ARTICLE
Bioethical Matriarchy: Race, Gender, and
the Gift in Genomic Research
James Doucet-Battle
University of California, Santa Cruz
jbattle@ucsc.edu
(Now) the director of the US
National Institutes of Health (NIH), Francis Collins, is trying to make
up for decades of slights. Over the past four months, he has met Lacks
family members to answer questions and to discuss what should be done
with genome data from their matriarch’s cell line.
(Callaway, 2013, p. 132, emphasis added)
Narratives—socializing
stories—that are attached to all women and blacks of both genders have
an inordinate control over the potential for private personhood. The
public controls of race and gender are so robust that private
individuation is rarely an opportunity for those whose identities fall
within these two social constructs.
(Holloway, 2011, p. 7)
Is that
where the manhood lay? In the naming done by a white man who was
supposed to know? Who gave them the privilege not of working but of
deciding how to?
(Morrison, 1998, p. 147, emphasis added)
In a letter to the journal Nature on August 8, 2013, a
research team led by Andrew Adey, Joshua Burton, and Jacob Kitzman from
the Department of Genome Sciences at the University of Washington,
Seattle announced the successful mapping of the genome and epigenome of
the HeLa cell line.1 This development occurred
less than seven months after a German research group directed by Lars
Steinmetz published data in an open access journal detailing the first
successful genomic sequencing of a HeLa cell line.2 These
accomplishments promised to change the way researchers understood
environmental adaptation and energy regulation as metabolic processes
of genetic mutation. This advance could possibly shed new light on the
causative factors and mechanisms underlying the development of Type 2
diabetes and other cardiometabolic disorders.
However, the international research
community, particularly the National Institutes of Health, harbored
concern about what the new discovery might mean for future research.
Although the German team removed the online data, the family of
Henrietta Lacks, who was the original source of the HeLa line, was
especially concerned about the ethical implications of these
discoveries. It seemed the scientific community was once again
producing wealth and knowledge from the HeLa cell line without
acknowledging its fraught history of bodily appropriation. As
chronicled by Hannah Landecker (2000) and Rebecca Skloot (2011), the
HeLa cell line was commodified without the knowledge of Lacks’s family
at a time when informed consent was not yet a legal norm. This time,
however, the Lacks family demanded economic justice.
In a statement released the day before the announcement, Francis
Collins, director of the NIH, sought to reconcile the newly mapped HeLa
line with the Lacks’s demands:
Just like their matriarch,
the Lacks family continues to have a significant impact on medical
progress by providing access to an important scientific tool that
researchers will use to study the cause and effect of many diseases
with the goal of developing treatments. (National Institutes of Health.
2013, August 7, News Release, emphasis added)
On closer reading and for the purpose of this article, the statement
“Just like their matriarch, the Lacks family continues to…provid[e]
access” reveals a vexed engagement with HeLa’s history. Although
Henrietta Lacks’s consent to the use of her cervical cancer cells
beyond the diagnosis and treatment of her condition was not required,
the phrase “providing access” implies that she did. Collins’s statement
frames the family as a biological resource and locates labor value
squarely within researcher expertise, reproducing HeLa’s history of
racialized and gendered forms of labor, kinship denial, and
commodification that are often disavowed. Together, these issues make
the intersections between genomics, race, and gender a fundamentally
bioethical relationship.
Engaging with scientific and media narratives about Henrietta Lacks and
HeLa, this article charts the ways genomic research have facilitated
the re-emergence of a particularly thorny term: matriarchy.
Within the bioethical nexus of genomics, race, and gender, the
invocation of matriarchy in these narratives makes the private
“public,” a process Karla Holloway (2011) argues constitutes a control
of race and gender (p. 7). Hence, they belie racialized gender
constructs based on African descent that are rooted in socioeconomic
history, revealing political and resource allocations erased by the
matriarchal label and which I term bioethical matriarchy.
In this sense, investigating bioethical matriarchy departs from Max
Weber’s (1910) century-long call for an analysis of technology separate
from an analysis of the “property relations” among economic actors
(Weber 2005, p. 27).
I make two arguments: 1) Although race and gender have occupied much
scholarly and media attention, matriarchy, specifically black
matriarchy, as both a racial and gender construct of otherness, has
remained under-analyzed but yet routinely deployed in the social
sciences, politics, and humanities; 2) Underlining patriarchal gift
economies of exchange, bioethical matriarchy (or the bioethical
matriarch) marks racialized and gendered forms of exchange arising from
the absence of consent or of obligational precedents for reciprocation.
Three fundamental questions drive this article’s inquiry: 1) What do
novel matriarchal genomic origin narratives tell us about embedded
racialized and gendered forms of exchange and their historical
intersections with socioeconomic status and inequality?; 2) How are
race, gender, and the social order reproduced or regenerated
as a productive economic construct?; and 3) Can restorative or
reparative justice render the bioethical matriarch whole? Arguably, the
bioethical matriarch is positioned as not whole.
As this essay will show, Henrietta Lacks’s matriarchal status derives
not from any real power Lacks may have had, but from HeLa’s subsequent
notoriety gained recursively as a fragmentary biospecimen.
To examine these questions, I build on previous ethnographic research
conducted on Type 2 diabetes and race in New York and Northern
California, and new ethnographic and archival fieldwork in Baltimore, MD
and Washington D.C. exploring the underlying role of race in both
genomic and global health disparities research.3 I
suggest that deconstructing the matriarch-status ascription addresses
the intersections of genomics, racial labor, and gender beyond their
component social, political, and biological parameters. At stake is
whether the political and economic power enfranchising inherited rights
to resources accrue to the matriarch as a result of this exchange.
The racial bioethics of the gift
Classical anthropology defined gift exchange as a circulation of
property that sets in motion obligations to give, receive, and
reciprocate (Malinowski, 1922; Mauss, 1990). Early functionalist
projects focused on exchange as a social and political lens through
which the value of the gift was seen as secondary to the function it
served in cementing human relationships. However, women and slaves have
each been exchanged historically as both fungible gifts and property
(Du Bois, 1924; Strathern, 1988). W.E.B. Du Bois’s (1924) theorization
of the gift as racial labor preceded Mauss’s notion of the gift as political
(Mauss, 1990). I read Du Bois’s definition of the gift alongside
Catherine Waldby and Robert Mitchell's (2006a) account of 21st century “tissue
economies,” in which cells and tissues are transferred from poor,
socially and economically disadvantaged “surplus” bodies to the wealthy
and powerful in society, a transfer rationalized by narratives of
citizenship and civic duty (Waldby & Mitchell, 2006b, pp. 56-57). And like Du
Bois, Waldby and Mitchell put forward a redistributive and regenerative political
economy for bodies made deficient in their material
appropriation. Participatory inclusion by the poor and
disadvantaged, particularly women, highlights Joan Scott’s (1986)
insistence upon placing gender front and center in any historical
analysis of labor. Additionally, I bring the notion of racialized forms
of gendered labor as fungible, or exchangeable property, to bear on
Richard Hyland’s (2014) assertion that gift-giving and exchange occur
in sociocultural spaces outside and in spite of legal or moral
sanction, where according to Karla Holloway (2014), “the evolution of
legal text did not… fully and /or finally determine social act” (p. x).
Outside of critical race and feminist studies and the medical
humanities, few scholars have engaged the ways notions of matriarchy
both inform conditions of exchange and misrecognize affective kinship
structures.4 HeLa
and its embeddedness in slavery’s historical rupturing of personhood
generally and motherhood specifically, troubles neat scholarly notions
of gift exchange, reciprocation, and consent, by introducing a body
that has historically constituted a “point of convergence where
biological, sexual, social, cultural, linguistic, ritualistic, and
psychological fortunes join” (Spillers, 1987, p. 67). Racial and gender
constructs overdetermine notions of individual sovereignty and
subjectivity for women and blacks, whose bodies always have “a
compromised relationship to privacy (Holloway, 2011, p. 9).
Genomic science offers new opportunities to make private bodies public,
often under the neoliberal banner of individual sovereignty. Sometimes
this sovereignty is defined in terms of an “inclusion-and-difference”
paradigm, which is driven by older epistèmes circumscribing group
difference in terms of biologically ascertainable “races” (Epstein,
2007, pp. 6-7). However, “race” is still often rendered a
genotypically-fixed feature of the body (or a stable category, in
equilibrium) that is scientifically discoverable, rather than an
elusive or illusive target. This presents an intractable form of social
and scientific classification that Alondra Nelson (2008) suggests has
created new forms of social meaning around identity. Genetic tests as a
commodity offer new tools for “self-fashioning” based on notions of
scientific impartiality and fulfilling one’s “genealogical
aspirations.” While Nelson cautions against prematurely assessing the
social and political ramifications of newly marketed genetic “ancestry”
testing models, she submits that the knowledge claims they make, as
well as their subsequent interpretation by consumers, set in motion new
forms of subjectification based on biological notions of racial
difference (Bolnick et al., 2007; Nelson, 2008).
The personal fulfillment of diasporic genealogical aspirations and the
political imperatives of research inclusion underline a desire to make
legible ancestries violently ruptured by slavery and colonialism and
bodies marked anonymous historically. In particular, black
feminist writers, specifically fiction writers, make visible these
otherwise violent and anonymous historical silences and ellipses of
memory. In Toni Morrison’s Beloved
(1988), the novel’s protagonist, Sethe, attempts unsuccessfully to
repress traumatic memories of slavery, bondage, and loss, which
involved murdering her own two-year-old daughter to prevent her
recapture by slave patrols pursuing runaway slaves in the north.
Saidiya Hartman (2007) writes about the tension between slavery,
memory, and the archive, and how each produces both contingent silences
and a sense of irrevocable ancestral loss, asking, “Was my hunger for
the past so great that I was now encountering ghosts? Had my need for
an entrance into history played tricks on me, mocked my scholarly
diligence, and exposed me as a girl blinded by mother loss?” (p. 16). In writing about the violent erasure of genealogical
memory, Hartman blurs fiction with historical analysis—what elsewhere
she calls “critical fabulation” (2008)—to excavate an unknowable
maternal past. The erasures of memory and history instituted by racial
slavery continued to haunt the life of Henrietta Lacks and the immortal
life of HeLa, both situated in “a common historical ground, the
socio-political order of the New World” in which, according to Hortense
Spillers (1987), a “diasporic plight marked a theft of the body” (p.
67). The Lacks matriarchal narrative represents the private theft of
the mortal black body that can be “killed” (Roberts, 2014), while HeLa
represents an “immortal” public text read from genetic analyses of the
cells, their genome, and their epigenome, all decoded from, to
paraphrase Spillers, “an undecipherable kind of hieroglyphics of Black
flesh” (Spillers, 2014, p. 67).
Deconstructing matriarchy
The Oxford English Dictionary
defines a matriarch as “a woman who is the head of a family or tribe,”
and “an older woman who is powerful within a family or organization.”
Further, Oxford defines matriarchy as “a system of society or government ruled by a woman or women.”5 Discursively
figuring Henrietta Lacks as "matriarch" positions her as a notable
figure in her family, but this positioning elides her actual power in
both her personal, family life (which we may not have access to) and
larger cultural, historical, and social contexts reproducing dominant
notions of race and gender.
Discursive framings of matriarchy in social and political scientific
literatures have long labeled African-American and, by extension,
Afro-Creole family structures as “matriarchal,” “matrilineal,” or
“matrifocal” (Beckles, 1999; Clarke, 1999; Frazier, 1940; Hyman &
Reed, 1969; Moynihan, 1965; Smith, 1956, 1988, 1996).6 Moreover,
invocations of matriarchy have usually contained political motivations
(Matory, 2005; Sanday, 1998). For example, the 1965 Moynihan Report
attributed “matriarchal” family structures to “the culture of poverty”
affecting a large percentage of the African-American population. Low
rates of marriage, skewed representations in popular culture, and
statistics on out-of-wedlock births, reinforced the notion of endemic
African-American cultural pathology and family disintegration. And this
biosocial “fact” of African-American matriarchy has seeped into genomic
discourse.
According to Lisa Weasel (2004), the story of Henrietta Lacks reignited
evolutionary debates about human origins (see Landecker, 2000), while
reinscribing a narrative “from which race and gender cannot be
extricated” (Weasel, 2004, p. 189). Race, a theoretical and
methodological pre-occupation of nineteenth- and
early-twentieth-century biological anthropology that sought to find its
essence, later gave way to cultural and postmodern arguments
emphasizing its socially constructed nature, only to reappear with
vigor as a biological entity in the early twenty-first century (Bliss,
2012). Thus, in terms of racial history as a constructed lens through
which to view the past, particularly the gendered past, genomic science
offered new truth claims about the prehistory of race (Wailoo, Nelson,
& Lee, 2012).
HeLa exemplifies and Henrietta Lacks personifies the regenerative
persistence of this sub-Saharan-African genetic possibility and
ability, carrying with it the narrative baggage of the racialized black
matriarch. Further illustrating the historical conflation of ancestry
with gender, and race with genetics, researchers at the University of
California, Berkeley in 1987 argued for an original mitochondrial
ancestor of all humanity. The scientific narrative of the sub-Saharan,
Out-of-Africa origins of humanity soon found itself in tension with
Judeo-Christian origin narratives based on religious myth. Subsequently
interpreted through a gendered Western religious lens, this
mitochondrial ancestor, or “genetic matriarch,” was envisioned as Eve
from the Biblical Garden and was sometimes referred to as
“Mitochondrial Eve,” who in turn became known as “African Eve”
(Oikkonen, 2015, p. 748). Some saw this development as a compromise
between science and religion. Others saw it as a simplistic
racialization of an extremely complex story of human variation.
Analyses of race and gender, imbricated within evolutionary theory, had
moved from the “bare bones” of the fossil (Fausto-Sterling, 2005) to
gendered explanations of sub-Saharan-African genetic ancestry
(Oikkonen, 2015).
In the above cases, scholarship about human genetic ancestry proved
permeable to perennial constructions of race and gender. Empirical
sample data, first attributed descriptively through observation, were subsequently ascripted
interpretively using categories demarcating inherited social statuses
(matriarchal, religious, racial, gender, etc.) and therefrom imbued
with explanatory characteristics of hierarchal social value. As social
facts, such ascripted statuses are then read scientifically as
inherited, not achieved. Ascription or ascripted status refers to a
social standing inherited from birth. By contrast, achieved status
refers to a merit-based social standing accomplished during one’s
lifetime. I base my understanding on earlier anthropological work on
ascripted status and the sociology of ascriptive inequality to offer a
broader analytic that moves beyond attribution as description to
ascription as explanation (Davis, 1950; Linton, 1936; Parsons, 1970;
Reskin, 2005; Reskin & Branch-McBrier, 2000).
In scientific circles, the use of the term “matriarch” to describe
Henrietta Lacks runs counter to anthropological definitions of
matriarchy as an intergenerational female right to political and
economic power. Matriarchal societies pass on status and wealth to
children through the maternal line and, more importantly, women in
these societies figure prominently in the total political and economic
structure of the group. Matriarchal societies trace not only temporal
but cosmological descent from a female ancestor/progenitor/goddess,
sacralizing social practices that legitimates the social order between
and among the sexes. Seen this way, matriarchy does not imply the
political or economic power to subjugate others but the power to
conjugate and regenerate the totality of social life (Sanday, 1998). In
contrast, matrifocal (or matricentric) groups are female-headed
households characterized in Creole societies by racialized forms of
male exclusion from the larger socioeconomic sphere (Smith, 1996).
Children in matrilineal groups inherit positive status and, often,
rights to resources reckoned through the maternal line. Unlike the
integral social role matriarchy serves, matrifocality exists within the
interstices and at the margins of larger socioeconomic forces. Children
in these families inherit neither positive status nor resources (or
rights to them) from their mothers.
Other scholars have critiqued matriarchal discourses as self-indulgent
practices in status elevation removed from their racialized context.
For these scholars, matriarchy as a concept explains precious little
while gratuitously describing a non-existent kinship structure.
Matriarchy, as expounded upon by nineteenth-century scholars such as
Edward Tylor and twentieth-century scholars such as W.H.R. Rivers,
found little support from empirical studies, which thus stated that
matriarchy no longer existed. If it ever did, it did so within
overarching patriarchal kinship structures either through patrilineal
marriage or matrilineal brother/uncle rubrics (Sanday, 1998).
Matriarchy assumes inherited female rights to resources and influence
in political decision making. Hence, in the Lacks case, the
characterization of “matriarch” is curious, given that it finds little
to no definitional or objective traction. Worse still, it crowds out
conversations about matrifocality as an intergenerational process of
gendered dispossession marking racialized forms of male exclusion from
the wider socioeconomic field (Brereton, 2002). Yet, it is not enough
to simply dismiss Lacks’s ascribed status of “matriarch” as a matter of
poor word choice, however unintentional. Rather, because it circulates
within wider scientific narratives on African origins and genetic
“Eve”s, the usage of “matriarch” exemplifies larger problems around
locating research wealth and engaging with the material-discursive
makings of race and gender.
Finding Africa in the admixed matriarch
Building on contacts made and interviews conducted during Summer 2011,
I attended in Spring 2012 the Genetics of the Peoples of Africa and the
Transatlantic African Diaspora Conference, held at the University of
North Carolina, Chapel Hill. An international meeting, the conference
brought together biological anthropologists, geneticists, molecular
biologists, and epidemiologists of color whose work addressed the
genetics of health and health disparities in transnational and diasporic
African-descent populations. The meeting raised three important and
contentious issues: one epistemic, one definitional, and one
methodological. The first issue centered on personal identification
within a “racial” or “ethnic” group. The second revolved around the
definition of an “African.” The third centered on locating “Africa” in
the “admixed” human genome.
Scientific discourses about Henrietta Lacks and HeLa cells have long
reflected these epistemic, definitional, and methodological issues.
When Walter Nelson-Rees received six cell samples from the Soviet Union
in 1973, he believed them to have originated in female donors. The
cells were all revealed to possess only X-shaped chromosomes, meaning
they had the genetic markers for maternal origin and descent. Upon
closer examination by Ward Peters in Detroit, all six “Soviet” samples
were determined to have originated from a sub-Saharan-African female—to
be specific, an “admixed African American” female, Henrietta Lacks.
The publication of the HeLa genome and epigenome in August 2013 was
preceded and accompanied by debates about health disparities, genomic
explanations for differential disease outcomes among racial groups, and
the politics of racial classification and their intersections with
power, purity, admixture, and ethnoracial self-identification. However,
the dual lives of Henrietta Lacks and the immortal HeLa cell line
trouble these health disparity debates, biological discourses on purity
and admixture, and attendant claims to locate and source
sub-Saharan-African genetic diversity in the human genome, figuring
what Spillers calls the “undecipherability of black flesh” even in the
face of these widespread, organizational attempts to decode it.
The epistemic question was raised by African-American molecular biologist Dr. Marcus Scribner7, who
participated in the Chapel Hill meeting I attended. Visibly perturbed
by the ways race had been linked to specific genomic scripts in an
earlier presentation, Scribner said, “Ancestry tests for ancestors, not
living people. It is an act of categorical misrecognition to attempt to
explain genetic and genomic differences within human populations using
the language of race.” Against efforts to define “an African” as a
member of a sub-Saharan group on the continent, Scribner argued, “An
African is someone who either originates from or lives within the
African continent. It makes no difference whether what we call
‘European’ Y-chromosomes are found in North Africa, the US, and [sic]
South Africa; or ‘Arab’ Y-chromosomes in the Sudan.”
Scribner traced the assumptions behind such claims to
nineteenth-century biological anthropology and evolutionary theory,
which equated an exaggerated Bantu phenotype as the prototypical
“Negro”:
This
was about Europe and America writing an evolutionary narrative to
themselves about themselves and those below them as a result of
contact, colonization and slavery. Knowledge produced for domestic
consumption and the exercise of power, but wholly inaccurate.
However, the historical dynamics of power challenge genomic narratives
about race. One researcher who traces genomic ancestry in Latin America
said,
The
population of the Dominican Republic has a heavy African component. In
a continuum of Africanicity, from lowest to highest you have: Mexico,
Ecuador, Colombia, Puerto Rico, and the Dominican Republic. Yet
national and cultural narratives in the Dominican Republic focus on
their “European heritage.” Haitians are seen as the Africans although
there are Dominicans with as much or more African genetic ancestry than
Haitians.
Since the 1960s, several anthropologists and Afrocentric scholars have
used the terms “Africoid” and “Africanity” to describe an essential
sub-Saharan-African aesthetic (Maquet, 1972; Senghor, 1967). Over time,
these two terms have been adopted by scholars in biological
anthropology, diaspora studies, psychology, cultural studies, and
increasingly, in the field of genetics. For example, “Africanicity” was
deployed originally in studies of African art and film but is now taken
up in genomics to describe degrees of Africanicity in a genetic sample
(Lima et al., 2007). What is unclear is precisely how and when
the aesthetic became seen as biological, with some researchers using
Africanicity to define a common “African American cultural DNA”
(McDougall, 2011, emphasis added),8 but
the epistemic and definitional interpretations of African ancestry in
the latter deterritorialize sub-Saharan Africa geographically while
simultaneously inferring its genetic locatability.
The central question, therefore, remains: How to source the wide
genetic diversity of sub-Saharan Africanicity in admixed
African-descent populations? As one molecular epidemiologist told me,
It
is extremely difficult to source (African) origins in an admixed
population. And of course, there can be degrees of admixture even
within the same population. The Southeastern United States has the
least racially admixed and the Pacific Northwest the most racially
admixed African American populations in the US. Testing Afro-Caribbean
and Afro-Brazilian populations can perhaps tell us more about African
ancestry than United States African Americans—too much admixture.
In agreement, another researcher offered a possible solution:
The
high percentage of European Y-chromosomes in the African American
population makes mitochondrial (mt)DNA a better locus of study. It is a
circular genome that is maternally derived. It performs no
recombination, is traceable and more copies of it are available for
study.
Mitochondrial DNA (mtDNA) is derived only
through maternal lines, and the genetic information it contains
regulates energy production by utilizing oxygen to convert food to
energy. This energy regulation mechanism represents human adaptation to
a diverse set of environmental and historical challenges. African
Americans have some of the highest rates of Type 2 diabetes in the US.
However, their mtDNA contains diverse sets of sub-Saharan DNA. The
genetic complexity of Type 2 diabetes includes co-factors that usually
accompany the disease, including hypertension; hypercholesterolemia;
eye, kidney, and heart diseases; chronically high blood sugar levels;
and Alzheimer’s disease. Diabetics rarely die from diabetes itself but
rather from one or more of these cardiometabolic factors. Recently, the
genomic research focus on this Type 2 genetic complexity, known as the
Metabolic Syndrome (MetS), has been centered on examining mtDNA and its
energy and metabolic system.
Epidemiological studies of metabolic diseases in African Americans must
reckon with the ways slavery has structured mtDNA inheritance in
African American populations. These epidemiological lines lead us to
African-American women as embodiments of a particular history. While
locating Africanicity presents unique challenges, operationalizing
admixture analyses in the US offers robust research opportunities,
highlighting two important historical factors favoring African-American
participation in genomic research. First, the United States was the
only slave society that experienced an increase in its African descent
population. Caribbean slave economies like Jamaica, for example,
preferred working slaves to death and replacing them with new imports
from Africa (Brown, 2010). Second, by 1830, four years before the end
of slavery in the British West Indies, enslaved Africans in the US on
average had three maternal ancestral generations preceding them, each
generation born in the US. From an epigenomic standpoint, African
Americans, representing both a large sample pool and a diverse
population in terms of admixture, demonstrate a longer history of
environmental and epidemiological interaction with European
populations. In terms of Africanicity, this variously admixed
population demonstrates a predictable pattern of mtDNA flow through
West African maternal lines.
Embodying the diversity of sub-Saharan mtDNA in a racially admixed
family, the body of Henrietta Lacks revolutionized cellular biology and
spurred global biomedical research. The sequencing of the HeLa genome
and epigenome in 2013 promised, or threatened, to change the way we
understood metabolic adaptation to environmental change. It raised
ethical questions about who should profit from that understanding.
Race, gender, and ascripted, or inherited, matriarchal social status,
intertwined within regimes of property ownership, and drew a bioethical
line between novel forms of exchange and historical regimes of
appropriation. Moreover, it accented the line between the racial gift
as social exchange and the gendered commodity as market exchange.
Matriarchal wealth and racialized participation
It is not difficult to source the missing intergenerational wealth
implied in the matriarchal designation given to Henrietta Lacks. The
HeLa cell line has founded a global industry that has generated six
decades worth of professional and scientific capital. A search on the
PubMed Central database turns up over 70,000 research papers written
over the last sixty years about HeLa and its central role in developing
effective vaccines for both poliomyelitis and the human papilloma
viruses. Yet, somehow achieving a just calculus of balanced reciprocity
between the Lacks family, the scientific community, and the wider
society benefiting from HeLa research remained an unformulated equation.
The publishing of the HeLa genome and epigenome prompted media
speculation about negotiations between the NIH and the Lacks family
concerning the possible payment of royalties to the family. As reported
in Nature, this presented a dilemma for Francis Collins:
Some
Lacks family members raised the possibility of financial compensation,
Collins says. Directly paying the family was not on the table, but he
and his advisers tried to think of other ways the family could benefit,
such as patenting a genetic test for cancer based on HeLa-cell
mutations. But they couldn’t think of any. (Callaway, 2013, p. 133)
Although financial compensation was not ultimately granted, two members
of the Lacks family were subsequently included on the ethics board
charged with formulating the appropriate conditions for obtaining HeLa
genome samples for research. Board inclusion was framed as an equitable
step toward medical justice, despite the family’s deepening
intergenerational poverty, relative scientific illiteracy, and sparse
social capital—and all of this in fact risked furthering the
exploitation that inclusion sought to redress. Johns Hopkins
University, moreover, created two scholarship programs in the name of
Henrietta Lacks and promised that 40% of new hires at the university
would come from inner city Baltimore. For the Lacks family, monetary
recompense is for the most part generated through speaking appearances
and private donations made by those particularly touched by the story
of Henrietta Lacks and HeLa.9
Henrietta Lacks’s birth in the former slave quarters of a Virginia
tobacco plantation highlighted the sociogenesis of a racialized social
hierarchy that would later relegate her to the colored ward of a
hospital in which she sought treatment for cervical cancer, and from
which her now immortal cells were harvested. Over sixty years later,
her cells continue to replicate in laboratories around the world,
persisting alongside questions of ethics, consent, and social justice.
And having “contaminated” upwards of 20% of the cell lines used in
research globally, she continues to cross biological boundaries
expounded by the social order that characterized the world in which she
lived and died.
The history of Henrietta Lacks’s life and HeLa’s immortal behavior
transgresses the rational boundaries of society and science, labor and
expertise, and their constructed social mechanisms of racial inclusion
and exclusion. For one African-American geneticist, Dr. Richard
Ralston, research inclusion constitutes a vital component of producing
both knowledge and justice through “participation” by minorities, both
as research subjects and researchers. He asks, “If we don’t care enough
about what is happening in our own families and communities, then who
will?” Ralston is one of a cohort of geneticists and molecular
epidemiologists of color trained at historically black colleges and
universities. Aware of the history of the Tuskegee syphilis study, he
believes that custodianship of African-descent DNA is a matter of
social justice and ethical responsibility. However, at the meeting in
Chapel Hill, he saw attempts to collect this DNA as driven more by
economic and scientific motives than by a desire to reduce
health
disparities, noting, “I know a lot of people working in genomics. Trust
me, most of them don’t give a damn about black people. But they can’t
ignore the amounts of money coming into genomic research.” Ralston’s
belief in the importance of African-descent sampling exists in
historical tension with dual suspicions about the interests of the
market and the curiosity of science.
The Lacks case reflects these suspicious histories and constitutes
neither accident, nor coincidence, nor even malign intent, but rather
the genomic fulfillment of long-standing social, economic, and
structural processes. It reveals impoverishment structures existing
within larger patriarchal wealth accumulation networks and offers an
optics for examining kinship and making legible the sociocultural
construction of both racial research categories and health disparities.
I submit that these biosocial forms of wealth accumulation and status
regulation are not acquired through merit but are ascripted by birth
within hierarchal gift relations reflecting gendered and raced
disparities in both social capital and social justice. Such disparities
render elusive ethical notions of informed consent and research equity.
Discussion
In this article, I explored the rise, fall, and genomic resurrection of
matriarchy. This genomic moment, when the political economy of race and
matriarchy took on new salience in authoring new participatory regimes
of wealth accumulation, relied on older, gendered forms of social
engagement and obligations to give and receive that legitimated
appropriation in the absence of informed consent. The racial body as a
diverse, regenerative product of power and history marks mercantile
colonial, capitalist industrial, and contemporary biocapital epochs.
Authorial power and historical narratives recirculating matriarchal
discourses insinuate an elevated kinship status neither ascripted by
birth nor achieved through merit, and in so doing reproduce the social
order.
From a social justice standpoint, the failure to reciprocate to the
donor defines Mauss’s notion of sacrificial exchange (Mauss, 1990, p.
82). The challenge of modernity, Mauss argues, is to transform the
economy of human relationships from one based on sacrificial exchange
to one based on balanced reciprocity (1990, pp. 82-83). In the case of
the HeLa cell line, its perpetual self-laboring, recent genomic and
epigenomic sequencing, and discursive accession to matriarchal status
and wealth are as ascripted economically as they are
intergenerationally. Difficulties persist in determining whether and
how the Lacks family might benefit from the commodification of HeLa in
scientific knowledge production.
Weber (1910) earlier advocated understanding technology as separate
from materialist history and analyses of property relations. In the
case of genomic technology, this article suggests otherwise. In
regenerating and thereby naturalizing the social order as a social
fact, the historical violence of racialized reproduction carries
greater socioeconomic value than kinship, which, when emptied of
meaningful social content, “can be invaded at any given and arbitrary
moment by the property relations” (Spillers, 1987, p. 74). African
Americans have been historically commodified as legal property,
objectified economically as alienated racial labor, and mined
biologically as a natural resource. Property, labor, and resources as
gift objects, serve as “marker(s) in the economy of human
relationships,” highlighting specific sociohistorical bonds in which
the failure to reciprocate, as with the example of the NIH’s treatment
of the Lacks family, precedes any legal enforcement or moral or ethical
sanction (Hyland, 2014, p. 50).
The matriarchal label attached to Henrietta Lacks forecloses a clearer
understanding of an “irredeemable past” in which the “present was the
future that had been created by men and women in chains, by human
commodities, by chattel persons” (Hartman, 2007, p. 233). Sethe, in
Toni Morrison’s Beloved,
struggles against such a social order, one built on racialized and
commodified reproduction that legitimates acts of bio-appropriation
based neither on consent nor reciprocity. However, such culturally
legitimated acts, based not on the “protected relationships” assumed by
Mauss, insist on the right to obligate the giver to gift through
participation in asymmetrical forms of exchange (Hyland, 2014, p.52).
To paraphrase Sanday (1998), Sethe refuses to conjugate merely to
perpetuate and consequentially subjugate her descendants to biological
lives or existences conditioned upon reproducing intergenerational
obligations to exchange sacrificially as a gift of their racialized
labor to the nation. Seen through this prism, I suggest the
impossibility of achieving matrifocal justice or assuming matriarchal
power to effect the ethical reformation of racialized social practices.
I build on the work of Joan Scott (1986) in positing that kinship alone
does not reproduce gender, but that both gender and race are
constituted in large part separately from kinship by political and
economic forces operating in the wider society (p. 1068).
Conclusion
In this article, I focus on matriarchy, specifically black matriarchy,
as a vital yet unexamined contextual analytic in the social and
political sciences. I presented a case of how the economically
(re)productive, commodified, and laboring black female slave re-emerged
as an economically (re)producing, commodifiable, laboring,
status-elevated black matriarch. Neither an accident of racial, gender
or sexual history, nor a coincidence of physiological pathology and
reproductive regeneration (or for that matter an
exemplar of social deviance), she eventually crossed the segregated
lines of kinship, desire, and race to redefine exchange, integration,
and contamination in both society and biology.
This article has attempted to show how the political economy of
matriarchy as deployed in media and scientific narratives around HeLa
link to older histories of racial and gendered practices of exchange
and appropriation. “She,” whether the primordialized “Mitochondrial
Eve,” racialized “African Eve,” or the “admixed” Henrietta Lacks,
demonstrates how “she” was rendered fecund and exploitable in
scientific knowledge production. Consequently, as an ascripted
matriarch having no real ability to effect change in the social order,
her descendants live in relative poverty. She and most black
“matriarchs” in the US struggle against a downward intergenerational
spiral of health and economic disparities, kinship instability, and
their disparate intersections with social, economic, and medical
justice.
The concept of bioethical matriarchy highlights the ethical importance
of examining discourses that valorize sacrificial exchange and the
elevated status claims ascripted to the obligated. I suggest paying
future attention to how and why discourses of race and gender continue
to operate productively within a social system of organized scientific
and economic practices involved in the perennial deciphering of black
flesh. In this social system of organized technoscientific practices, a
political economy of racialized participation mobilizes both
researchers and targeted risk populations in extra-legal cultural
spaces. However, this widening of attention from the fragmentary
biospecimen to the whole person now leaves us several very important
questions to consider: As a politics of reparation, should a framework
for redress prescribe reparative or restorative justice? In other
words, can restorative justice make the bioethical matriarch “whole” in a legal sense? Or, can reparative justice render the bioethical matriarch “whole” in an economic
sense? And what is more “just”? To “repair” or “restore?” These
abstract yet vital questions expose the very real sociocultural
dynamics of sacrificial exchange and the failure, inability, or sheer
unwillingness to reciprocate.
Examining efforts toward achieving social justice via programmatic
mechanisms of inclusion and consent requires making robust analytical
distinctions between the sacrificial inequality of participation and
the bioethics of appropriation, along the axes of power they inhabit.
The future will determine whether the true bioethical value of the gift
can facilitate balanced reciprocity commensurate to the imagined
biovalue of race and gender.
Acknowledgements
I want to thank my colleagues in the Race, Genomics, and Media Working
Group and the Science and Justice Center at the University of
California, Santa Cruz for our productive discussions. I also extend my
appreciation to Sandra Harvey, Fatimah Jackson, and Marcia Ochoa, who
each contributed uniquely to the direction this project took, and to
the reviewers for their insightful and provocative comments at each
stage of writing.
Notes
1 See Adey et al., (2013).
2 See Landry et al., (2013).
3 This
article is informed by archival research at the Tozzer Library at
Harvard University and the George Gey Collection in the Alan Mason
Chesney Archives at Johns Hopkins University. In addition, I carried
out over 100 hours of observation at health disparities conferences and
meetings, in California, Texas, Washington, DC, and North Carolina.
4 See Hoad (2005)
and Comaroff (2007). Comaroff locates (through Hoad, 2005) the
rationality in Mbeki’s irrational refusal to accept definitions of
HIV/AIDS that characterize it as a sexually transmitted disease,
arguing that these definitions perpetuate Western racist stereotypes
and the Euro-American propensity to use African bodies for
experimentation and profit (Hoad, 2005, p.104). For Mbeki, AIDS
marks the impact of the living legacies of imperialism on African
immune systems. From this perspective, remedies lie less in costly or
hazardous drugs, which prolong neocolonial dependency, than in the
reversal of inequality (Comaroff, 2007, p. 214). Comaroff avers that
the HIV/AIDS epidemic in (South) Africa, like the natural disaster
Hurricane Katrina, dialectally exposes history, power, and capital. For
an important exception, see Hyman & Reed (1969).
5 See http://www.oxforddictionaries.com/us/definition/american_english/matriarch and
http://www.oxforddictionaries.com/us/definition/american_english/matriarchy.
6 One notable
misapplication of the matriarchal meme was reflected by the misreading
of Edith Clarke's My Mother Who Fathered Me (1957), which was
interpreted as a case in point of Caribbean social pathos. Intended as
an ethnographic examination of the social vitality of Jamaican kinship
practices within the context of the island’s independence, Clarke
wished to emphasize the social relationships generated by the kinship
structure, not to critique the structure itself. R. T. Smith (1988)
argues that much of the scholarly misrecognition concerning West Indian
kinship is due to a lack of understanding of the epistemes of the
people themselves. Empirical methodologies misread how meaning is
constructed within kinship groups by placing undue emphasis on class,
politics, or cultural essentialisms (Smith, 1988, p. 28).
7 I use pseudonyms for all the narrators in this article.
8 See de B’béri
(2007). Although sympathetic to Herskovits’s (1990) earlier attempt to
refute Hegel by demonstrating a persistent and significant African
socio-historical presence, I caution against equating cultural
persistence with racial biology. The theoretical application of
Hegelian dialectics to understanding former slave societies begins with
DuBois (1994) and radiates through Fanon (1963). DuBois’s “double
consciousness” (1994, p. 2) is, in Fanon’s work, a “Manichaeism”
dissonantly experienced subjectively and objectively. Marxist
dialectics do not analyze slavery, gender, or the colonial encounter;
race, power, violence, and the ideology of difference trouble the
relative social and racial homogeneity assumed within Marxist
imaginaries (Fanon, 1963, pp. 40-46).
9 As of late 2016, members of the Lacks family had spoken at over 120 schools over the previous five years.
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Bio
James Doucet-Battle is an
Assistant Professor in the Department of Sociology at the University of
California, Santa Cruz. His research interests lie at the intersection
of diaspora and transnational studies, science, technology and society
studies, development studies, and health disparities.