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2001 by The Wenner-Gren Foundation for Anthropological Research. All rights reserved 0011-3204/2001/4202-0003$3.00
In the past several decades there has been an explosion of research in genetics and on genetic inheritance. This new genetics
is part of contemporary biomedicine and forecasts great advances
in alleviating disease and prolonging human life. It also encompasses notions about biological family and kinship relations. I
propose that with the advent of the new genetics, family and
kinship are being medicalized. I explore the ways in which explanations of the inheritance of genetic disease influence peoples
understandings of family and kin and both reflect and conflict
with broader current sociocultural processes. The discussion includes a brief overview of the anthropological study of kinship,
the meaning of family and kinship in contemporary society, and
the concept of medicalization and its implications for peoples
lives as seen through narratives and concludes with an analysis
of the significance of the medicalization of family and kinship in
present-day society.
k a j a f i n k l e r is Professor of Anthropology at the University
of North Carolina, Chapel Hill (Chapel Hill, N.C. 27514, U.S.A.
[kxf9438@email.unc.edu]). She has taught at Eastern Michigan
University (197384) and has been a visiting scholar at the National Autonomous University of Mexico, the University of
Newcastle, and the University of Freiburg. Her publications include Spiritualist Healers in Mexico (Salem, Wis.: Sheffield,
1994), Women in Pain (Philadelphia: University of Pennsylvania
Press, 1994), Experiencing the New Genetics (Philadelphia: University of Pennsylvania Press, 2000), and Physicians at Work, Patients in Pain (Boulder: Westview Press, 2d edition, 2001). The
present paper was submitted 11 i 00 and accepted 21 viii 00.
1. I thank the four informants whose narratives enrich our understanding of the phenomena discussed in this paper for freely giving
me their time and receiving me with patience. I owe a special debt
to Cecile Skrzynia of the Division of Hematology and Oncology of
the School of Medicine at the University of North Carolina, Chapel
Hill, for introducing me to Eve and Maya (pseudonyms). I thank
Robin Miller for introducing me to the adoptees and Lynn Giddens
for assisting me in meeting Kristen and Eric (pseudonyms) and sharing with me the wealth of her experience as an advocate for adoptees. The entire project was supported by a fellowship from the
Institute of Arts and Humanities, University of North Carolina,
Chapel Hill, and by grants from the University of North Carolina
Research Council and from the University of North Carolina Graduate School. I especially thank Rick Ezell for giving the manuscript
a close reading and for his invaluable demand for clarity.
The past several decades have seen an explosion of research in genetics and on genetic inheritance.2 The new
genetics is part of contemporary biomedicine and promises great advances in alleviating disease and prolonging
human life, leading us into the medicine of the future.
The present perspective on genetic inheritance is a feature of the past four decades, although the hereditarian
concept of disease appeared in the mid-19th century (Rosenberg 1976, Strahan 1984[1902]), when the Darwinian
revolution of the 19th century and the Mendelian principles introduced in the early 20th gave rise to the discovery of the genetic assortment of individual traits
transmitted from generation to generation. The notion
of genetic inheritance as we know it today came into
existence in the mid-20th century with the blossoming
of molecular biology. As genetic inheritance increasingly
becomes the prevailing causal explanation of affliction
and of human behavior in general, it is appropriate to
ask how such explanations influence peoples understandings of family and kin and how they reflect and at
the same time conflict with broader social processes.
To address these issues, I will briefly describe anthropological debates about the meaning of kinship from
cross-cultural and historical perspectives and then examine current conceptualizations of family and kinship.
I will go on to discuss what I call the medicalization of
family and kinship, pointing out that this phenomenon
impacts individuals differently, depending on their experience, and illustrating this with narratives of healthy
individuals with a family history of breast cancer and
healthy adoptees who have searched for their birth parents. I will conclude with a discussion of the theoretical
and practical implications of the medicalization of family and kin. On the assumption that medical concepts
open a window to the understanding of a societys culture, I will suggest that contemporary conceptualizations
of hereditary transmission build on American cultural
conceptions of kinship and that the medicalization of
kinship reflects and promotes a traditional notion of family and kinship relations that is counter to the changing
patterns of the late 20th century and the new millennium.
2. The mass media are saturated with reports of this work. Television series such as Turning Point and Dateline feature issues
related to genetic inheritance. National Public Radios Fresh Air,
Morning Edition, and Talk of the Nation Science Friday have presented recent developments in genetic inheritance, as have the New
York Times (Jones 2000) and a multitude of other publications and
programs. All Things Considered on National Public Radio has
discussed the usefulness of mastectomies to save lives for women
whove seen their mothers or sisters die an early death from breast
cancer. While some reports question the new emphasis on genetic
inheritance, including Siebert (1995), Begley (1996, 1997), The Economist (1996), Marty (1996), and Turning Point (February 12, 1996),
the majority of these reports are enthusiastic about the achievements of the new genetics (Blakeslee 1997; Carey and Flynn 1997;
Elmer-Dewitt 1994; Freundlich 1997; Grady 1994; Jaroff 1989, 1994,
1996; Seligman 1994; Wade 1997; Glausiusz 1995a, b, 1996; Higgins
1997; Brownlee and Silberner 1991; Brownlee et al. 1994; Nash
1997; Sack 1997).
235
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nical diagnostic procedures, to take such a history (McAuliffe 1978, 1979). Thus, to resist the medicalization of
family and kinship one would have to reject biomedical
treatment.
The medicalization of family and kinship reverberates
in the mass media. A program presented on CNNs Your
Money on February 15, 1997, instructed viewers to track
down their family histories to acquire useful hereditary
information. The Chattanooga Times (December 12,
1996) reports that people are searching vigorously for
family trees to learn their ancestors causes of death to
clue them in on genetic diseases. Finch (1996:92) reports in Health that tracing your roots to learn your
familys health history may be the single most important
thing you ever do to bolster your well-being and instructs the reader on how to go about doing a family tree.
Daus (1999) shows how tracing your family medical
history can save your life (see also Adato 1995). Some
articles focus on adoptees seeking access to their genetic
history (Park 1997, Cool 1994) and advocate open adoptions and open medical records. A headline in the August
15, 1996, Wall Street Journal calls attention to One
Familys Search for a Faulty Gene, and another on the
same page announces that Doctors Recommend Every
Family Make Its Own Medical Tree (see Nelkin 1992).
Family magazines suggest that individuals work out genograms and family health pedigrees as a way of predicting
the future of their children. Some Mothers Day cards
remind the mother that its all in our genes (Siebert
1995).
References to peoples predisposition to inherited disease are made frequently on talk shows and in the print
media. Siebert (1995:74) writes, Genes are suddenly
thought to be responsible for everything from poverty to
privilege, from misdemeanors to murder. I seem to recall
watching television one night and seeing a man up on
homicide charges offer as a defense the presence of a
criminal gene, which he claimed ran in his family. He
reports that the Institute of Medicines Committee on
Assessing Genetic Risks recently concluded that multiplex genetic testing based upon a single blood or tissue
sample will become standard medical practice early in
the next century. Clearly, the day is not far off when a
doctors visit will yield personal genetic report cards,
indicating which disorders we may be destined for and
how to tailor our lives accordingly (p. 52).
The notion of the medicalization of family and kinship
would tend to predict such current phenomena as the
recent law enacted in Oregon that requires open adoption, meaning that adoptees can learn the names of their
birth parents and gain access to their medical records
without the need to resort to the courts.13 Not coincidentally, too, the search movement among adoptees
came into bloom in the 1960s, around the same time
13. The Oregon Adoptee Rights Initiative, passed by a vote of the
people of Oregon on November 3, 1998, restores the right of adopted
adults (age 21 and older) to request and receive a copy of their
original birth certificates with no amendments, no restrictions, and
no exceptions (see http://www.barysoftware.com/orelegl.htm).
that our collective consciousness concerning genetic inheritance came to the fore and notions about diseases as
genetically programmed began to take root in biomedicine. Moreover, the current intense interest in genealogies (see, e.g., Hornblower 1999, Mitchell 1999) is arguably connected with the necessity to provide the
family trees that are the basic technique of the clinical
geneticists (Richards 1996).
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Eve noted that she felt closer to her sister and husband
and her father but had also become closer to her cousins:
Knowing that they share the same genes provides
the occasion for discussion. When I think I know
something thats useful, I pass it on to the others. So
basically the occasion for my cousins is a bar mitzvah we might all go to, but we are connected
through this exchange of information. Otherwise,
we have very different lives. The fact that they have
the same genes has created a close bond. We seem
to have a very clear and good and accepting understanding of who the family was. Let me just say that
this [disease] really has provided a lasting and a continuous bond.
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endometriosis, and her doctor wished to perform a hysterectomy, but the company would not authorize the
procedure. She maintained that had she had a medical
history she would have received the procedure immediately.15 Furthermore, she observed that it was very important to have a family medical history so that she
would know what she was passing on to her children.
She said, You dont know what I could have given them
that would hurt them.
Kristen had contacted the agency that had handled her
adoption to advise them of her Raynauds condition and
to request her medical history. The staff member who
found her file said, Well, do you know that your maternal grandmother died of lupus? Kristen continued,
And I was like, what? whoa, wait a minute, youre sitting on this information, you never told me. I got very
upset.When she told her doctor that she was adopted
and that her maternal grandmother had suffered from
lupus, the doctor got real quiet, and said, You need to
find your family. You need to be getting physical documents about your family history. The doctor also told
her that there is a strong maternal genetic link between
Raynauds disease and lupus. All on the same branch
of diseases, said Kristen. After I found out I was like
a demon. I was not only dealing with my childrens
health, my curiosity, but I was dealing with my health.
She was on a one-year recall visit schedule for blood tests
for lupus because of the information she had gathered
about her genetic background.
Having found her birth mother, Kristen had learned
that her maternal grandfather had died of a heart attack
when he was 34 years old. She commented,
When I found my birth mother, shes opened her entire life to me, her medical records, my grandmothers medical records, my great-grandmother,
whos 93 and still alive, had gotten her doctor to get
up stuff for me. And my great-aunt Lois has done
the same. And the whole family is riddled with arthritis, my grandmother died of lupus, my mother
has connective-tissue muscle disorder, and so I was
able to call my doctor back and say, This is what
Ive got in my background. And the doctor started
laughing, saying, God, no wonder youre gonna test
positive for lupus, youre always gonna test positive
for lupus.
The doctor, a rheumatologist, told Kristen that with her
background and genetic makeup, Youre asking for a lot
of problems. The doctor told her that she would become
afflicted with arthritis later on and that the Raynauds
disease would get worse. Kristen continued, I was
started on medication for that. I was also told, You will
have to watch yourself, because of the genetic background there. She was convinced that she had inherited
15. According to the head of an adoption search chapter, if an adoptee lacks a medical history the doctor will often refuse to order
various procedures because the insurance companies claim a lack
of documentation to justify them.
all these disorders from her birth mother, and she had
become a perpetual patient.
She lamented that she had not learned sooner that she
originated from a family with lupus, because it would
have explained her circulatory problems, such as her cold
fingers and toes, especially in wintertime. Had she
known that this condition was part of her family heritage, she said, she would have been assured sooner that
she was not crazy; the doctors had not taken her symptoms seriously until she was able to show that others in
her family had suffered from the disorder. The medical
history not only recounted for Kristen her family history
but also, significantly, affirmed her sanity. She had also
discovered that she had a half-sister with cerebral palsy,
and she wished that she had known that before she had
children. She observed, I would have at least been tested
when I was pregnant. It wouldnt have changed anything,
but I would have been prepared emotionally.
Kristens biomedical understanding of genetic inheritance required her to be on an annual recall schedule of
medical visits and to take certain medications. More important, her medical history linked her with those who
shared her genetic heritage rather than with those who
had raised and educated her. Her emphasis on medical
history anchored her identity in her patienthood and also
tied her to a world of relatives in the past. For Kristen,
as for the other adoptees, kinship meant biological connectionvalidated by the medical history that firmly
established her continuity with the past and presentwith her birth mother and her family. The medical
history, by recapitulating genetic inheritance, turned
into a kinship history and a mental map of the past.
Importantly, too, having her biological familys medical
history affirmed her sanity for Kristen. Only when she
could demonstrate a genetic history did her doctors take
her symptoms seriously and acknowledge that her ills
were not in her head.16
Eric was 51 years old, married with two children, a
college graduate, and employed in a managerial position.17 He had begun the search for his birth mother eight
months prior to our meeting, shortly after the death of
both his adoptive parents, to whom he had felt very close.
I found Erics narrative especially poignant because,
sadly for him, the woman he was certain was his birth
mother had not responded to his several letters of introduction. He wanted to meet her primarily because he
wished to obtain his medical history so that he might
16. It is especially common for women to be told that their symptoms are in their heads if their condition cannot be assessed
biomedically (see Finkler 1994).
17. The ratio of women to men seeking their birth parents is 9:1
(head of the search support group, personal communication). The
reasons for the disparity are not clear. The head of the support group
attributes it to the fact that women are more sensitive to birth
and pregnancy issues than men and mens lesser abilities to connect to the birth process. There may be other reasons, including
the fact that since women seek treatment more often than men
(Finkler 1994, Verbrugge 1990) they are more exposed to medicalization. This interesting disparity requires further exploration, but
with the ongoing medicalization of family and kinship it is likely
to disappear.
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here and abroad (Hoedemaekers and ten Have 1999) recognize that predisposition does not necessarily lead to
disease.19 The concept of the inheritance of a predisposition extends the medicalization of family and kinship
to encompass almost everyone, converting most people
into potential perpetual patients. Peoples realities will
encompass a future that is incessantly punctuated by
worry. Indeed, the medicalization of family and kinship
alters peoples perceptions from if I get breast or colon
cancer to when I get breast or colon cancer or any
one of the many diseases believed to be inherited.
Moreover, the medicalization of family and kinship
creates a new dynamic within the family. Some have
suggested that it may lead to guilt for parents and resentment for their offspring (Serban 1989, Richards
1996). Healthy members of a family or kin group may
resent being told that they are potentially at high risk
for developing a disease (Green, Murton, and Statham
1993). Lynch, Lynch, and Lynch (1979:223) found that
family members manifest anxiety, fatalism, denial and
even accusation directed toward the spouse, parents, or
other family members who have caused the disease among us. But Wexler (1979:207), discussing
Huntingtons disease,20 observes that remarkably few
interviewees expressed conscious anger toward the parent who had given them this legacy. Compassion and
grief were by far the most common feelings. It was considered in particularly bad taste to harbor hostility toward a parent who was already broken and ill. Wexler
(1992) was surprised, as was I (Finkler 2000a), that people
failed to express anger with their families for having
passed down a lethal disease.
Most important, with the medicalization of kinship
the individual is no longer the sole patient. We read that
genetic counselors are beginning to ask questions such
as who is the patientthe individual? The familythe
spouse, the sister, the brother, or the child? (Nelkin
1992:180). In contrast to the broader societal process, in
which individualism and freedom of choice are emphasized, the medicalization of kinship creates a tension
between individualism and choice and an orientation to
family and kin. As I noted earlier, individualism insists
on an autonomous person, standing outside any one socially defined unit and selecting his/her life course,
whereas kinship relationships based on genetic inheritance call for connectedness and circumscription of
choice. If Edwards and Strathern (2000) are right, forgetfulness plays an important role in delineating kin beyond
the nuclear family. But the medicalization of family and
kinship unites people wittingly or perhaps unwittingly
and jolts their memories. Whereas in modern society
individuals may choose their kin on the basis of affective
ties, paradoxically, the new genetics prescribes ones kin
19. See, e.g., the work of Lisbeth Sachs in Sweden (1995, 1996) and
Adelsward and Sachss (1996) work on the ways in which biomedicines assignment of numerical values to risk creates in people a
state of being neither healthy nor diseased.
20. Huntingtons disease is caused by a single dominant gene, and
the odds are 5050 that the individual will inherit the disease,
which becomes manifest at 3540.
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ilies with a history of cancer, the concept of genetic inheritance at once created fear of the future and provided
some meaning for their fears and potential suffering,
sometimes even moving them to action to avoid becoming ill. These women tended to believe that, knowing
their predisposition to inheritance of a disorder, they
could do something, if only by avoiding identified risk
factors, to prevent the inevitable.25 For the adoptees,
in contrast, the medicalization of family and kin produced fragmentation, internal conflict, and turmoil, creating special dilemmas that do not affect individuals who
have been raised by blood kin. Adoptees were impelled
to search for their birth parents by the very consciousness of genetic inheritance and in large part by the need
for a family medical history, and they came to question
the fiction of living as if they were related by blood to
their adoptive families. The power of the medicalization
of family and kinship, pitted against their experience of
love and solidarity within their adoptive families, had
led them to search for their birth parents, placing them
in profound contradiction. Most of the adoptees I studied
had difficulty reconciling the belief in genetic inheritance with their experience of being a member of an
adopted family, frequently a loving one, with whom they
lacked blood ties and whom they did not resemble physically. What is more, it is significant, if also puzzling,
that the adoptees who had found their birth parents had
taken on new personas, created a past with new ancestors, and become transformed by their newly formed
relationships.
Curiously, in contrast to patients or potential patients,
who sometimes found answers to basic existential questions associated with their affliction, the adoptees tended
not to discover answers for their issues of abandonment
and rejectionthe question Why was I given away?
that may have been the deepest reason for searching for
their biological families. Their cultural comprehension
of kinship in biological terms did, however, allow them
to attempt to deal with these issues by reestablishing
contact with their birth parents and creating histories,
if only medical ones. By becoming reunited with their
birth families, the fragmented adoptees, torn between
cultural ideologies and lived experience, became, in the
words of many, whole, arguably masking the fragmentation people may feel more generally in contemporary capitalist society. But at the same time they confronted new issues and conflict that tore them apart.
Bartholet (1993:166) argues that in American society biological origins are central to our destiny and that it
is only genetically linked parents who are truly entitled
to possess their children and to whom children truly
belong (p. 167). Along with others (e.g., Andersen 1993)
25. Of course, the medicalization of family and kinship may also
reassure healthy people that they come from healthy stock. People
may take pride in the fact that their ancestors gave them positive
features such as blue eyes or lanky bodies. Although these may be
offset by unfavorable characteristics such as heavy thighs or other
deprecated physical attributes, these attributes do not draw the
individual into the medical domain in the same way as conceptualizations of genetic inheritance of disease.
she observes that the assumption of the search movement is that adoptees must forever suffer the loss of
their birth parents and the related loss of genetic continuity with the past and that they are prone to genealogical bewilderment as they struggle to live a life
cut off from their genetic origins (p. 172). In short, in
this literature adoptees are in pursuit of a genetic inheritance that is taken to be equivalent to their true
family, their significant same. According to Bartholet,
adoptees suffer when they are cut off from their biological links and generational continuity is destroyed. She
observes that sperm donors, their offspring, and birth
mothers in surrogacy arrangements increasingly voice
complaints of the pain they suffer from being cut off from
genetic forebears or descendants (pp. 22728),26 although she rightly claims that parenting cannot be
equated with procreation. She wisely observes that a
sense of immortality comes not from passing on ones
genes but from the parental relationship and how it
shapes the child. She concludes, All adoptions require
parents to transcend the conditioning that defines parenthood in terms of procreation and genetic connection
(p. 113).27
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have shown that scientific knowledge, including biomedical knowledge, is socially produced. She makes a
compelling case that genetic knowledge is constructed
when she demonstrates that in the late 1980s the view
of cancer changed from a set of heterogeneous diseases
marked by the common property of uncontrolled cell
growth to a disease of human genes (p. 1). This change
was brought about not by new discoveries or new epistemic advances but by negotiated social processes (Latour 1987). Haraway (1991:184), in a more critical mode,
describes the social constructionist approach best when
she states that no insiders perspective is privileged,
because all drawings of inside-outside boundaries in
knowledge are theorized as power moves, not moves towards truth.
In keeping with these scholars perspective, we have
come to acknowledge that biomedicine is a cultural system (Hahn and Kleinman 1983, Finkler 1991, Ingleby
1982, Krieger and Fee 1994, Lock 1980, Lock and Gordon
1988, Martin 1997, Wright and Treacher 1982, Young
1981)28 and that, like science itself (Brandt 1997, Fujimura 1996, Haraway 1991, Hess 1997, Latour and Woolgar 1979, Martin 1997, Richter 1972, and, on genetics,
Bowler 1989), is an intellectual endeavour that has
emerged at a particular historical moment in the social
formation of Western society. Like all other knowledge
systems, biomedicine is socially and culturally constructed, reflecting the themes of the society and culture
of which it is part while imposing these themes on cultural conceptualizations. For example, biomedicines
model of the human body as a standardized machine and
illness as the breaking down of its component parts (Berliner 1975, Martin 1987, Osherson and Amara Singham
1981, Turner 1992) mirrors the predominance of technology and machines in modern society while at the
same time imprinting on peoples consciousness a mechanistic view of themselves.29 An extensive body of literature shows persuasively how medical concepts are
socially constructed (Finkler 1991; Wright and Treacher
1982; Turner 1987, 1992), reflecting broader cultural
themes including gender differences (Johnson 1987, Martin 1997, Petchesky 1987, Ritenbaugh 1982, Rodin 1992,
Yanagisako and Collier 1990). Current hereditarian concepts are not, however, confined to any one gender (see
Granner 1988, Nelkin 1992, Nelkin and Lindee 1995).30
Recognizing the contingent nature of biomedical conceptualizations, even the most ardent critic of genetic
determinism will acknowledge the incontrovertible evidence that a handful of diseases are inherited (Hubbard
28. And see Fleck (1979[1935]:35), who, prior to most contemporary
scholars, said, In science, just as in art and in life, only that which
is true to culture is true to nature.
29. See especially Douglas (1992[1970]) on how our comprehension
of the body reflects broader societal themes.
30. My study dealt with women with family histories of breast
cancer, but my argument applies equally to men and women and
to the numerous diseases currently construed as hereditary. (I hasten to add that specific diseases may also have other consequences
not encountered among women with breast cancer.) The full impact
of the medicalization of family and kinship must continue to be
an empirical question.
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by a sense of sameness that may be grounded in friendship or sharing of affect and interest rather than in genes.
With the belief in genetic inheritance and the medicalization of kinship, interaction with family and kin may
no longer be required for people to recognize relatedness
and connection.
In the past, peoples existence was embedded in family
and kinship relations. A human being was defined as a
social person, inheriting from family status, power,
goods, blood, and honor. Normally, families bequeathed
to their offspring everything that was positive and negative in human existence. At present, family and kinship
relations may be defined more by the inheritance of disorders and pain than by the inheritance of status and
social attributes. Peoples kinship is sustained by the
DNA that mediates memory of their ancestors by the
relentless transmission from generation to generation of
its encoded material. DNA, as our proxy, records and
remembers our ancestors better than our fragile memories do. It establishes continuity with the dead, a continuity of particles that lack the moral responsibilities
associated with relatedness.
Memories are usually embedded in sounds, smells, affect, and tales of past ancestors and kinship ties. But we
recall our ancestors not for these characteristics or for
their achievements, for their beliefs, for the numerous
dimensions of their being, for their quirks, but for their
physicality.31 Although through DNA we establish continuity with the dead, it is a continuity comprised of
hollow particles that may lack any of the affect that is
normally associated with memories. Even if people wish
to forget their antecedents and reinvent themselves, the
physician will remind them of their true biological
ancestors. The family medical history is part of the persons identity and memory. Within the biomedical domain, the medical history and biological antecedents determine personhood, and knowing ones genetic ties is
sometimes raised to a spiritual state, a transcendent experience (Finkler 2000a).32
Yet, phenomenologically there is a distinction between experiencing oneself as a member of a significant
same group that feels a sense of solidarity and relatedness associated with shared experiences from the beginning of life and experiencing oneself as a member of
a family, or group, that shares DNA molecules. Once
adoptees find their birth mothers and medical histories,
they tend to create new fictions for themselves by establishing presumably loving relationships with those
people. And while they may, as most of the people I
interviewed reported, find a new wholeness, experi31. However, in the 19th century certain diseases were considered
prestigious; tuberculosis, for example, served as a metaphor for an
artistic personality (see Sontag 1978). Hemophilia may have been
a mark of nobility, and obesity was a mark of wealth. Sickle-cell
anemia is an indicator of race associated with African-American
descent (see Wailoo 1996).
32. In a lecture entitled Genetics and Faith, Francis Collins
(1999b), head of the Human Genome Project, has advanced the
notion that there is no conflict between religion and genetics and
that uncovering the genome is a religious experience.
entially it masks a sense of fragmentation as they continue to exist between two worlds: one rooted in the
fiction of as if by blood and the other in shared experience and affective ties.
The notion of shared experience suggests being in the
world and interacting with others, whereas being part of
the same DNA circle requires no social interaction. Bauman (1992:42) points out what Merleau-Ponty knew, that
the only way we can comprehend ourselves and know
that we are alive is by being with others and being anchored in a moral order. Levinas observes that humans
are beings with meaning and that meaning comes out of
our responsibility for others; being reduced to the is
without the ought equals solitude (quoted by Bauman
1992:42). As I have argued elsewhere (Finkler 1994), to
be human is to be a moral being, to insist on the ought
and the should against all odds, and the sense of responsibility to others that arises out of the ought is
initially experienced in ones significant same group.
To sense that one is part of a family chiefly because one
shares the same genes, requiring no social participation
or sense of responsibility to those who are related except
to provide blood samples for testing purposes, removes
the moral context of family relations and being in the
world. Relations between family and kin, however defined, are governed by a special morality arising out of
the recognition of commonality (Finch and Mason 1993,
Freeman 1968, Witherspoon 1975), whereas relations established on the basis of the new genetics lack moral
imperatives.
Paradoxically, genes are both amoral and moral. On
the one hand, people do not hold their ancestors responsible for transmitting faulty genes. On the other hand,
the medicalization of family and kinship gives meaning
to the randomness inherent in geneticsto the luck of
the drawby supplying a reason for suffering and thus
making it more bearable. Belief in genetic inheritance
carries a moral load in that it may even bring people
back to the religious notion of original sin and the sins
of the fathers, embodying the notion of predestination
(see Finkler 2000a). Ironically, the contemporary solitary,
independent, and autonomous individual becomes
united with genetic family and kin by sharing asocial
and amoral DNA. Bauman (1992:198) correctly observes
that the sociality of the postmodern community does
not require sociability. Its togetherness does not require
interaction. Its unity does not require integration. Thus,
the individual can enjoy traditional kinship and family
relations without moral obligation, responsibility, or sociability. At the same time, medicalization expands the
recognition of family and kin and gives them new importance for the individual that they may have lacked
before. Paradoxically, molecular biology and the genetic
model of family and kinship bridge the essentialism of
modern science with postmodern ideologies and experience. It could even be said that the ideology of genetic
inheritance promises contemporary humans immortality within the flux of the postmodern world. The individual exists in a transient world but is fastened biolog-
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Comments
janet dolgin
Hofstra Law School, Hempstead, N.Y. 11550, U.S.A.
(lawjld@mail1.hofstra.edu). 14 xi 00
Many aspects of Finklers insightful analysis in The Kin
in the Gene, as well as in her recent book Experiencing
the New Genetics (2000a), deserve praise and scholarly
notice. This brief note, however, comments on only one
issue.
Finkler suggests that the new genetics and the attendant ideology of genetic inheritance usher in an unprecedented notion of patient. She explains that with the
medicalization of kinship the individual is no longer the
sole patient and that genetic counselors are beginning
to ask questions such as who is the patientthe individual? The familythe spouse, the sister, the brother,
or the child? (Nelkin 1992:180) and suggests that the
medicine of the future will be the medicine not of the
individual but of the family. Some implications of this
insight are evident in a set of legal and institutional responses to the use of genetic information, especially in
familial contexts. The most remarkable of these is a
court case decided by a New Jersey appellate court in
1996. That case, Safer v. Pack,1 was initiated by Donna
Safer, who was diagnosed with a hereditary form of colon
cancer at age 36. Twenty-six years earlier Donnas father,
Robert Batkin, had died of the same illness.2 Donna sued
Dr. George Pack, who had treated Batkin during his final
illness.3 Donna and her husband, Robert Safer, argued
that Dr. Pack had had a duty to warn those at risk (including Donna) that his patients condition was hereditary so that they might have the benefits of early examination, monitoring, detection and treatment.4 The
court agreed. Judge Kestin, who wrote the courts decision, defined a broad duty to warn: It is appropriate . . .
that the duty be seen as owed not only to the patient
himself but that it also extends beyond the interests of
a patient to members of the immediate family of the
patient who may be adversely affected by a breach of
that duty.5
1. Safer v. Pack, 677 A.2d 1188 (N.J. Super. Ct. App. Div. 1996).
2. Robert Batkin was diagnosed with adenocarcinoma. A pathology
report prepared in 1956, after Robert Batkin first underwent surgery
for colon cancer, noted the existence of diffuse intestinal polyposis.
The condition is hereditary. I am grateful to Gary Maher, attorney
for Donna Safer and her husband, Robert Safer, for sending the
Safers complaint to the Hofstra Law Library.
3. Dr. Pack had died in 1969. Thus, the suit was actually commenced against George Packs estate (677 A.2d at 1190).
4. 677 A.2d at 1190.
5. 677 A.2d at 1992, citing Schroder v. Perkel, 432 A.2d 843 (N.J.
1981). Soon after the decision in Safer, the New Jersey legislature
rejected the opinions more far-reaching implications. The state
legislature provided that health-care workers are permitted to warn
relatives of patients suffering from genetic disorders only if the
patient has either consented to the revelation or died (Genetic Privacy Act, N.J. Stat. Ann., Sec. 17B:30-12 [West 1998]).
sarah franklin
Department of Sociology, Lancaster University,
Lancaster LA1 4YL, U.K. (s.franklin@lancaster.ac.uk).
3 xii 00
Finklers contribution to the literature on kinship in the
context of the new genetics makes a far-reaching and
original claim about the extent to which the gene acts
as an asocial repository of kin ties and indeed helps to
restore them, paradoxically, because the DNA records
and remembers our ancestors better than our fragile
memories do. Moreover, while she notes that negative
effects of geneticization include the perpetual patient
situation of a healthy person predisposed to an illnessyet-to-be, she contrasts this aspect of geneticization with
some of its more positive aspects, such as bringing people
closer together through both practical aspects of collecting and sharing genetic information and a sense of
solidarity in confronting actual or possible genetic ill6. The Society limited this right to cases in which the patient had
first been encouraged to inform identifiable at risk relatives but
had failed to do so, the harm is likely to occur and is serious and
foreseeable, and the harm that may result from failure to disclose is deemed to outweigh the harm that may result from disclosure (ASHG 1998:474).
7. The implications of this brief comment are considered in greater
depth in my article Personhood, Discrimination, and the New
Genetics (n.d.).
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case of the grip that biogenetic models have on the (Anglo-European) grasp of specific social relations, thoughtprovoking in that the material it presents exemplifies
practices that seem specifically North American and
thus invite cross-cultural comparison.
Finkler posits that the medicalization of kin and family relationships at once concurs with an American
model of biogenetic kinship and serves to link people
who might otherwise have no wish (or need) to be connected, thus defying an ideology of individual free
choice. Leaving aside the problematic notion of American, Finklers empirical findingthat people hold contradictory values and draw on them variouslymirrors
social realties more generally. Indeed, the contrary would
be exceptional. Of greater interest are the ways in which
such contradictory values are articulated and practiced.
Research among the involuntarily childless in Norway
and their practices of assisted conception (be it through
new reproductive technologies or by transnational adoption) indicates that people hold both cultural and biological models and shift between them according to context. Although this tension between indigenous models
of nature and nurture runs through much of Norwegian
society, there is no doubt that biogenetic models are gaining ground. This is, for instance, reflected in laws pertaining to the rights of adopted children to know their
biological origins and the renewed debates on artificial
donor insemination, where there is a movement to repeal
the current law of donor anonymity. In both cases the
arguments are grounded in notions of knowing ones
identity, and identity is unproblematically assumed to
be the same as biogenetic origins. However, laws based
on such knowledge do not deter people from adopting
children from abroad. Local ideas of identity are more
complex; origins and belonging are not necessarily perceived as the same thing.
Issues of identity are also immanent in Finklers discussion of medical histories. Finkler states that the family medical history is part of the persons identity and
memory. It is through the need to establish medical
histories that people begin their quest for unknown kin.
This need, moreover, is irrespective of whether one is ill
or not; it is the possibility of becoming ill that is a driving
force. Medical histories, if they can be established, give
one a semblance of control over the future by unraveling
particular facts about the past. Thus they are more than
just a record of individual health cycles; they are a mnemonic device structuring individual perceptions of significant relationships. DNA is the key that unlocks
memory, inscribing ancestry into (or onto) related bodies
in the present and future. DNA is not only a matter of
time; viewed as a fact (devoid of morality), it contradicts
the values people attach to it.
Medical histories surface as documents certifying who
one is. Yet, the necessity of possessing one seems to rest
on the demands of health insurance companies, and thus
the family medical history is a type of identity document
that not only has personal valuein the sense of giving
a person a sense of beingbut may in fact be crucial in
obtaining medical treatment. In Western democratic-
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reproductive technology industry. Women willing to undergo difficult and often dehumanizing procedures spend
more than $1 billion annually on infertility services. The
discourse on reproduction is pervaded by images of
banks, deposits, property, products, and possessions. Articles in family magazines have such titles as Babies to
Order and Shopping for Mr. Good Genes. Sperm donor profiles read like personal ads, providing detailed information about the donors favorite colors, ability to
carry a tune, and serious hobbies. Donor eggs from
women with carefully specified education and talents are
advertised on the Internet for as much as $50,000whatever the traffic will bear. Eggs and sperm are consumer
products evaluated according to their genetic worth, and,
like other commodities, they have been subject to theft.
They are part of the commodification of kin.
Commercial enterprises have proliferated to service
the family in the age of genetics. Genetic testing is big
business, and companies are identifying not only criminals but also kin. Highway billboards and New York
City taxicabs carry advertisements: Call 1-800-DNAType. Unregulated firms provide identity tests by mail.
Dads use their services to avoid child support and moms
to claim their right to child support through paternity
identification. Meanwhile children become property
on the basis of biological criteria, and their ongoing family relationships may be disrupted.
As biological ties assume growing importance, new
business enterprises form. Search firms are in the business of finding biological parents for adoptees seeking
roots. An international registry affiliated with 450
groups worldwide is available for people looking for relativesif, of course, they can pay. Genealogy is also a
growing business, and companies have proliferated to
help people trace their genetic origins so as to avoid genealogical bewilderment. And disinterment services
are available for people who want to document, through
DNA tests, their genetic connections with a dead relativeoften to validate inheritance claims.
Family anxieties about inherited disease also have
commercial implications. Assumptions about the origins of disease or behavioral conditions imply preferred
treatments. If a condition is defined in social terms, one
looks to changes in the family or social environment for
solutions. If a condition is believed to follow from genetic endowment, the preferred treatment is drugs or
medication. Genetic explanations have contributed to
the sale of psycho-stimulants, antipsychotic agents, antidepressants, antianxiety agents, and sedatives. The pharmaceutical industry has much to gain from medicalizing
the family.
Meanwhile, the family defined by genetic predisposition may face economic problems. If a woman is predisposed to a genetic disease, her children and siblings
may also be at risk, and they all may be subject to employment or insurance discrimination. Defining the family in terms of genetic predisposition may also encourage
family decisions based on a commercial calculus. An odd
example was the mother who knew that she was a carrier
of the Huntingtons gene and that her two daughters had
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with both in relation to our more culturally created notions and interpretations of medical facts. Social scientists ought to be able to discuss etiology and causality
with a more open mind and relate their research based
on fieldwork to biomedical knowledge. This kind of
problematization is among the most fruitful aspects of
Finklers earlier research in Mexico. Even though she is
dealing with mainstream Americans here, the problem
is the same.
One last comment is on the notion of personal/emotional and molecular memory in Finklers article. In my
own research in clinical situations of presymptomatic
diagnosis, it is obvious that memory is related to the
importance of remembering. If you are depending on the
medical history for information about your own risk or
that of your children, your memory may be sharper than
it is with regard to distant kin that you ought to inform
about the familys risk. Here there is also a difference
between those who have a diagnosis based on genealogical mapping and those whose diagnosis comes from a
genetic test. But the main argument here is that a persons memory is the only material there is on which
to base a presymptomatic risk diagnosis, and DNA can
only confirm from the tests that have been taken
whether people carry the same mutation on a gene. The
power in genetic research is with the informant, the person who exposes his or her family and kin by mentioning
them as potential carriers of a predisposition. Finklers
statement that DNA remembers what has long been forgotten is of course valid only when you can check
whether people are trying to invent ancestors. Family
members who are not visualized by the memories of
their kin do not exist even for the memory of DNA.
Reply
kaja finkler
Chapel Hill, N.C., U.S.A. 13 xii 00
The various responses to this paper are gratifying in that
they stimulate so many exciting new ideas and broaden
the perspectives for the study of family and kinship in
the context of beliefs about genetic inheritance. They
also testify to the tensions between the two theoretical
approaches in anthropology that this paper straddlessocial constructivism, advanced by Franklin, Gusterson, and Nelkin, and positivism, advocated by Hadler
and Evans, Richards, and Sachs. I hasten to add that these
tensions exist also in other academic disciplines, including philosophy (between nominalism and realism).
I thank all the commentators for the time and careful
consideration they gave to this paper and Dolgin for calling attention to my 2000a book, which would probably
answer some of the concerns raised by Nelkin, Richards,
and Sachs. In this reply, I will first address the individual
commentators observations and then move on to some
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pelling term, although I agree with Gusterson that medicalization is a more general and geneticization a
more specific term for the phenomenon at hand.
Melhuus too takes the notion of the medicalization of
family and kinship in a new direction, especially in likening the family medical history to an identity document that has the power to include and to exclude. I
consider Melhuuss notion that identity documents are
issued by the state and family medical histories are insidious gatekeepers highly original. Indeed, one already
hears predictions that soon we will carry on our bodies
chips encoding our DNA that can be used for multiple
purposes in the public and private domains.
I am indebted to Sachs for noting that my analysis is
applicable to Nordic Europe as well. Along with Melhuus, I hope that studies will be done cross-culturally
to address the extent to which the medicalization of family and kinship takes place in different Western and nonWestern settings. I too was surprised by my findings
about adoptees. Although it would be incorrect to reduce
the reasons for their searches to purely medical ones, all
the adoptees I interviewed but one identified the need
for a family medical record as one major reason for
searching for their biological families.
Sachs notes and Melhuus too has found that people
may have their doubts about the ideology of genetic inheritance. This is clear from narratives of women with
breast cancer (Finkler 2000a). It is fascinating, however,
that while people contemplate alternative explanations
for their affliction, including exposure to environmental
toxins, most reject them in favor of genetic inheritance
because the ideology of genetic inheritance has become
naturalized.
Sachs calls attention to an important distinction between the ways in which people become conscious of
the ideology of genetic inheritancewhether through
the taking of a medical history or through DNA testing.
However, this distinction fails to account for healthy
adoptees determination to find their birth mothers, inasmuch as they have not been exposed to genetic counseling. The adoptees have, however, been exposed to biomedicine, to the media, and to the zeitgeist. Arguably,
there are cultural differences between Europe and the
United States that may also influence the ways in which
people become conscious of beliefs about genetic inheritance. Nelkin and Lindee (1995) show that in the United
States we are constantly bombarded by reports on genetic
inheritance in the print and visual media. Judging by
Melhuuss observations, what Hornblower (1999) has described as roots mania has not yet reached Norway.
Aside from the mass media and genetic counseling,
however, another dimension to the medicalization of
family and kinship that influences peoples perceptions
of genetic inheritance is the pervasive scientific ethos
that insists on evidence for any claim. A familial medical
history supplies such evidence. People may discount alternative explanations, such as the possibility that the
entire family was exposed to similar toxins that might
have produced the disease or, as in Mayas case, that her
family was bewitched. Moreover, as many adoptees have
pointed out and as we have seen in Kristens case, physicians depend on a familys medical history to make the
diagnosis that the disease is familial (Richards 1996).
Even so, Sachss concern about the ways in which people
learn about the belief in genetic inheritance should alert
future investigators of medicalization to address this
question.
Finally, Sachss point about DNA as memory seems
to suggest that humans beings have a choice about what
they remember. Of course, as Freud recognized long ago,
memory of any kind is selective. However, the medicalization of family and kinship requires people to remember; it makes memory of kin important.
Richards incorrectly asserts that I attribute medicalization to the new genetics. In fact, I recognize that medicalization is not new, and nowhere do I suggest that the
Human Genome Project is responsible for it. The HGP
assumes that identifying the genes will open the door to
the understanding of disease. For example, according to
the web site of the National Human Genome Research
Institute, Our genes orchestrate the development of a
single-celled egg into a fully formed adult. Genes influence not only what we look like but also what diseases
we may eventually get. The HGP also promises to usher
in an era of molecular medicine, with precise new approaches to the diagnosis, treatment, and prevention of
disease (www.ornl.gov/hgmis/faq/faqs1.html4/20). Furthermore, Francis Collins (1999), director of the National
Human Genome Research Institute, has hailed the project as the book of life that will be opened by the year
2002 and will explain, cure, and predict nearly all human
diseases.
Richards points out that the family medical history
was adopted by biomedicine in the 19th century, at a
time when there was also great concern about inherited
diseases, albeit understood more in Lamarckian than in
Mendelian and Weismannian terms. His remark supports my point that the taking of medical histories is
linked with hereditarian views. His report that knowing
that a disease is familial often relieves the patient of
responsibility for it is a point that emerges from many
narratives (Finkler 2000a). We can sense Kristens relief
that she is sane on learning that Raynauds disease is
rooted in her heredity. As has Richards, I have found that
knowing that a disease is inherited also gave informants
a sense of control. What is more, I have found that for
some the notion of surviving a familial history of affliction is evidence of the strength of the family rather than
its weakness.
Richards is correct that the new paternity testing for
child support will raise new issues, adding yet another
dimension to the medicalization of family and kinship.
As Daniels (1997) demonstrates, the fathers genetic contribution to his offsprings health state is invisible, disease in the child usually being attributed to the gestational mother. With the medicalization of family and
kinship the fathers role in his offsprings health will
become more visible and he will need to accept responsibility in many new ways.
Richards may have overlooked my n. 7, in which I cite
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