could there be somebody Jewish in their background that they just didn't know about? Yes, of course.

The consequences of translating population-based risks into individual risk in the clinic are clear: in this case, one woman, after self-identifying as Jewish, is offered a genetic test whereas another is not. Mason highlights the genetic risk of those who, biologically, carry ‘Jewishness’ within their bodies, having inherited it, but may not know of it or have an identity to match this measured ancestry. Similarly, 23andMe describes reactions to BRCA testing by stating that “six mutation carriers did not report Ashkenazi Jewish ancestry—need to consider that many with mutation may not be aware of such ancestry” (Francke et al. 2012). The implication is that despite the mutation carriers’ failure to ‘report’ such ancestry, it has always existed in their bodies. People at risk for breast cancer might then be revealed as (at least partially) Jewish, and also acquire new kin. The search for Jewish ancestry in the bodies of those who do not know about it—or have measured it as close or ‘kin enough’ (Moretti, this issue)—of course evokes the historical specter of the preoccupation of Nazi and race science with the mixed and impure, and of long-standing racial paranoias about invisible essences and the illicit crossing of lines of belonging (Black 2003; Gross 2008; Haraway 1997; Ordover 2003; Teicher 2014, 2020; Weiss 2010).

In California in 2012, one woman with a melanoma who identified as Jewish was offered a genetic test for a predisposition to cancer. Her self-identification was affirmed as clinically relevant, and her Jewishness coded as biological. The other patient, who also had melanoma, did not get the test, and her biological identity remained veiled. In her work as a medical geneticist in a Californian clinic, Mason serves as a kind of broker of such questions of descent and belonging. When Mason says that conversion does not count for access to the test and that “you have to be” Jewish, she also references a long-standing struggle over authenticity, that is, of viewing biological kinship as the real basis of membership, and conversion as less than real or constructed (Egorova 2010; M'charek 2013; Tamarkin 2020). The idea is that pure groups once existed that excluded not only conversion but also intermarriage or (god forbid) unmarried intercourse. But perhaps a deviant distant relative of the patient's had converted, disregarding both the religious authorities’ and contemporary genomics’ measurement of Jewish kinship, and unknowingly tainted for eternity the accuracy of data from ‘self-identifying’ Jews (Kahn 2000).

Patients use a range of categories to self-identify, and it is unclear how such elicited terms of belonging correspond to genetically measured ancestries and the biologies that genomics uncovers based on the data of self-identified populations (Marks 2013). The integrity of the category ‘Jewish’ is here grounded in an ideology of history in which a past that is accessible through a body's molecules becomes the source of authoritative knowledge about risks (Abu El-Haj 2012; Schramm, this issue). Geneticists and genetic counselors negotiate such terms, updating or ‘improvising’ race, ethnicity, religion, or nation in relation to their patients’ idioms of identity (Valdez 2019). In the process of measuring risk and kinship, counselors and geneticists then also adjudicate access to important medical resources.

Conclusion

In a clinical context, I have described how genetic counselors assess health risks through kinship charts, genetic tests, and patient self-identifications. Counselors translate between these modalities, with the result that relative risk may be tamed when tests show that genetic predispositions have not, in fact, been passed on. And despite the newness of the genomics enterprise, old racial categories of belonging reappear as biological substance that can reveal a risky future as well as new or unknown kin (Carsten 2001; Thompson 2005). US counselors operate in a context wherein biomedicine and genomics have brought back with full force the racial, ethnic, and religious categories disavowed by an earlier paradigm of genetics, and have intensified cultural associations of race, risk, and disease (Doucet-Battle 2021; Jabloner 2022; Lee 2013; Olofsson et al. 2014). The ethnographic vignettes show how counselors translate different indicators to make prognoses, how they respond to patient desires, and how attempts to tame relative risk when predicting future health generate different measurements of kinship and ongoing negotiations of social belonging.

The above negotiations are significant for anthropologies of kinship and science because they show how genetics itself provides different kinds of accounts (Franklin 2019). On the one hand, race and ethnicity are renegotiated in genetic counseling not just as biological categories but as bodily similarities of racial, ethnic, and religious groups, becoming signposts of relative risk, and revitalizing what Sarah Franklin (2001: 316), in reference to Donna Haraway, called “bloody kinship.” The described negotiations concern an old paradigm about the biological kinship of Jews. More generally, when the genetic risks of populations are translated to individual risks, risk itself can become a racializing technology that works in the clinic to “undermin[e] equitable healthcare” (Bell et al. 2019: 224; cf. Doucet-Battle 2021; Fujimura and Rajagopalan 2011; Hunt et al. 2013), while genomics’ authority as adjudicator of identity intensifies (Abu El-Haj 2012). Epstein (2007), Fullwiley (2007), Lee (2008), Reardon (2017), and Roberts (2011a) have made clear how detrimental such a transposition of inequality onto biology is in a context where racial health disparities are extreme—as the COVID-19 pandemic's unfolding in the US has thrown into stark relief (Gravlee 2020). Naturalization, in the language of feminist kinship studies, is a powerful political process that continues to be “productive … of social inequalities” (Franklin and McKinnon 2001: 4; emphasis in the original; see also Franklin 2019).

And yet, in the scenes above, ideas about biology and biological relatedness—in the form of the material similarity of risks—are also upended. In the multiple translation processes of genetic counseling, biological relatedness is sometimes denaturalized into something else. Analyzing how relatives can achieve material similarity in a multitude of embodied ways that crosscut natural and cultural domains, Goldfarb (2019) contends that (some) anthropologists have purposely kept kinship in the domain of culture, based on their presumption that biology is deterministic. But as she argues, grounded in the work of Franklin (2001, 2013), Haraway (1997) and others, genomics and the life sciences have themselves “defamiliarize[d] the very nature of what it is to … be biological” (Franklin 2001: 303). Indeed, the futures promised by genomics seem up for intervention, not predestined, and perhaps even signal the indeterminacy inherent in what neuroscientist Deboleena Roy (2018) calls the ‘becomings’ of life. As counselors assess relative risks to future health, they mitigate anxieties that pertain to the changed natures of American kinship. In the process, a range of expanding, contracting, overlapping, or antithetical kinship indicators, shifting parameters of material evidence for kinship, and the making and breaking of links between kin closeness and similarity persistently de- and reconstruct racial, ethnic, and religious differentiations and their concomitant inequalities.

Acknowledgments

I wish to thank Tatjana Thelen and Christof Lammer for their engagement, feedback, and inspiring efforts in bringing this special issue to fruition. Numerous others provided invaluable feedback, in particular Jay Sosa and Steph McIsaac, as well as Erin Moore, Malavika Reddy, Adam Sargent, and the participants at the Bowdoin College workshop “Health, Culture, and Society.” The Wenner-Gren Foundation and the University of Chicago funded the research on which this article is based, and I gratefully acknowledge this support. Lastly, I thank the genetic counselors and geneticists who enabled this research and took the time to talk with me about their work.

Notes

1

Precision medicine, for instance, promises an individual based, so-called ‘n-of-1’ healthcare that makes population categories superfluous, yet it also constantly reproduces racial and ethnic categorizations (cf. Jabloner 2022; Juengst et al. 2016; Meagher et al. 2017).

2

These numbers might be rapidly changing as the industry is growing.

3

All names are pseudonyms.

4

BRCA1 and BRCA2 are genes of which certain mutations increase someone's probability of developing breast and ovarian cancers over a lifetime. If a person inherits these mutations, which is what BRCA testing assesses, their risk of developing these cancers rises dramatically.

5

This came as a surprise to me. Austrians tend to associate consanguinity with the Habsburgs. While sometimes mocked as backward, they of course enjoy much higher social status than the groups referred to here.

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  • Aronowitz, Robert A. 2007. Unnatural History: Breast Cancer and American Society. New York: Cambridge University Press.

  • Bamford, Sandra, ed. 2019. The Cambridge Handbook of Kinship. Cambridge: Cambridge University Press.

  • Bell, Hannah S., Funmi Odumosu, Anna C. Martinez-Hume, Heather A. Howard, and Linda M. Hunt. 2019. “Racialized Risk in Clinical Care: Clinician Vigilance and Patient Responsibility.” Medical Anthropology 38 (3): 224238. https://doi.org/10.1080/01459740.2018.1476508

    • Search Google Scholar
    • Export Citation
  • Benson, Peter. 2012. “Commentary: Biopolitical Injustice and Contemporary Capitalism.” American Ethnologist 39 (3): 488490. https://doi.org/10.1111/j.1548-1425.2012.01376.x

    • Search Google Scholar
    • Export Citation
  • Black, Edwin. 2003. War against the Weak: Eugenics and America's Campaign to Create a Master Race. New York: Four Walls Eight Windows.

  • Bliss, Catherine. 2012. Race Decoded: The Genomic Fight for Social Justice. Stanford, CA: Stanford University Press.

  • Bonham, Vence L., Shawneequa L. Callier, and Charmaine D. Royal. 2016. “Will Precision Medicine Move Us beyond Race?New England Journal of Medicine 374 (21): 20032005. https://doi.org/10.1056/NEJMp1511294

    • Search Google Scholar
    • Export Citation
  • Braun, Lundy, and Evelynn Hammonds. 2012. “The Dilemma of Classification: The Past in the Present.” In Genetics and the Unsettled Past: The Collision of DNA, Race, and History, ed. Keith Wailoo, Alondra Nelson, and Catherine Lee, 6780. New Brunswick, NJ: Rutgers University Press.

    • Search Google Scholar
    • Export Citation
  • BuzzFeed. 2018. “How Not to Talk about Race and Genetics.” Commentary posted on 30 March. https://www.buzzfeednews.com/article/bfopinion/race-genetics-david-reich.

    • Search Google Scholar
    • Export Citation
  • Carsten, Janet. 2001. “Substantivism, Antisubstantivism, and Anti-antisubstantivism.” In Franklin and McKinnon 2001b, 2953.

  • Clarke, Angus, and Katie Thirlaway. 2011. “‘Genomic Counseling’? Genetic Counseling in the Genomic Era.” Genome Medicine 3 (1): 7. https://doi.org/10.1186/gm221.

    • Search Google Scholar
    • Export Citation
  • Comfort, Nathaniel C. 2012. The Science of Human Perfection: How Genes Became the Heart of American Medicine. New Haven, CT: Yale University Press.

    • Search Google Scholar
    • Export Citation
  • di Leonardo, Micaela. 1987. “The Female World of Cards and Holidays: Women, Families, and the Work of Kinship.” Signs: Journal of Women in Culture and Society 12 (3): 440453.

    • Search Google Scholar
    • Export Citation
  • Doucet-Battle, James. 2021. Sweetness in the Blood: Race, Risk, and Type 2 Diabetes. Minneapolis: University of Minnesota Press.

  • Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham, NC: Duke University Press.

  • Egorova, Yulia. 2010. “DNA Evidence? The Impact of Genetic Research on Historical Debates.” BioSocieties 5 (3): 348365. https://link.springer.com/article/10.1057/biosoc.2010.18

    • Search Google Scholar
    • Export Citation
  • Epstein, Steven. 2007. Inclusion: The Politics of Difference in Medical Research. Chicago: University of Chicago Press.

  • Featherstone, Katie, Paul Atkinson, Aditya Bharadwaj, and Angus Clarke. 2006. Risky Relations: Family, Kinship and the New Genetics. Oxford: Berg.

    • Search Google Scholar
    • Export Citation
  • Finkler, Kaja. 2001. “The Kin in the Gene: The Medicalization of Family and Kinship in American Society.” Current Anthropology 42 (2): 235263. https://doi.org/10.2307/3596413

    • Search Google Scholar
    • Export Citation
  • Finucane, Brenda. 2012. “2012 National Society of Genetic Counselors Presidential Address: Maintaining Our Professional Identity in an Ever-Expanding Genetics Universe.” Journal of Genetic Counseling 21 (1): 36. https://onlinelibrary.wiley.com/doi/full/10.1007/s10897-011-9466-6

    • Search Google Scholar
    • Export Citation
  • Francke, Uta, C. Dijamco, A. K. Kiefer, and N. Eriksson, et al. 2012. “Reactions to Direct-to-Consumer ‘BRCA’ Test Results.” Posted on 23andMe, 12 February 2013. https://blog.23andme.com/wp-content/uploads/2012/11/ASHG2012poster-Francke.Oct30.pdf.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah. 2001. “Biologization Revisited: Kinship Theory in the Context of the New Biologies.” In Franklin and McKinnon 2001b, 302328.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah. 2013. Biological Relatives: IVF, Stem Cells, and the Future of Kinship. Durham, NC: Duke University Press.

  • Franklin, Sarah. 2019. “The Anthropology of Biology: A Lesson from the New Kinship Studies.” In Bamford 2019, 107132.

  • Franklin, Sarah, and Susan McKinnon. 2001a. “Introduction: Relative Values: Reconfiguring Kinship Studies.” In Franklin and McKinnon 2001b, 128.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah, and Susan McKinnon, eds. 2001b. Relative Values: Reconfiguring Kinship Studies. Durham, NC: Duke University Press.

  • Fujimura, Joan H., and Ramya Rajagopalan. 2011. “Different Differences: The Use of ‘Genetic Ancestry’ versus Race in Biomedical Human Genetic Research.” Social Studies of Science 41 (1): 530. http://doi.org/10.1177/0306312710379170

    • Search Google Scholar
    • Export Citation
  • Fullwiley, Duana. 2007. “Race and Genetics: Attempts to Define the Relationship.” BioSocieties 2 (2): 221237. https://doi.org/10.1017/S1745855207005625

    • Search Google Scholar
    • Export Citation
  • Fullwiley, Duana. 2014. “The ‘Contemporary Synthesis’: When Politically Inclusive Genomic Science Relies on Biological Notions of Race.” ISIS 105 (4): 803814.

    • Search Google Scholar
    • Export Citation
  • Gibbon, Sahra. 2002. “Re-examining Geneticization: Family Trees in Breast Cancer Genetics.” Science as Culture 11 (4): 429457. https://doi.org/10.1080/0950543022000028929

    • Search Google Scholar
    • Export Citation
  • Gibbon, Sahra. 2016. “Translating Population Difference: The Use and Re-use of Genetic Ancestry in Brazilian Cancer Genetics.” Medical Anthropology 35 (1): 5872. https://doi.org/10.1080/01459740.2015.1091818

    • Search Google Scholar
    • Export Citation
  • Goldfarb, Kathryn E. 2019. “Embodied Relationality beyond ‘Nature’ vs ‘Nurture’: Materializing Absent Kinships in Japanese Child Welfare.” In Bamford 2019, 153178.

    • Search Google Scholar
    • Export Citation
  • Goldfarb, Kathryn E., and Caroline E. Schuster. 2016. “Introduction: (De)materializing Kinship—Holding Together Mutuality and Difference.” Social Analysis 60 (2): 112. https://doi.org/10.3167/sa.2016.600201

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    • Export Citation
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  • Jabloner, Anna. 2015. “Humanity Pending: Californian Genomics and the Politics of Biology.” PhD diss., University of Chicago.

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  • Jabloner, Anna. 2022. “American Bioinformation and U.S. Race Politics: The Values of Diverse Genetic Data.” In Bioinformation Worlds and Futures, ed. EJ Gonzalez-Polledo and Silvia Posocco, 111129. London: Routledge.

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  • Jabloner, Anna. n.d. “Gendered Labors and the Future of Race: Bio/graphy after Genomics.” Unpublished manuscript.

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Contributor Notes

Anna Jabloner is a sociocultural anthropologist and Lecturer in the Department of Anthropology at Harvard University. The focus of her ethnographic research has been on the increasing applications of genomic technologies in American medicine and in the US legal system, investigating how these applications shape identities and unequally distributed experiences of risk. She is currently working on a book titled “Future Pending: Genomics, California, and the American Technological Imagination.” Jabloner holds a PhD from the University of Chicago and a MagPhil from the University of Vienna. E-mail: jabloner@fas.harvard.edu

Social Analysis

The International Journal of Anthropology

  • View in gallery

    Sketch of a kinship chart used in genetic counseling instruction

  • Abu El-Haj, Nadia. 2007. “The Genetic Reinscription of Race.” Annual Review of Anthropology 36: 283300. https://www.annualreviews.org/doi/10.1146/annurev.anthro.34.081804.120522.

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  • Abu El-Haj, Nadia. 2012. The Genealogical Science: The Search for Jewish Origins and the Politics of Epistemology. Chicago: University of Chicago Press.

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    • Export Citation
  • Aronowitz, Robert A. 2007. Unnatural History: Breast Cancer and American Society. New York: Cambridge University Press.

  • Bamford, Sandra, ed. 2019. The Cambridge Handbook of Kinship. Cambridge: Cambridge University Press.

  • Bell, Hannah S., Funmi Odumosu, Anna C. Martinez-Hume, Heather A. Howard, and Linda M. Hunt. 2019. “Racialized Risk in Clinical Care: Clinician Vigilance and Patient Responsibility.” Medical Anthropology 38 (3): 224238. https://doi.org/10.1080/01459740.2018.1476508

    • Search Google Scholar
    • Export Citation
  • Benson, Peter. 2012. “Commentary: Biopolitical Injustice and Contemporary Capitalism.” American Ethnologist 39 (3): 488490. https://doi.org/10.1111/j.1548-1425.2012.01376.x

    • Search Google Scholar
    • Export Citation
  • Black, Edwin. 2003. War against the Weak: Eugenics and America's Campaign to Create a Master Race. New York: Four Walls Eight Windows.

  • Bliss, Catherine. 2012. Race Decoded: The Genomic Fight for Social Justice. Stanford, CA: Stanford University Press.

  • Bonham, Vence L., Shawneequa L. Callier, and Charmaine D. Royal. 2016. “Will Precision Medicine Move Us beyond Race?New England Journal of Medicine 374 (21): 20032005. https://doi.org/10.1056/NEJMp1511294

    • Search Google Scholar
    • Export Citation
  • Braun, Lundy, and Evelynn Hammonds. 2012. “The Dilemma of Classification: The Past in the Present.” In Genetics and the Unsettled Past: The Collision of DNA, Race, and History, ed. Keith Wailoo, Alondra Nelson, and Catherine Lee, 6780. New Brunswick, NJ: Rutgers University Press.

    • Search Google Scholar
    • Export Citation
  • BuzzFeed. 2018. “How Not to Talk about Race and Genetics.” Commentary posted on 30 March. https://www.buzzfeednews.com/article/bfopinion/race-genetics-david-reich.

    • Search Google Scholar
    • Export Citation
  • Carsten, Janet. 2001. “Substantivism, Antisubstantivism, and Anti-antisubstantivism.” In Franklin and McKinnon 2001b, 2953.

  • Clarke, Angus, and Katie Thirlaway. 2011. “‘Genomic Counseling’? Genetic Counseling in the Genomic Era.” Genome Medicine 3 (1): 7. https://doi.org/10.1186/gm221.

    • Search Google Scholar
    • Export Citation
  • Comfort, Nathaniel C. 2012. The Science of Human Perfection: How Genes Became the Heart of American Medicine. New Haven, CT: Yale University Press.

    • Search Google Scholar
    • Export Citation
  • di Leonardo, Micaela. 1987. “The Female World of Cards and Holidays: Women, Families, and the Work of Kinship.” Signs: Journal of Women in Culture and Society 12 (3): 440453.

    • Search Google Scholar
    • Export Citation
  • Doucet-Battle, James. 2021. Sweetness in the Blood: Race, Risk, and Type 2 Diabetes. Minneapolis: University of Minnesota Press.

  • Dumit, Joseph. 2012. Drugs for Life: How Pharmaceutical Companies Define Our Health. Durham, NC: Duke University Press.

  • Egorova, Yulia. 2010. “DNA Evidence? The Impact of Genetic Research on Historical Debates.” BioSocieties 5 (3): 348365. https://link.springer.com/article/10.1057/biosoc.2010.18

    • Search Google Scholar
    • Export Citation
  • Epstein, Steven. 2007. Inclusion: The Politics of Difference in Medical Research. Chicago: University of Chicago Press.

  • Featherstone, Katie, Paul Atkinson, Aditya Bharadwaj, and Angus Clarke. 2006. Risky Relations: Family, Kinship and the New Genetics. Oxford: Berg.

    • Search Google Scholar
    • Export Citation
  • Finkler, Kaja. 2001. “The Kin in the Gene: The Medicalization of Family and Kinship in American Society.” Current Anthropology 42 (2): 235263. https://doi.org/10.2307/3596413

    • Search Google Scholar
    • Export Citation
  • Finucane, Brenda. 2012. “2012 National Society of Genetic Counselors Presidential Address: Maintaining Our Professional Identity in an Ever-Expanding Genetics Universe.” Journal of Genetic Counseling 21 (1): 36. https://onlinelibrary.wiley.com/doi/full/10.1007/s10897-011-9466-6

    • Search Google Scholar
    • Export Citation
  • Francke, Uta, C. Dijamco, A. K. Kiefer, and N. Eriksson, et al. 2012. “Reactions to Direct-to-Consumer ‘BRCA’ Test Results.” Posted on 23andMe, 12 February 2013. https://blog.23andme.com/wp-content/uploads/2012/11/ASHG2012poster-Francke.Oct30.pdf.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah. 2001. “Biologization Revisited: Kinship Theory in the Context of the New Biologies.” In Franklin and McKinnon 2001b, 302328.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah. 2013. Biological Relatives: IVF, Stem Cells, and the Future of Kinship. Durham, NC: Duke University Press.

  • Franklin, Sarah. 2019. “The Anthropology of Biology: A Lesson from the New Kinship Studies.” In Bamford 2019, 107132.

  • Franklin, Sarah, and Susan McKinnon. 2001a. “Introduction: Relative Values: Reconfiguring Kinship Studies.” In Franklin and McKinnon 2001b, 128.

    • Search Google Scholar
    • Export Citation
  • Franklin, Sarah, and Susan McKinnon, eds. 2001b. Relative Values: Reconfiguring Kinship Studies. Durham, NC: Duke University Press.

  • Fujimura, Joan H., and Ramya Rajagopalan. 2011. “Different Differences: The Use of ‘Genetic Ancestry’ versus Race in Biomedical Human Genetic Research.” Social Studies of Science 41 (1): 530. http://doi.org/10.1177/0306312710379170

    • Search Google Scholar
    • Export Citation
  • Fullwiley, Duana. 2007. “Race and Genetics: Attempts to Define the Relationship.” BioSocieties 2 (2): 221237. https://doi.org/10.1017/S1745855207005625

    • Search Google Scholar
    • Export Citation
  • Fullwiley, Duana. 2014. “The ‘Contemporary Synthesis’: When Politically Inclusive Genomic Science Relies on Biological Notions of Race.” ISIS 105 (4): 803814.

    • Search Google Scholar
    • Export Citation
  • Gibbon, Sahra. 2002. “Re-examining Geneticization: Family Trees in Breast Cancer Genetics.” Science as Culture 11 (4): 429457. https://doi.org/10.1080/0950543022000028929

    • Search Google Scholar
    • Export Citation
  • Gibbon, Sahra. 2016. “Translating Population Difference: The Use and Re-use of Genetic Ancestry in Brazilian Cancer Genetics.” Medical Anthropology 35 (1): 5872. https://doi.org/10.1080/01459740.2015.1091818

    • Search Google Scholar
    • Export Citation
  • Goldfarb, Kathryn E. 2019. “Embodied Relationality beyond ‘Nature’ vs ‘Nurture’: Materializing Absent Kinships in Japanese Child Welfare.” In Bamford 2019, 153178.

    • Search Google Scholar
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