This article by Dr.Paul Brodwin PhD
Professor of Anthropology at the University of Wisconsin-Milwaukee was sent to
me by a friend in Jan. 2006, and at the time was on Google. I was involved in
some of these interviews conducted by Dr. Brodwin during 4th Union, 2002 Kingsport, Tennessee. This article brings
back memories for those involved and regarding DNA its still true today, there is no “Portuguese Haplogroup.”
THE REINVENTION OF MELUNGEON ETHNICITY
(Dr Paul Brodwin)
(Dr Paul Brodwin)
The conflict between the agendas of
scientific genetics and popular movements for recognition and sovereignty does
not always implicate chiefly differences in power. Geneticists, of course, do
not always end up as the enemies of people providing DNA. In the case described
below, members of a small, once-isolated group requested DNA analysis to
validate their claims of collective ancestry. They were happy to find a
geneticist willing to take on their project, but he eventually had serious
misgivings about the entire enterprise. People asked him to provide evidence
about cultural identity and descent, but he knows his science is irrelevant to
their most pressing questions.
The rest of this article examines the use of DNA evidence to assert identity claims among the Melungeons, a multiracial group from southern Appalachia. Their demand for and reception of genetic studies have generated several conflicts, but not along the familiar fault-lines. This case featured few political disagreements about whether research should proceed.
The rest of this article examines the use of DNA evidence to assert identity claims among the Melungeons, a multiracial group from southern Appalachia. Their demand for and reception of genetic studies have generated several conflicts, but not along the familiar fault-lines. This case featured few political disagreements about whether research should proceed.
Obtaining cheek swabs and hair roots,
extracting the DNA, and growing cell lines did not provoke a popular outcry
about imperialism or formal ethical self-scrutiny. Melungeons’’ demand for
collective recognition proved incommensurable not with the politics of genetic
research, but instead with the limits that researchers themselves place on the
interpretation of their findings. This case turned on the conceptual
vulnerability of human population genetics: the mismatch between scientific and
popular views about the ability of genetics evidence to establish collective
origins and identity. A formal protocol such as the MEP, meant to adjudicate
between acceptable and unacceptable research practices, cannot particularly
help geneticists who face a conflict not with potential DNA donors, but instead
with their own professional and intellectual commitments.
The geneticist who worked
with the Melungeons was thus pushed into an even murkier ethical terrain than
the HGDP defenders. He found it impossible to resolve the relevant conflicts
without abandoning his fundamental dedication to his scientific craft. For over
100 years, journalists, social scientists, and folklorists have written about
the Melungeons of northeastern Tennessee and neighboring regions of Virginia
and Kentucky. In a journalistic idiom, the Melungeons are a "lost
tribe," "Virginia’s mystery race," an "almost exinct,"
or "dwindling hill clan," to cite titles of popular magazine articles
over the years. However, attempts at a more accurate description quickly get
caught up in the same identity politics that divide the group itself and that
drive its current interest in genetic research. Until recently, most academic
accounts classified Melungeons as an enclaved community of mixed black, white,
and American Indian ancestry, one of several such groups living in the eastern
and southern United States.
The anthropologist Gilbert (1946) included Melungeons in his detailed list of ""mixed-blood racial islands""——groups that are considered racially distinct by their white, black, and Native American neighbors——along with the Brass Ankles and Croatans of the Carolinas, the Red Bones of Louisiana, the Guineas of West Virginia and Maryland, and the Jackson Whites of New Jersey.6 Gilbert characterized all these groups as backward minorities, suffering from illiteracy and poverty, difficult to classify racially, and needing assimilation to improve their condition.
Other social scientists forgo the paternalism, but offer similar accounts of Melungeon origins. Price (1951) traces the Melungeons to a fluid mixed-race society living in the 18th century in Virgina and the Carolinas. For Beale (1957), they are a ""tri-racial isolate,"" one of 27 such groups found throughout the South. Such groups contain "intermingled Indian, white, and Negro ancestry," and they persist as singular, bounded communities because of their geographical isolation and the legal or customary restrictions on marriage with both whites and blacks (see also Berry 1963). Most recently, DeMarce (1992, 1993)——a professional historian and genealogist——has documented Indian––white, black––white, and black––Indian amalgamations among the historic source populations of Melungeons. She also traces the likely migration of major Melungeon families from west central Virginia into the core area of northeast Tennessee where most people who now call themselves Melungeon trace their lineage.
P1: KVN
[sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 BIOETHICS IN ACTION 161] Until the early 1990s, these scholarly representations remained unchallenged by Melungeons themselves, simply because few people actually admitted to being one. Berry’s informants told him only that he would find Melungeons "across the creek" or “in the next hollow" (Berry 1963: 17). Price learned how to identify typical Melungeon surnames and physical traits from individuals who specifically disclaimed the identity. Beale noted that in the 1950 Tennessee census, Individuals locally known as Melungeon were most often marked by census workers as white, less often as Negro, and occasionally as Indian. He emphasizes that the designation of tri-racial comes from the outside investigator, not the groups themselves. In fact, "the mixed-blood individual will usually insist——with vehemence, if necessary——that there is no Negro ancestry in his family . . . but that he is partly Indian"(Beale 1957: 188). Cavender (1981) found the same situation during fieldwork
in Hancock County, Tennessee, in 1979 and 1980.
The anthropologist Gilbert (1946) included Melungeons in his detailed list of ""mixed-blood racial islands""——groups that are considered racially distinct by their white, black, and Native American neighbors——along with the Brass Ankles and Croatans of the Carolinas, the Red Bones of Louisiana, the Guineas of West Virginia and Maryland, and the Jackson Whites of New Jersey.6 Gilbert characterized all these groups as backward minorities, suffering from illiteracy and poverty, difficult to classify racially, and needing assimilation to improve their condition.
Other social scientists forgo the paternalism, but offer similar accounts of Melungeon origins. Price (1951) traces the Melungeons to a fluid mixed-race society living in the 18th century in Virgina and the Carolinas. For Beale (1957), they are a ""tri-racial isolate,"" one of 27 such groups found throughout the South. Such groups contain "intermingled Indian, white, and Negro ancestry," and they persist as singular, bounded communities because of their geographical isolation and the legal or customary restrictions on marriage with both whites and blacks (see also Berry 1963). Most recently, DeMarce (1992, 1993)——a professional historian and genealogist——has documented Indian––white, black––white, and black––Indian amalgamations among the historic source populations of Melungeons. She also traces the likely migration of major Melungeon families from west central Virginia into the core area of northeast Tennessee where most people who now call themselves Melungeon trace their lineage.
P1: KVN
[sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 BIOETHICS IN ACTION 161] Until the early 1990s, these scholarly representations remained unchallenged by Melungeons themselves, simply because few people actually admitted to being one. Berry’s informants told him only that he would find Melungeons "across the creek" or “in the next hollow" (Berry 1963: 17). Price learned how to identify typical Melungeon surnames and physical traits from individuals who specifically disclaimed the identity. Beale noted that in the 1950 Tennessee census, Individuals locally known as Melungeon were most often marked by census workers as white, less often as Negro, and occasionally as Indian. He emphasizes that the designation of tri-racial comes from the outside investigator, not the groups themselves. In fact, "the mixed-blood individual will usually insist——with vehemence, if necessary——that there is no Negro ancestry in his family . . . but that he is partly Indian"(Beale 1957: 188). Cavender (1981) found the same situation during fieldwork
in Hancock County, Tennessee, in 1979 and 1980.
People identified by
others as Melungeon usually denied the very existence of the group. Most
whites, moreover, used the term simply as an epithet for anyone who was poor or
had a suspected black ancestor. People interviewed by the above researchers
presumably did not self-identify as Melungeon for several reasons: to escape
the term’s lower class connotations (shiftless, backwards, thieving); to avoid
the danger to one’s rights and status from acknowledging black ancestry
(seeDeMarce 1992: 6––7); or simply because the term no longer existed as a
meaningful ethnic marker. "Melungeon" during this period was an
exonym, a term that outsiders used to identify the group, but that no one used
to label themselves (see Puckett,
2001). The word reinforced the class hierarchy and racial boundaries of southern Appalachia.
However, the meaning and uses of the term began to change in the 1960s. In 1966, two economists, professors from Jefferson City, Tennessee, conducted a regional economic study of Hancock County, at that time among the ten poorest counties in the nation. They recommended the development of tourism and, in particular, suggested "a drama featuring the mystery of the Melungeon settlement in the county . . . [t]he natural spin-off from the drama would be an outlet for handicraft items" as well as food and lodging services for tourists (quoted in Ivey 1977: 102). The play Walk Towards the Sunset: The Melungeon Story——a sentimental narrative about two centuries of anti-Melungeon prejudice——opened in 1969 in the Hancock County town of Sneedville (Beale 1990).
The play produced a short-lived tourism boom, but it also inaugurated a deeper change in the value and significance of Melungeon identity. In 1973, Sneedville residents began for the first time to identify themselves as Melungeon or to acknowledge Melungeon ancestry (Ivey 1977). Only a few years later, a self-labeled insider to the group complained to Cavender that some of the people "coming out of the closet" as Melungeons were actually imposters (Cavender 1981: 32). The next phase in this process of ethnic reinvention began two decades later with the publication of The Melungeons: The Resurrection of a Proud People (Kennedy P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document class) August 9, 2005 20:14 162 P. BRODWIN 1997, first edition published in 1994). In his book, N. Brent Kennedy, PhD, the vice-chancellor of development at Clinch Valley College, Virginia, describes how his struggle with sarcoidosis, a chronic inflammatory disease, led him to reconstruct his family genealogy, embrace his Melungeon heritage, and explore the origin and racial makeup of the group. Now in its second edition, the book serves as the first contact for many people entering Melungeon circles. Kennedy also enlisted academic support to find the Melungeon Research Committee (now the Melungeon Heritage Association [MHA]), and he organized the growing interest in Melungeon identity into a series of yearly meetings. The "First Union," held in 1997 at ClinchValley College with over 500 attendees, featured talks on genealogy and grantsmanship, along with Appalachian music and storytelling.
2001). The word reinforced the class hierarchy and racial boundaries of southern Appalachia.
However, the meaning and uses of the term began to change in the 1960s. In 1966, two economists, professors from Jefferson City, Tennessee, conducted a regional economic study of Hancock County, at that time among the ten poorest counties in the nation. They recommended the development of tourism and, in particular, suggested "a drama featuring the mystery of the Melungeon settlement in the county . . . [t]he natural spin-off from the drama would be an outlet for handicraft items" as well as food and lodging services for tourists (quoted in Ivey 1977: 102). The play Walk Towards the Sunset: The Melungeon Story——a sentimental narrative about two centuries of anti-Melungeon prejudice——opened in 1969 in the Hancock County town of Sneedville (Beale 1990).
The play produced a short-lived tourism boom, but it also inaugurated a deeper change in the value and significance of Melungeon identity. In 1973, Sneedville residents began for the first time to identify themselves as Melungeon or to acknowledge Melungeon ancestry (Ivey 1977). Only a few years later, a self-labeled insider to the group complained to Cavender that some of the people "coming out of the closet" as Melungeons were actually imposters (Cavender 1981: 32). The next phase in this process of ethnic reinvention began two decades later with the publication of The Melungeons: The Resurrection of a Proud People (Kennedy P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document class) August 9, 2005 20:14 162 P. BRODWIN 1997, first edition published in 1994). In his book, N. Brent Kennedy, PhD, the vice-chancellor of development at Clinch Valley College, Virginia, describes how his struggle with sarcoidosis, a chronic inflammatory disease, led him to reconstruct his family genealogy, embrace his Melungeon heritage, and explore the origin and racial makeup of the group. Now in its second edition, the book serves as the first contact for many people entering Melungeon circles. Kennedy also enlisted academic support to find the Melungeon Research Committee (now the Melungeon Heritage Association [MHA]), and he organized the growing interest in Melungeon identity into a series of yearly meetings. The "First Union," held in 1997 at ClinchValley College with over 500 attendees, featured talks on genealogy and grantsmanship, along with Appalachian music and storytelling.
7 Subsequent meetings have been held
yearly in Kentucky and Tennessee. People who consider hemselves Melungeon
regularly attend these meetings, and they also participate in a vast web
presence of family associations and competing home pages that assert different
origin theories or explore connections with African-American and Native
American groups. In the 1990s, therefore, thousands of people began to claim Melungeon
identity or descent. The exonym became an autonym. Individuals who once shunned
the label (or did not even know it existed) now claim it publicly and use it as
an entree into new face-to-face as well as virtual communities. As with many merging
identity movements, conflicts over authenticity and the prerogative to define
the group’s essence and boundaries divide today’s Melungeons.
8 First of all, people living in the
Appalachians who have personally suffered from the stigma of poverty and
suspected black ancestry have different reasons to proclaim themselves
Melungeon than do those whose ancestors left the region three or four generations
ago and securely enjoy white status. Even locally, the better-educated individuals
who organize the yearly gatherings inadvertently separate themselves from the
poorer majority, who often cannot afford the registration fees and the time off from work. In fact, the majority
of people attending the Fourth Union held in 2002 were retirees, often from out
of state, with a sprinkling of white-collar professionals. Finally, certain
Melungeons privilege their Indian descent and seek legal recognition as a
tribe, thereby alienating themselves
from the MHA, which explicitly does not seek tribal status. The revitalization
of Melungeon identity also participates in broader social changes. According to
Darlene Wilson, a historian and log-time MHA board member, the Melungeon
movement aims to reverse the economic and racial caste system of the United
States (Wilson 1998). She believes Melungeon ethnic activities hasten the
long-term retreat of American racism, a viewpoint echoed on the MHAweb page:"We
firmly believe in the dignity of all such mixed ancestry groups of southern
Appalachia and commit to preserving their rich heritage of racial harmony and
diversity."
Kennedy’’s book, a touchstone for many
present-day (P1: KVN sjny-medi-ny00007423
medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document class) August 9, 2005 20:14
BIOETHICS IN ACTION 163 ) Melungeons,
adopts the common formulae of late 20th century identity politics: The
restrictive choices of either quietly accepting our "stigma" [as
Melungeon] or sweeping it under the rug in the pitiful self-delusion of
"being like everyone else" were unacceptable. To me there seemed to
be a third, admittedly blasphemous option: to embrace our heritage——whatever it
might be——and wear it like a banner . . . . My mother, at first uneasy over my decision
to come out of the Melungeon closet, quickly came to understand. (Kennedy 1997:
Intentionally or not, Kennedy’s self-description recalls the shame of trying to
pass as white or to normalize a physical disability, as well as the ordeal of acknowledging
one’s homosexuality to family members. As the Melungeons’most well-known
spokesman, Kennedy demands recognition in terms similar to those employed by
many other groups in the national political scene. His calls to overcome
internalized stigma, to make authentic contact with oneself, and to honor group
distinctiveness in the face of
pressures to assimilate are all standard ingredients in contemporary politics
of difference (Taylor 1992: 38 and
passim).
For many Melungeons, the right to establish their own origin story is the most public demand for recognition. Of all the speculations about origins that circulated in popular accounts, the claim of Portuguese descent has the oldest published history, dating to at least 1848.11 Academic and popular writers have long reported that individuals classified as Melungeon (when that term was still an exonym) would call themselves Portuguese, often pronounced "Porty-ghee." Kennedy (1997) supports the Portuguese theory and adds to it ancestry claims about Turks and Moors who settled in the colonial southeastern United States. His complicated account comes wrapped in a demand to respect his Melungeon ancestors who, he says, were telling the truth when they described themselves as Portuguese. The ""tri-racial isolate" theory, he writes, traces white ancestry exclusively to the British Isles. It is not only incorrect, it is also politically damaging, for it denies people "the God-given right to claim their national or specific ethnic heritages" (Kennedy 1997: 100). For Kennedy and his supporters, establishing an authoritative origin story is an a priori right of the Melungeon community. This collectivity, like all others, deserves recognition in terms of its own choosing, even (or especially) in the face of outsider experts. Many Melungeons fiercely support Kennedy’s ideas about Portuguese origins. They reject the standard scholarly opinion that the group arose from an amalgam of northern Europeans, Africans, and Native Americans.
They claim that calling Melungeons a "tri-racial isolate" connotes inbreeding, inferiority, and hence reproduces the elitist stereotype of Appalachian residents. Claims of Portuguese descent generate polemics for a second and even more highly charged reason. Scholarly opinion holds that Melungeons (and other mixed-race groups) historically called themselves Portuguese to deflect suspicion of African ancestry.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 164 P. BRODWIN ] .
For many Melungeons, the right to establish their own origin story is the most public demand for recognition. Of all the speculations about origins that circulated in popular accounts, the claim of Portuguese descent has the oldest published history, dating to at least 1848.11 Academic and popular writers have long reported that individuals classified as Melungeon (when that term was still an exonym) would call themselves Portuguese, often pronounced "Porty-ghee." Kennedy (1997) supports the Portuguese theory and adds to it ancestry claims about Turks and Moors who settled in the colonial southeastern United States. His complicated account comes wrapped in a demand to respect his Melungeon ancestors who, he says, were telling the truth when they described themselves as Portuguese. The ""tri-racial isolate" theory, he writes, traces white ancestry exclusively to the British Isles. It is not only incorrect, it is also politically damaging, for it denies people "the God-given right to claim their national or specific ethnic heritages" (Kennedy 1997: 100). For Kennedy and his supporters, establishing an authoritative origin story is an a priori right of the Melungeon community. This collectivity, like all others, deserves recognition in terms of its own choosing, even (or especially) in the face of outsider experts. Many Melungeons fiercely support Kennedy’s ideas about Portuguese origins. They reject the standard scholarly opinion that the group arose from an amalgam of northern Europeans, Africans, and Native Americans.
They claim that calling Melungeons a "tri-racial isolate" connotes inbreeding, inferiority, and hence reproduces the elitist stereotype of Appalachian residents. Claims of Portuguese descent generate polemics for a second and even more highly charged reason. Scholarly opinion holds that Melungeons (and other mixed-race groups) historically called themselves Portuguese to deflect suspicion of African ancestry.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 164 P. BRODWIN ] .
DeMarce (1993) and Henige (1998) both
cite an 1872 Tennessee SupremeCourt decision that classified a Melungeon woman
as a descendent of ancient Carthagenians who long resided in Portugal, and
hence not Negro. The ruling legalized her marriage to a white man and enabled
her child to inherit the father’s estate (DeMarce 1993: 33). In general, many people
insecure about their racial identity in the antebellum and Jim Crow South tried
to pass as white by claiming Portuguese or other southern European ancestry
(Everett 1999: 370).
According to Henige (1984), the label Portuguese is a contrived defense mechanism that reinforces one’s endangered white status. Henige (1998: 280) applied this perspective to Kennedy’s book, which he faults for its studied ambivalence about acknowledging black ancestry. Henige’s critique as well as the long history of claims about Portuguese descent made by groups in the South raises the stakes considerably.
According to Henige (1984), the label Portuguese is a contrived defense mechanism that reinforces one’s endangered white status. Henige (1998: 280) applied this perspective to Kennedy’s book, which he faults for its studied ambivalence about acknowledging black ancestry. Henige’s critique as well as the long history of claims about Portuguese descent made by groups in the South raises the stakes considerably.
For Brent Kennedy, proving the Portuguese
origin story would not only vindicate the right of Melungeons to author their
own history. It would also exonerate him and the Melungeons from charges of
crypto-racism and of disguising the truth about group origins: serious matters
in the current climate of identity politics.
IDENTITY CLAIMS AND POPULATION GENETICS
To convince others to accept his theory of Melungeon origins, Kennedy turned to population genetics:The call for DNA really came from outside the community, not within. It really came from scholars who took offense at our writings, who criticized these outlandish claims that differed from the standard tri-racial accounts. They said that these claims cannot be substantiated, given the historical records that we have here in Virginia, where we think the core Melungeon population originated. They said that the only way you can prove these theories of Mediterranean, Turkish, Portuguese, or Jewish origin, or the possible source for the illnesses that people have, is through DNA (Brent Kennedy).13
In the early 1990s, Kennedy had consulted several academic geneticists who told him that a proper population study——with DNA samples from both Melungeons and comparison populations in Portugal and Turkey——would cost over a million dollars. In the following years, however, advances in mapping the human genome brought the price down considerably. Thanks to PCR technology and new databases of regionally and ethnically labeled DNA, geneticists can now take DNA samples locally and make probabilistic statements about population history without collecting new samples from distant parts of the world (see Bradman and Thomas 1998, and for a popular account, Sykes 2001).
In 1998, Kennedy presented his ideas for genetics research to Kevin Jones——a British molecular biologist and newly arrived assistant professor at the University Although he had never heard of the Melungeons, Jones took on the project because he was intrigued by the patterns of unusual diseases (e.g., thalassemia and Familial Mediterranean Fever) typically associated with southern European ancestry that also occur among white, presumably Scotch––Irish, Appalachians.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 BIOETHICS IN ACTION 165] of Virginia College at Wise (the re-named ClinchValley College]
IDENTITY CLAIMS AND POPULATION GENETICS
To convince others to accept his theory of Melungeon origins, Kennedy turned to population genetics:The call for DNA really came from outside the community, not within. It really came from scholars who took offense at our writings, who criticized these outlandish claims that differed from the standard tri-racial accounts. They said that these claims cannot be substantiated, given the historical records that we have here in Virginia, where we think the core Melungeon population originated. They said that the only way you can prove these theories of Mediterranean, Turkish, Portuguese, or Jewish origin, or the possible source for the illnesses that people have, is through DNA (Brent Kennedy).13
In the early 1990s, Kennedy had consulted several academic geneticists who told him that a proper population study——with DNA samples from both Melungeons and comparison populations in Portugal and Turkey——would cost over a million dollars. In the following years, however, advances in mapping the human genome brought the price down considerably. Thanks to PCR technology and new databases of regionally and ethnically labeled DNA, geneticists can now take DNA samples locally and make probabilistic statements about population history without collecting new samples from distant parts of the world (see Bradman and Thomas 1998, and for a popular account, Sykes 2001).
In 1998, Kennedy presented his ideas for genetics research to Kevin Jones——a British molecular biologist and newly arrived assistant professor at the University Although he had never heard of the Melungeons, Jones took on the project because he was intrigued by the patterns of unusual diseases (e.g., thalassemia and Familial Mediterranean Fever) typically associated with southern European ancestry that also occur among white, presumably Scotch––Irish, Appalachians.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 BIOETHICS IN ACTION 165] of Virginia College at Wise (the re-named ClinchValley College]
Brent Kennedy, however, wanted the
genetics research to authenticate certain ancestry claims, not to reconstruct disease
patterns, and he essentially steered the research in his direction. Kennedy oversaw
the collection of DNA samples from descendents of the historic core Melungeon
population, and Jones genotyped the population (by calculating the frequency of
particular makers on the mitochondrial DNA (mtDNA) and the non recombineng portion
of the Y chromosome), and compared Melungeon frequencies to those recorded for
various world populations. (Jones has not yet published the Melungeon data, but
he says his approach parallels the work by Beale et al. 2002 and Wilson et al.
2001.)
The cultural politics of self-ascribed Melungeons interacted with the technical demands of population genetics to produce the ""rough edges"" of Jones’’s research: the zones of conflict between professional and lay expectations (see Bosk 1992). To begin with, this sort of research requires a clearly identified core population for sampling. However, the inclusion criteria for this group are essentially contested. People who now call themselves Melungeon live both in southern Appalachia and across the United States show a range of complexions and physical types, and bear a number of surnames. Conversely, many people with the same residence, appearance, and surnames do not identify as Melungeons. By necessity, Jones
relied entirely on Brent Kennedy to delineate the core Melungeon group.
I decided whom to sample. I think I know who are the original Melungeons, those who lived between 1725 and 1790. I asked myself, can we locate the descendents of those people? Hence, we chose seven or eight people on the Virginia side and ten on the Vardy, Tennessee, side.We began with these people who everyone agrees are the original Melungeons. It was very easy to find their descendents. We all know who was related to whom; we just had to find the right cousin (Brent Kennedy). 14 At this stage, Kevin Jones’s role was to ensure that enough samples were collected, that they came from independent lineages and that the descent was traced exclusively through the female or male line, a requirement for research with mtDNA and Y chromosome markers. In contrast to the HGDP, the process of collecting Melungeon DNA did not raise any questions about group sovereignty or informed consent. Kennedy presented his plan for sampling to the Vardy Historical Society, a local community board of self-identified Melungeons. They immediately endorsed it, as did the people approached in Virginia. In fact, Melungeons began to request DNA testing in numbers that far exceeded the needs of research and the technical capacity in Jone’s Laboratory.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 166 P. BRODWIN]
At least a thousand people requested that their DNA be included in the analysis. Kevin Jones often received unsolicited hair samples in the mail from people who had heard of the study but were not chosen as descendents of the core Melungeon group. In the end, Jones included approximately 120 mtDNA and 30 Y chromosome samples. To preserve the anonymity of subjects, each donor received a numerical code along with their collecting kit for hair roots and cheek swabs. The chief difficulty with DNA sampling came from people’’s racial anxiety.
During the study, both Brent Kennedy and Kevin Jones received death threats, and Jones told me he received several anonymous warnings by telephone as well as the accusation that Kennedy was sampling the darkest people he could find. Jones told me that the people issuing these threats were simply afraid that the DNA study would find a black in their family past, and my conversations with attendees at the Fourth Union ratify his interpretation. According to one woman long active in Melungeon affairs, many more blacks had come to the first few Melungeon gatherings, but the weight of opinion soon decreed that "if you were colored, you were not going to be counted as a Melungeon." Other attendees who were researching their family lines told me bluntly that people are afraid that information about their black ancestors will become public.
Their comments suggest that when participants in Melungeon activities talk about identity, they effectively portray themselves as white, despite the official rhetoric about mixed-race descent (see Pucket 2001). Even Brent Kennedy estimates that a third of self-ascribed Melungeons are afraid of the ramifications of finding black ancestry, although he says they would eventually accept the information.
Kevin Jones finished a preliminary analysis of the genetic data by early 2002.However, during the prior year, he often wondered about the wisdom of beginning work with the Melungeons.15 First of all, he thought that the politics of identity completely overshadowed any interest in legitimate science. Each Melungeon faction wanted something different from the genetic study. Kennedy and his supporters wanted evidence of Portuguese or Turkish origins. People seeking tribal recognition, or at least affirmation of their subjective sense of Indian ness, wanted to see Native American ancestry. At least a handful of individuals wanted to shut down the whole project for fear of any evidence of black ancestry.
The cultural politics of self-ascribed Melungeons interacted with the technical demands of population genetics to produce the ""rough edges"" of Jones’’s research: the zones of conflict between professional and lay expectations (see Bosk 1992). To begin with, this sort of research requires a clearly identified core population for sampling. However, the inclusion criteria for this group are essentially contested. People who now call themselves Melungeon live both in southern Appalachia and across the United States show a range of complexions and physical types, and bear a number of surnames. Conversely, many people with the same residence, appearance, and surnames do not identify as Melungeons. By necessity, Jones
relied entirely on Brent Kennedy to delineate the core Melungeon group.
I decided whom to sample. I think I know who are the original Melungeons, those who lived between 1725 and 1790. I asked myself, can we locate the descendents of those people? Hence, we chose seven or eight people on the Virginia side and ten on the Vardy, Tennessee, side.We began with these people who everyone agrees are the original Melungeons. It was very easy to find their descendents. We all know who was related to whom; we just had to find the right cousin (Brent Kennedy). 14 At this stage, Kevin Jones’s role was to ensure that enough samples were collected, that they came from independent lineages and that the descent was traced exclusively through the female or male line, a requirement for research with mtDNA and Y chromosome markers. In contrast to the HGDP, the process of collecting Melungeon DNA did not raise any questions about group sovereignty or informed consent. Kennedy presented his plan for sampling to the Vardy Historical Society, a local community board of self-identified Melungeons. They immediately endorsed it, as did the people approached in Virginia. In fact, Melungeons began to request DNA testing in numbers that far exceeded the needs of research and the technical capacity in Jone’s Laboratory.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 166 P. BRODWIN]
At least a thousand people requested that their DNA be included in the analysis. Kevin Jones often received unsolicited hair samples in the mail from people who had heard of the study but were not chosen as descendents of the core Melungeon group. In the end, Jones included approximately 120 mtDNA and 30 Y chromosome samples. To preserve the anonymity of subjects, each donor received a numerical code along with their collecting kit for hair roots and cheek swabs. The chief difficulty with DNA sampling came from people’’s racial anxiety.
During the study, both Brent Kennedy and Kevin Jones received death threats, and Jones told me he received several anonymous warnings by telephone as well as the accusation that Kennedy was sampling the darkest people he could find. Jones told me that the people issuing these threats were simply afraid that the DNA study would find a black in their family past, and my conversations with attendees at the Fourth Union ratify his interpretation. According to one woman long active in Melungeon affairs, many more blacks had come to the first few Melungeon gatherings, but the weight of opinion soon decreed that "if you were colored, you were not going to be counted as a Melungeon." Other attendees who were researching their family lines told me bluntly that people are afraid that information about their black ancestors will become public.
Their comments suggest that when participants in Melungeon activities talk about identity, they effectively portray themselves as white, despite the official rhetoric about mixed-race descent (see Pucket 2001). Even Brent Kennedy estimates that a third of self-ascribed Melungeons are afraid of the ramifications of finding black ancestry, although he says they would eventually accept the information.
Kevin Jones finished a preliminary analysis of the genetic data by early 2002.However, during the prior year, he often wondered about the wisdom of beginning work with the Melungeons.15 First of all, he thought that the politics of identity completely overshadowed any interest in legitimate science. Each Melungeon faction wanted something different from the genetic study. Kennedy and his supporters wanted evidence of Portuguese or Turkish origins. People seeking tribal recognition, or at least affirmation of their subjective sense of Indian ness, wanted to see Native American ancestry. At least a handful of individuals wanted to shut down the whole project for fear of any evidence of black ancestry.
Moreover, individual DNA donors were
impatient to learn about their family lines, even though Jones was conducting a
population study which is unsuited for questions about individual genealogy.
Finally, in his dealings with theMelungeon community, Jones encountered both a
broad suspicion that scientists were secretive and insensitive and the na ¨tive
faith that his particular project would provide definitive answers about family
history. He knew his research could not satisfy these contradictory expectations.
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Jones publicly presented his data in a
much-anticipated talk at the Fourth Melungeon Union in June 2002.He first spoke
about the open-ended nature of all scientific work and emphasized the anonymity
of the samples and his own objectivity (as a British citizen and
non-Melungeon). He described the analysis of the aggregate DNA sample into the
categories of African, Native American, and Eurasian used by GenBank (the NIH
database for all publicly available genetic sequences). Finally, he presented
the numerical data: The numbers are relatively small . . But nevertheless,
about five percent of people who claim to be Melungeon reflect a Native
American ancestry on their female side, and about five percent reflect an
African-American . . . . That leaves an awful lot of people who fall under the
Eurasian category, and that is no real surprise…Because populations have moved
around Europe so much, that there are some sequences that you find anywhere in
Europe. They don’’t tell us anything about likely origins. And when you look at
those Eurasian Melungeon samples, an awful lot of them fall within that
category. They are generic type sequences. They could be from England, Ireland,
France, they could be from Spain, they could be from Turkey, anywhere within
that Eurasian category.
(Kevin Jones)16 He then described the few unusual (non-generic) sequences that he found: among the mtDNA samples, four sequences that matched with the Siddi (a North Indian people of East African descent) and couple of sequences that matched from Turkey; among the Y chromosomes, some matches from Anatolia and Syria.
Jones also tried to address the anxieties
and expectations in his audience. He explicitly used the term
"multiracial," instead of "tri-racial isolate" to describe Melungeons.
He underscored the considerable genetic diversity that he found in order to
dispel a common stereotype. This population, he said, is as diverse as just
about any other human population, "so, if anyone has ever said, ‘‘You
inbred Melungeon!’’ they are lying." Finally, he emphasized that genetics
does not and should not affect the sense of Melungeon identity: If you are
hoping for a DNA sequence or a Y-chromosome type that says ‘‘You are a Melungeon,’’
forget it. It doesn’’t exist . . . You
know what it means to be Melungeon or feel Melungeon or to be discriminated
against as a Melungeon. It’’s a cultural identity which is real and important,
but it does not reflect any genetic basis. And I hope that with the variability
that exists, apparently, within this population, that’s something to be proud
of. Because that culture and that identity have been maintained in the face of
input from all sorts of people. (Kevin Jones)
In his public performance, Kevin Jones
tried to balance what people wanted to hear with what he could legitimately
tell them. He knows there is no such thing as a definitional Portuguese or
Turkish haplotype. He knows that the term tri-racial is just as meaningful (or
meaningless) as multiracial, given the models of human variation in today’’s
genetics. He also knows that the percentages he gave are probabilistic figures,
subject to sample size, mathematical models, and the particular datasets used
at GenBank and the Center for Genetic Anthropology, University College of
London (which sequenced the Y chromosome data). His strategy thus involved
providing enough details to please everyone without compromising himself. Speaking
to a crowd of journalists (from Smithsonian, Discover, and Wired, as well as
local media outlets) after his talk, he explained that calling the vast majority
of genetic markers pan-European does not necessarily mean that Melungeon ancestors
did not sail from Portugal. "All I’’ve done is contributed data," he
explained, "and people can make of that what they will. That’s what I do
as a scientist." Intended for the media, his remark demonstrates a benign
commitment to scientific objectivity. What he did not add publicly is that his
science cannot answer the questions about collective identity that set the
whole project in motion.
Reflecting on his performance a few days later, Jones told me that what bothers him the most is that the Melungeon community neither understands nor cares about population genetics. People are only interested in the most exotic ancestries or their own family lines, and Jones already heard them start to weave the discovery of Siddi sequences into stories about Gypsy relatives. Indeed, people in Melungeon circles are avid customers of commercial genetic web sites such as FamilyTreeDNA.com (which sent its CEO to the Fourth Union). Founded in 1999, this company performs various types of mtDNA and Y chromosomal analysis for a few hundred dollars each, and customers purchase them to verify relatedness between cousins and also to discover if they have certain markers (SNPs, or single nucleotide polymorphisms), indicating likely Native American or Cohanim (hence, Jewish) ancestry. Jones attributes the mismatch between popular expectations and his scientific expertise to people’s overwhelming
devotion to genealogy through genetics.
Reflecting on his performance a few days later, Jones told me that what bothers him the most is that the Melungeon community neither understands nor cares about population genetics. People are only interested in the most exotic ancestries or their own family lines, and Jones already heard them start to weave the discovery of Siddi sequences into stories about Gypsy relatives. Indeed, people in Melungeon circles are avid customers of commercial genetic web sites such as FamilyTreeDNA.com (which sent its CEO to the Fourth Union). Founded in 1999, this company performs various types of mtDNA and Y chromosomal analysis for a few hundred dollars each, and customers purchase them to verify relatedness between cousins and also to discover if they have certain markers (SNPs, or single nucleotide polymorphisms), indicating likely Native American or Cohanim (hence, Jewish) ancestry. Jones attributes the mismatch between popular expectations and his scientific expertise to people’s overwhelming
devotion to genealogy through genetics.
The commercial web sites cater to people’s
desire to turn a trivial genetic fact into an appealing identity claim, Jones
said, and the Melungeons approached his own project with the same desire. In
the case of the Melungeons, a vast distance in world view and scientific
fluency separates the geneticist from the people who want him to adjudicate
their identity claims. That distance constitutes the rough edge of Kevin
Jones’s work, where lay and expert views diverge most sharply. In his public
presentation, Jones managed to avoid open hostility by carefully stating what
the data could support and what it does not deny. He allowed people to pursue
their quests for recognition without undue impediment.However, Jones cannot so
easily resolve the professional’s side of the rough edge. In our conversations,
he stated the dilemma in the following terms. What is his responsibility as a
scientist, when his expertise is so broadly misunderstood or ignored? Jones
does not expect untrained people to master or even appreciate the complexity of
population genetics. Is it more dangerous if
population geneticists study a group searching for its origins, or if
they do not study it? [P1: KVN sjny-medi-ny00007423
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BIOETHICS IN ACTION 169] If they
study the group, its members will inevitably distort the findings or get angry
when they are presented in their legitimate but impenetrable complexity. If
scientists do not study the group, people will use commercial genetic testing services
and thereby satisfy their lust for definitive answers but not learn anything meaningful
about themselves. In the end, Jones feels caught up in an impossible conflict
between the role of scientist (addressing other experts) and arbiter of community
origins (addressing Melungeons). By definition, fulfilling one role betrays the
obligations of the other.
CONCLUSION
The HGDP and Kevin Jones’s work with the Melungeons illustrate the political and conceptual vulnerabilities of human population genetics. The HGDP was a global undertaking with little direct benefit to the groups or individuals to be sampled. Indigenous rights advocates saw an opportunity to advance their sovereignty claims by opposing the HGDP in front of the highest international authorities. The HGDP personnel responded to the political firestorm by writing the MEP: a recognizable object of ready-made bioethics, produced by negotiations between professionals and their lay critics. The Melungeon case unfolded on a much smaller scale and in a different political landscape.
CONCLUSION
The HGDP and Kevin Jones’s work with the Melungeons illustrate the political and conceptual vulnerabilities of human population genetics. The HGDP was a global undertaking with little direct benefit to the groups or individuals to be sampled. Indigenous rights advocates saw an opportunity to advance their sovereignty claims by opposing the HGDP in front of the highest international authorities. The HGDP personnel responded to the political firestorm by writing the MEP: a recognizable object of ready-made bioethics, produced by negotiations between professionals and their lay critics. The Melungeon case unfolded on a much smaller scale and in a different political landscape.
Brent Kennedy, an ethnic insider, led a
genetics project that he thought would justify his claim of Portuguese descent.
Many Melungeons then eagerly requested DNA sampling as part of their battle
against the widespread mis-recognition or non-recognition of their distinctive
identity. The conflicts between Kevin Jones and the Melungeons grew not from a
power imbalance, but instead from incommensurable truth claims about genetics
data. The struggles that preoccupied Jones for over two years do not lend
themselves to the terms of formal bioethics (e.g., balancing professional
prerogatives against individual or group rights). The very circumstances that
made his project possible——
Brent Kennedy’s high profile among Melungeons and people’s strong motivation to donate DNA——meant that Jones did not control the goals of research or the interpretation of findings. Realizing that he had stopped doing science as usual, Jones improvised his response to the crosscurrents of Melungeon identity politics. At times, he was baffled by people’s disinterest in what genetics could legitimately say about population history. At other times, and in public, he confirmed the Melungeons own assertion of ethnic pride. Most importantly, though, he became convinced of the incommensurability between how experts and non-experts interpret and use genetic data.
These cases suggest what drives professionals in human population genetics to turn to the vocabulary and procedures of modern bioethics. In both cases, routine scientific work was disrupted, and scientists labeled the problem as ethical [P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document class) August 9, 2005 20:14 170 P. BRODWIN] as a strategy of conflict management (see Bosk 1999). Labeling a problem as ethical changes how professionals and lay-people respond to it, and inaugurates further (more or less) public negotiations. This rhetorical act does not dissolve the conflict, but nonetheless shifts how it unfolds and justifies different standards of evidence and modes of persuasion. This perspective applies chiefly to the political vulnerability of human population genetics: the unequal relation between researchers and people providing DNA samples.` This inequality provoked the controversy over the HGDP, and the project planners tried to resolve it by inscribing more equal relations in their MEP. The field’s political vulnerability did not affect Kevin Jones’s work with the Melungeons, largely because Brent Kennedy, an ethnic insider, sponsored the project, kept control of its aims, and
thereby guaranteed people’s enthusiasm to donate their DNA. The political crosscurrents which did plague Jones’s work were intramural concerns among different factions of Melungeons, but these typically do not drive ethical self-scrutiny among professionals. Kevin Jones faced the conceptual vulnerability of human population genetics: the mismatch between expert and non-expert views about the relevance of genetics for cultural identity (see Elliott and Brodwin 2002). He grappled with this problem
when he began the research and again when he announced his findings. Taking DNA samples from Melungeons logically presupposes, one knows who counts as a Melungeon in the first place, but the science of human population genetics cannot provide the answer. Geneticists cannot decree the inclusion and exclusion criteria actually used to decide group membership, for these are irreducibly social judgments. At most, geneticists offer laboratory data which support, or do not support, judgments that are historically contingent, politically contested, and nestled in a repertoire of symbols about descent, family, kin, community, and nation. Interpreting the data produced by genetics laboratories runs into the same
problem.
Brent Kennedy’s high profile among Melungeons and people’s strong motivation to donate DNA——meant that Jones did not control the goals of research or the interpretation of findings. Realizing that he had stopped doing science as usual, Jones improvised his response to the crosscurrents of Melungeon identity politics. At times, he was baffled by people’s disinterest in what genetics could legitimately say about population history. At other times, and in public, he confirmed the Melungeons own assertion of ethnic pride. Most importantly, though, he became convinced of the incommensurability between how experts and non-experts interpret and use genetic data.
These cases suggest what drives professionals in human population genetics to turn to the vocabulary and procedures of modern bioethics. In both cases, routine scientific work was disrupted, and scientists labeled the problem as ethical [P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document class) August 9, 2005 20:14 170 P. BRODWIN] as a strategy of conflict management (see Bosk 1999). Labeling a problem as ethical changes how professionals and lay-people respond to it, and inaugurates further (more or less) public negotiations. This rhetorical act does not dissolve the conflict, but nonetheless shifts how it unfolds and justifies different standards of evidence and modes of persuasion. This perspective applies chiefly to the political vulnerability of human population genetics: the unequal relation between researchers and people providing DNA samples.` This inequality provoked the controversy over the HGDP, and the project planners tried to resolve it by inscribing more equal relations in their MEP. The field’s political vulnerability did not affect Kevin Jones’s work with the Melungeons, largely because Brent Kennedy, an ethnic insider, sponsored the project, kept control of its aims, and
thereby guaranteed people’s enthusiasm to donate their DNA. The political crosscurrents which did plague Jones’s work were intramural concerns among different factions of Melungeons, but these typically do not drive ethical self-scrutiny among professionals. Kevin Jones faced the conceptual vulnerability of human population genetics: the mismatch between expert and non-expert views about the relevance of genetics for cultural identity (see Elliott and Brodwin 2002). He grappled with this problem
when he began the research and again when he announced his findings. Taking DNA samples from Melungeons logically presupposes, one knows who counts as a Melungeon in the first place, but the science of human population genetics cannot provide the answer. Geneticists cannot decree the inclusion and exclusion criteria actually used to decide group membership, for these are irreducibly social judgments. At most, geneticists offer laboratory data which support, or do not support, judgments that are historically contingent, politically contested, and nestled in a repertoire of symbols about descent, family, kin, community, and nation. Interpreting the data produced by genetics laboratories runs into the same
problem.
According to Jones, his mtDNA and Y chromosome
analysis say nothing about Melungeon claims to Portuguese identity, and not
only for technical reasons (i.e., the probabilistic nature of population
genetics data and the lack of a Portuguese haplotype). The urgency of
Melungeons’ claims of Portuguese (or other Mediterranean) identity unfolds against a set of background
assumptions and histories: the categories of black and white in the American
racial system and the elitism of outsider discourses about Appalachia. Their
assumptions are not even conceivable within the terms of human population
genetics. At most, a geneticist could argue that American racial categories
have no scientific justification, but the conversation would effectively end there. Population genetics data, once it
leaves the laboratory, get inserted into wildly divergent interpretive schemes.
When population geneticists work in
partnership with community members according to their stated needs (in a noble
effort to P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e
MEDI document class) August 9, 2005 20:14 BIOETHICS IN ACTION 171 escape the
field’s political vulnerability), they risk running into its conceptual vulnerability.
They cannot offer the stable, objective definitions of group identity that
people often demand (see Brodwin 2002). Their science threatens to become irrelevant
and their obligations contradictory, but this produces private anxiety for the
geneticist, not politicized and public debate. The end result is a feeling of futility
about crossing the expert/non-expert divide. In the case of the HGDP, its centerpiece
ethics protocol managed to restate at least part of the critics’’ general concerns,
even if it did not (and could not) fully address their political goals.
However, in the case of the Melungeons, the incommensurability between
scientific and popular truth claims about "genetic identity" reflects
the American dilemma about race and identity, a set of concerns that runs skew
to the stable representations and procedures of American bioethics. No final
product of bioethics, therefore, emerged to cover over Kevin Jones’s
bewilderment about professional obligation and contradictory loyalties.
Finally, the two cases illustrate the ethnographic study of bioethics in action. Two main questions animate this approach. (1) Under what circumstances does explicit talk about values, rights, and obligations break out among researchers or clinicians? In general, this occurs because other social actors interrupt their work routines, question their commitments, or oppose their interests and prerogatives.The ethnographic question concerns why, in a particular context, the old routines suddenly require explicit ethical justification. What practical steps do researchers and clinicians take to survive the shake-up? In particular, why do they respond to the controversy by elaborating an explicitly ethical discourse? And when does their pragmatic response get transformed, after a suitable period of time, into a ready-made product of bioethics?Bioethics in action, therefore, is a matter of muddling through: a real-time struggle to justify one’’s expertise, professional mandate, and actions in the world.
Occasionally, out of the struggle emerges a published text (like the Model Ethical Protocol for Group Consent), which later settles comfortably into the systematic discourse of professional bioethics, ready for future citation by researchers, clinicians, policy-makers, lawyers, and activists. A ready-made product of bioethics is thus the final stage of a particular struggle. But it tends to lose any trace of its construction at a given place and time (cf. Latour 1987). Indeed, the final products of bioethics are often self-consciously framed as a matter of transcendent principles and fundamental rights. The ethnography of bioethics in action peers below the rhetoric of moral necessity to find the earlier story of contingent moves and countermoves. It traces the complicated traffic (of professional routines and their disruption, of competing ideals, interests and agendas) That drove the original controversy as well as people’s decision to frame it in ethical terms.
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NOTES
1. To focus on the celebratory accounts by Jonsen and Callahan is not to reify bioethics, but to illustrate themajorway the field justifies itself in recent interdisciplinary forums (e.g., Kleinman et al. 1999). Of course, people who study the ethical dimensions of medicine and life sciences carry on a lively debate about the boundaries and mission of bioethics. They argue over the relative importance of casuistry, transcendent principles, legal reasoning, narratology, feminism, empirical research, etc. Some prominent figures in the profession refuse to label themselves "bioethicists," and the field has yet to settle key questions about accreditation and the content of graduate study. Unfortunately, the diversity of opinion and approaches often fades away in the standard self-representations of the field made to social scientists as well as in the ""bioethics training"" offered to IRB personnel and clinician-scientists.
2. See important recent overviews by Reardon (2001) and Greely (2001), the latter defending the scientific validity of the HGDP and arguing for its revival. The HGDP generated an enormous literature in several genres: internal planning documents, reports of early meetings, activist manifestos and opinion pieces opposing it, responses by HGDP planners and supporters, critiques from other professionals chiefly cultural anthropologists and ethicists), formal statements by bioethics commissions, and review articles about the entire controversy reflecting different disciplines and interests. From the perspective of ioethics in action, however, not all this literature is equally relevant. Reviews appearing long after the controversy died down and formal pronouncements by high-level organizations privilege stable summaries of ethical principles: the final product of earlier debates whose textual traces are more fragmentary and closely tied to immediate contexts. This paper focuses on the latter genre, especially correspondence between critics and defenders of the HGDP on Native-L, an indigenous rights list-serve (accessible at http://www.nativenet.uthscsa.edu). This is the lively and unsettled rhetorical exchange that produced, through many mediations and over several years, the Model Protocol for Group Consent, which exists as a stable artifact of today’’s ready-made bioethics.
3. For details about the WCIP, see http://www.cwis.org/fwdp/international/scipinfo. text; about CONIC, see nativenet.uthsca.edu/archive/nl/9309/0314.html, and about SAIIC,
see saiic.nativeweb.org/brochure.html (accessed March 2002).
4. The final planning workshop (held in Sardinia in September 1993),which established the formal organization of the global HGDP, expanded and restated this list into four "areas of ethical concern." (Human Genome Diversity Committee 1993) (also known as the Alghero Document). These four areas combine straightforward estatements of accepted research ethics with the anti-racist self-image of human population genetics (see Gannett 2001). The first and most detailed area concerns respect for individuals and cultural integrity and the need for informed consent and anonymity. The second area regulates property rights in DNA; it directs any profits from pharmaceutical patents to benefit the sampled population or individual, and it endorses a single database accessible to all scientists. The remaining areas focus on the interpretation and popular uses of the project’s findings, particularly the need to avoid misuse of genetic data to justify racism, xenophobia, and hypernationalism, and to publicize that genetic science does not support conventional notions of race.
5. Around the same time, at least two other organizations also prepared guidelines for ethical conduct in human population genetics research, UNESCO and the international Human Genome Organization (HUGO) (Greely 1997).
6. Gilbert used contemporary terminology in his list. The Jackson Whites now call themselves the Ramapo Mountain people; the Croatans now call themselves the Lumbee and consider themselves Indian (see Blu 1980).
7. See http://www.geocities.com/bourbonstreet/inn/1stunion.htm.
Finally, the two cases illustrate the ethnographic study of bioethics in action. Two main questions animate this approach. (1) Under what circumstances does explicit talk about values, rights, and obligations break out among researchers or clinicians? In general, this occurs because other social actors interrupt their work routines, question their commitments, or oppose their interests and prerogatives.The ethnographic question concerns why, in a particular context, the old routines suddenly require explicit ethical justification. What practical steps do researchers and clinicians take to survive the shake-up? In particular, why do they respond to the controversy by elaborating an explicitly ethical discourse? And when does their pragmatic response get transformed, after a suitable period of time, into a ready-made product of bioethics?Bioethics in action, therefore, is a matter of muddling through: a real-time struggle to justify one’’s expertise, professional mandate, and actions in the world.
Occasionally, out of the struggle emerges a published text (like the Model Ethical Protocol for Group Consent), which later settles comfortably into the systematic discourse of professional bioethics, ready for future citation by researchers, clinicians, policy-makers, lawyers, and activists. A ready-made product of bioethics is thus the final stage of a particular struggle. But it tends to lose any trace of its construction at a given place and time (cf. Latour 1987). Indeed, the final products of bioethics are often self-consciously framed as a matter of transcendent principles and fundamental rights. The ethnography of bioethics in action peers below the rhetoric of moral necessity to find the earlier story of contingent moves and countermoves. It traces the complicated traffic (of professional routines and their disruption, of competing ideals, interests and agendas) That drove the original controversy as well as people’s decision to frame it in ethical terms.
[P1: KVN sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14 172 P. BRODWIN]
NOTES
1. To focus on the celebratory accounts by Jonsen and Callahan is not to reify bioethics, but to illustrate themajorway the field justifies itself in recent interdisciplinary forums (e.g., Kleinman et al. 1999). Of course, people who study the ethical dimensions of medicine and life sciences carry on a lively debate about the boundaries and mission of bioethics. They argue over the relative importance of casuistry, transcendent principles, legal reasoning, narratology, feminism, empirical research, etc. Some prominent figures in the profession refuse to label themselves "bioethicists," and the field has yet to settle key questions about accreditation and the content of graduate study. Unfortunately, the diversity of opinion and approaches often fades away in the standard self-representations of the field made to social scientists as well as in the ""bioethics training"" offered to IRB personnel and clinician-scientists.
2. See important recent overviews by Reardon (2001) and Greely (2001), the latter defending the scientific validity of the HGDP and arguing for its revival. The HGDP generated an enormous literature in several genres: internal planning documents, reports of early meetings, activist manifestos and opinion pieces opposing it, responses by HGDP planners and supporters, critiques from other professionals chiefly cultural anthropologists and ethicists), formal statements by bioethics commissions, and review articles about the entire controversy reflecting different disciplines and interests. From the perspective of ioethics in action, however, not all this literature is equally relevant. Reviews appearing long after the controversy died down and formal pronouncements by high-level organizations privilege stable summaries of ethical principles: the final product of earlier debates whose textual traces are more fragmentary and closely tied to immediate contexts. This paper focuses on the latter genre, especially correspondence between critics and defenders of the HGDP on Native-L, an indigenous rights list-serve (accessible at http://www.nativenet.uthscsa.edu). This is the lively and unsettled rhetorical exchange that produced, through many mediations and over several years, the Model Protocol for Group Consent, which exists as a stable artifact of today’’s ready-made bioethics.
3. For details about the WCIP, see http://www.cwis.org/fwdp/international/scipinfo. text; about CONIC, see nativenet.uthsca.edu/archive/nl/9309/0314.html, and about SAIIC,
see saiic.nativeweb.org/brochure.html (accessed March 2002).
4. The final planning workshop (held in Sardinia in September 1993),which established the formal organization of the global HGDP, expanded and restated this list into four "areas of ethical concern." (Human Genome Diversity Committee 1993) (also known as the Alghero Document). These four areas combine straightforward estatements of accepted research ethics with the anti-racist self-image of human population genetics (see Gannett 2001). The first and most detailed area concerns respect for individuals and cultural integrity and the need for informed consent and anonymity. The second area regulates property rights in DNA; it directs any profits from pharmaceutical patents to benefit the sampled population or individual, and it endorses a single database accessible to all scientists. The remaining areas focus on the interpretation and popular uses of the project’s findings, particularly the need to avoid misuse of genetic data to justify racism, xenophobia, and hypernationalism, and to publicize that genetic science does not support conventional notions of race.
5. Around the same time, at least two other organizations also prepared guidelines for ethical conduct in human population genetics research, UNESCO and the international Human Genome Organization (HUGO) (Greely 1997).
6. Gilbert used contemporary terminology in his list. The Jackson Whites now call themselves the Ramapo Mountain people; the Croatans now call themselves the Lumbee and consider themselves Indian (see Blu 1980).
7. See http://www.geocities.com/bourbonstreet/inn/1stunion.htm.
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8. Information which follows about present-day Melungeons comes from
interviews with Brent Kennedy,WayneWinkler, current head of the Melungeon Heritage
Association, and one other individual active in the Melungeon movement for over ten
years, as well as fieldwork at the Fourth Union: A Melungeon Gathering, in Kinsgsport
Tennessee, June 19––23, 2002.
9. In 1999, a group of Melungeons presented their claims to the Tennessee
Commission on Indian Affairs, and they also called upon the broader Native American
community to accept them as legitimate descendents of earlier tribes, even though for
centuries they had hidden or denied their Indian features (Whitaker 1999).
10. See http://www.geocities.com/bourbonstreet/inn/1024/welcome.htm.
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8. Information which follows about present-day Melungeons comes from
interviews with Brent Kennedy,WayneWinkler, current head of the Melungeon Heritage
Association, and one other individual active in the Melungeon movement for over ten
years, as well as fieldwork at the Fourth Union: A Melungeon Gathering, in Kinsgsport
Tennessee, June 19––23, 2002.
9. In 1999, a group of Melungeons presented their claims to the Tennessee
Commission on Indian Affairs, and they also called upon the broader Native American
community to accept them as legitimate descendents of earlier tribes, even though for
centuries they had hidden or denied their Indian features (Whitaker 1999).
10. See http://www.geocities.com/bourbonstreet/inn/1024/welcome.htm.
11. Other candidates for Old World source
populations include Basques,
ancient Carthagenians,
12th CenturyWelsh sailors, shipwrecked Spanish pirates, Sephardic Jews, the
Lost Tribe of Israel, the lost colony of Roanoke, and Turks (Elder 1999).
12. Many people active in Melungeon circles do not agree with Kennedy’s
favored origin theory, but the full scope of the group’s internal politics are beyond the
scope of this paper.
13. Interview conducted June 23, 2002, in Kingsport, Tennessee.
14. Kevin Jones was an invited guest at two meetings of the NIH grant
"Ethnicity, Citizenship, Family: Identity After the Human Genome Project" (grant
5R01-02196) in August 2001 and February 2002.
15. Transcript of public talk, Fourth Union, June 20, 2002.
16. Population geneticists who routinely recruit DNA donors and report the results in popular media have come to anticipate the incommensurability (Sloan Williams, January 2002). Through the use of informed consent protocols and formal ethics evaluation, they design studies in order to minimize potential problems. Anticipating and resolving controversies in this way, however, constitutes the terrain of ready-made bioethics. Kevin Jones, whose work with Melungeons was his first project in human population genetics, and whose college had only recently formed an IRB, illustrates the earlier stage of bioethics in action.
REFERENCES
Barsh, Russel Lawrence
1993 A "New Partnership" for Indigenous Peoples: Can the United Nations
Make a Difference? American Indian Culture and Research Journal 17(1): 197––227.
Beale, Calvin L. 1957 American Tri-racial Isolates: Their Status and Pertinence to Genetic Research. Eugenics Quarterly 4(4): 187––196.
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Victor B. Penchaszadeh, Lawrence O. Gostin, Marta Gwinn, and Muin J. Khoury
2001 Informed Consent for Population-Based Research Involving Genetics.
Journal of the American Medical Association 286(18): 2315––2321.Blu, Karen I.
1980 The Lumbee Problem: The Making of an American Indian People. New York:
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174 P. BRODWIN
Bosk, Charles L. 1992 All God’s Mistakes: Genetic Counseling in a Pediatric Hospital.
Chicago: The University of Chicago Press.
1999 Professional Ethicist Available: Logical, Secular, Friendly. Daedalus
128(4): 47––
68.
Bowman, James E.1999 The Human Genome Diversity Project as a Complement to Human Population Genetics. Politics and the Life Sciences 18(2): 289––290.
Bradman, Neil, and Mark Thomas.
1998 Why Y? The Y Chromosome in the Study of Human Evolution, Migration
and Prehistory. Electronic document, http://www.ucl.ac.uk/tcga/ScienceSpectrapages/SciSpect-14-98.html , accessed May 27, 2002.
Brodwin, Paul 2002 Genetics, Identity, and the Anthropology of Essentialism.
Anthropological Quarterly 75(2): 323––330.
Callahan, Daniel
1999 The Social Sciences and the Task of Bioethics. Daedalus 128(4):
275––294.
Cavalli-Sforza, Luigi L., P. Menozzi, and A. Piazza
1994 The History and Geography of Human Genes. Princeton, NJ: Princeton
University Press.
Cavalli-Sforza, Luigi L., Allan C.Wilson, Charles R. Cantor, Robert M.
Cook-Deegan, and Mary-Claire King
1991 Call for aWorld-Wide Survey of Human Genetic Diversity. Genomics 11(2):
490––491.
Cavender, Anthony P.
1981 The Melungeons of Upper East Tennessee: Persisting Social Identity.
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1993 HGD Project, SAIIC Response. Electronic document, http://www.
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1998 Colonial Encounters in Postcolonial Contexts: Patenting Indigenous DNA
and the Human Genome Diversity Project. Critique of Anthropology 18(2): 205––
A4 233.
DeMarce, Virginia Easley 1992 ""Verry Slitly Mixt"": Tri-Racial Isolate Families of the Upper South——A Genealogical Study. National Genealogical Society Quarterly 80(1): 5––35.
DeMarce, Virginia Easley 1993 Looking at Legends——Lumbee and Melungeon: Applied Genealogy and the Origins of Tri-racial Isolate Settlements. National Genealogical Society Quarterly 81(1): 24––45. DeVries, Raymond, and Janardan Subedi,eds.
1998 Bioethics and Society: Constructing the Ethical Enterprise. Upper
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2002 Identity and Genetic Ancestry Tracing. British Medical Journal 325:
1469––
1471.
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BIOETHICS IN ACTION 175
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ancient Carthagenians,
12th CenturyWelsh sailors, shipwrecked Spanish pirates, Sephardic Jews, the
Lost Tribe of Israel, the lost colony of Roanoke, and Turks (Elder 1999).
12. Many people active in Melungeon circles do not agree with Kennedy’s
favored origin theory, but the full scope of the group’s internal politics are beyond the
scope of this paper.
13. Interview conducted June 23, 2002, in Kingsport, Tennessee.
14. Kevin Jones was an invited guest at two meetings of the NIH grant
"Ethnicity, Citizenship, Family: Identity After the Human Genome Project" (grant
5R01-02196) in August 2001 and February 2002.
15. Transcript of public talk, Fourth Union, June 20, 2002.
16. Population geneticists who routinely recruit DNA donors and report the results in popular media have come to anticipate the incommensurability (Sloan Williams, January 2002). Through the use of informed consent protocols and formal ethics evaluation, they design studies in order to minimize potential problems. Anticipating and resolving controversies in this way, however, constitutes the terrain of ready-made bioethics. Kevin Jones, whose work with Melungeons was his first project in human population genetics, and whose college had only recently formed an IRB, illustrates the earlier stage of bioethics in action.
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1993 A "New Partnership" for Indigenous Peoples: Can the United Nations
Make a Difference? American Indian Culture and Research Journal 17(1): 197––227.
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1998 Why Y? The Y Chromosome in the Study of Human Evolution, Migration
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Callahan, Daniel
1999 The Social Sciences and the Task of Bioethics. Daedalus 128(4):
275––294.
Cavalli-Sforza, Luigi L., P. Menozzi, and A. Piazza
1994 The History and Geography of Human Genes. Princeton, NJ: Princeton
University Press.
Cavalli-Sforza, Luigi L., Allan C.Wilson, Charles R. Cantor, Robert M.
Cook-Deegan, and Mary-Claire King
1991 Call for aWorld-Wide Survey of Human Genetic Diversity. Genomics 11(2):
490––491.
Cavender, Anthony P.
1981 The Melungeons of Upper East Tennessee: Persisting Social Identity.
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1993 HGD Project, SAIIC Response. Electronic document, http://www.
nativenet.uthscsa.edu/archive/nl/9311/0069.html, accessed January 26, 2002.
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1997 Evaluating Human Genetic Diversity. Washington, DC: The National
Academies Press.
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1998 Colonial Encounters in Postcolonial Contexts: Patenting Indigenous DNA
and the Human Genome Diversity Project. Critique of Anthropology 18(2): 205––
A4 233.
DeMarce, Virginia Easley 1992 ""Verry Slitly Mixt"": Tri-Racial Isolate Families of the Upper South——A Genealogical Study. National Genealogical Society Quarterly 80(1): 5––35.
DeMarce, Virginia Easley 1993 Looking at Legends——Lumbee and Melungeon: Applied Genealogy and the Origins of Tri-racial Isolate Settlements. National Genealogical Society Quarterly 81(1): 24––45. DeVries, Raymond, and Janardan Subedi,eds.
1998 Bioethics and Society: Constructing the Ethical Enterprise. Upper
Saddle River, NJ: Prentice Hall.
Elder, Pat Spurlock
1999 Melungeons: Examining an Appalachian Legend. Blountville, TN:
Continuity Press.
Elliott, Carl, and Paul Brodwin
2002 Identity and Genetic Ancestry Tracing. British Medical Journal 325:
1469––
1471.
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sjny-medi-ny00007423 medi2004.cls (03/22/2004 v1.1 LaTeX2e MEDI document
class) August 9, 2005 20:14
BIOETHICS IN ACTION 175
Evans, John Hyde
2002 Playing God? Human Genetic Engineering and the Rationalization of
Public
Bioethical Debate. Chicago: University of Chicago Press.
Everett, C.S. 1999 Melungeon History and Myth. Appalachian Journal 26(4): 358––409.
Foster, Morris W., Deborah Bernsten, and Thomas H. Carter
1998 A Model Agreement for Genetic Research in Socially Identifiable
Populations.
American Journal of Human Genetics 63: 696––702. Fox, Daniel M.
1993 View the Second. Hastings Center Report 23(6): S12––S13.
Gannett, Lisa
2001 Racism and Human Genome Diversity Research: The Ethical Limits of
"Population Thinking." Philosophy of Science 68(3): S479––S492.
Gilbert, William Harlen 1946 Memorandum Concerning the Characteristics of the Larger Mixed-Blood Racial Islands of the Eastern United States. Social Forces 24: 438––447.
Gillespie, John H.1998 Population Genetics: A Concise Guide. Baltimore, MD: The Johns Hopkins University Press.
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1995 Papua New Guinea, the Human Genome Diversity Project. Electronic
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http://www.nativenet.uthscsa.edu/archive/nl/9510.0225.html, accessed January
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Dr. Paul Brodwin
Department of Anthropology
University of Wisconsin-Milwaukee
P.O. Box 413, Milwaukee
WI 53201, USA
Department of Anthropology
University of Wisconsin-Milwaukee
P.O. Box 413, Milwaukee
WI 53201, USA
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