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United Kingdom’s Wellcome Trust. Furthermore,

information on the sequencing of all human

genes was to be made freely available via the

internet. The ethos of the policy of publicly

funding the human genome project is that it is a

democratic resource intended to maximize the

benefits for society as a whole. Nevertheless, commercial

companies were involved in a race to map

and sequence the human genome, and the American

company Celera Genomics developed a rapid

gene-sequencing technique and subsequently took

out commercial patents in order to profit from

this work. In response, work being undertaken

on the human genome project accelerated and a

race between these two groups to be the first to

announce the completion of an initial draft of the

human genome developed. In June, 2000, President

Bill Clinton of the United States and Prime

Minister Tony Blair of the United Kingdom made a

televised announcement that the work of the

human genome project was almost complete.

The announcement was made five years before

the original estimate of completion, and it was a

further two years before the project was officially

declared complete. The announcement made

headline news around the world and was surrounded

by much media-fueled hype, with politicians

and scientists variously describing it as the

most wondrous map ever made and more important

than the invention of the wheel.

The human genome project and recent developments

in genetics are surrounded by triumphalist

accounts of scientific progress. While there has

been little in the way of sociological theory to

explain the phenomenon of hype that pervades

this field, some have noted that such hype plays

an important role in generating the necessary

funding and investments for projects such as the

human genome and other biotech endeavors.

Alongside the creation of high expectations that

genetics and associated technologies will bring, it

is recognized that developments in genetics also

raise new ethical problems. While this new form

of scientific knowledge has promised to bring

about cures for many diseases, and the elimination

of inherited disabilities, genetics is also

understood to raise new ethical issues and fears

about the social consequences of such

interventions.

Concerns were voiced from the outset about

the ethical, legal, and social implications of the

human genome endeavor. In the United States,

James Watson successfully argued for the case

that 5 percent of the total science budget should

be set aside to study and address these issues.

There has also been a growing expansion in the

funding of similar projects in other countries.

These initiatives are understood as playing an important

role in the governance of genetic developments.

Critical questions have been raised about

whether such new technologies for reading our

genetic constitution would challenge human

identity and freedom, create unjust discrimination,

and invade our privacy. Although many

sociologists are now working in the field of bioethics

alongside philosophers and lawyers, this is an

uneasy alliance. There is a growing sociological

critique of bioethics, which maintains that bioethics

involves a narrowing of debate, is focused too

much on individuals at the expense of the social,

and too often readily legitimizes genetic developments.

Sociologists have in general been more

critical of recent developments in genetics. Some

have suggested that developments in genetics are

promoting a return to eugenic practices and generating

genetic determinism. Others are less critical

and, while acknowledging that genetics is

extremely powerful in shaping ideas, see the

emergence of new kinds of identities, forms of

personhood, and social relations developing. Various

surveys carried out to ascertain public opinion

on developments in genetics indicate that, while

there is widespread support for developments related

to improvements in health, there is also

widespread concern about scientists “tampering

with nature.”

Advocates of projects to map the human

genome claim that the information produced

will illuminate the causes of human disease,

genetics genetics

237


improve treatment, and, in general, increase our

health and well-being. Certainly there are now

tests available for detecting over 1,000 genetic

diseases and conditions. Although not all of these

are readily accessible in the clinic, the availability

of such tests is growing at a rapid rate. Tests are

used variously: to diagnose those suspected of

having a genetic disease, to predict the likelihood

of the existence of genetic disease in asymptomatic

individuals with a family history of genetic

disorders, and to identify carriers of a genetic

disease (that is, those at risk of passing the disease

on to their children but who do not themselves

have susceptibility to the disease). Tests are also

carried out during pregnancy and after birth. Prenatal

testing is performed during a pregnancy to

assess the health status of a fetus. Such tests are

offered when there is an increased risk of having a

child with a genetic condition due to maternal

age, family history, or fetal ultrasound examination.

Preimplantation testing is performed on

early embryos resulting from in vitro fertilization

(IVF) in order to decrease the chance of a particular

genetic condition occurring in the fetus. It is

generally offered to couples with a high chance of

having a child with a serious disorder. Newborn

screening identifies individuals who have an

increased chance of having a specific genetic

disorder so that treatment can be started as soon

as possible. Nevertheless, while the human

genome project has helped to identify a number

of genetic conditions, there are only a few treatments

available. Most genetic conditions cannot

be treated and the reduction in the numbers

of individuals being born with such conditions is

a result of pregnancy terminations or through

the selection of healthy embryos identified by

genetic testing during IVF. There have also been

a number of educational programs aimed at raising

awareness among certain ethnic groups (see

ethnicity and ethnic groups) that have been identified

as having increased susceptibility to certain

genetic conditions. Those of eastern European

(Ashkenazi) Jewish descent, for example, are often

targeted, as chances of being a carrier of Tay

Sachs disease are significantly higher in these

populations.

A number of commentators have expressed concern

about the commercialization of genetic tests

and testing services. The biotech company Myriad

Genetics, for example, has taken patents out on

the genetic codes relating to the two genes most

commonly associated with hereditary forms of

breast cancer and has been successful in creating

exclusive rights over these genetic tests. Many

other genetic tests are now readily available over

the internet, with tests such as those used for

establishing paternity being increasingly used in

disputes between parents as well as by agencies

involved in determining child support.

Many critics of contemporary genetic practices,

such as Troy Duster, suggest that the introduction

of clinical testing and genetic screening programs

that have steadily increased since the late 1980s

have created a Back Door to Eugenics (1990). Duster

clearly warns against the dangers of prenatal detection

of birth defects, gene therapies, and genetic

solutions to problems associated with various

racial minority groups. He also documents an increasing

propensity to see crime, mental illness,

and intelligence as expressions of genetic dispositions.

Feminists and disability scholars, too, have

expressed concern about the social implications of

genetics, especially its reliance upon abortion to

prevent the occurrence of genetic disease. In Genetic

Politics (2002), Ann Kerr and Tom Shakespeare,

while acknowledging that the recent implementations

of practices and policies related to genetic

technologies are very different from those in the

past, also warn that there is a fine line between

contemporary policies and practices on abortion

and diseases and the past practice of compulsory

sterilization for deviancy. They argue that genetics

reinforces medical-genetic definitions of

disability, makes judgments about the social

worth of disabled persons, and ultimately involves

decisions about what kinds of persons ought to

be born.


A number of scholars have criticized the costs of

mapping the human genome and the possible

discriminatory and eugenic applications of the

information it will provide. They have raised concerns

such as the implicit assumptions in the biomedical

discourse in which the “benefits” of

genetics are proposed, and the ways in which genetic

tests shape definitions of illness and health,

normality and abnormality. The terms geneticization

and genetic determinism were first coined in

the early 1990s to refer to the ways that social and

other environmental conditions that shape the

manifestation and meaning of bodily characteristics

and behavior have been ignored in preference

to biological and genetic understandings. Abby

Lippman is credited with first using the term

geneticization to build upon the concept of medicalization,

whereby people come to perceive the

body in conformity with biomedical categories.

From this perspective, genetics is highly problematic,

as it is based on false biological reductionist

and deterministic assumptions which generate a

genetics genetics

238


sense of fatalism. In a similar vein, Dorothy Nelkin

and Susan Lindee in The DNA Mystique (1995) argue

that the gene has become a very powerful cultural

icon and that a process of genetic essentialism is

occurring whereby what it is to be human is increasingly

understood in genetic terms. Such

geneticization, these critics argue, stems from

highly exaggerated claims made by scientists and

the ways in which powerful metaphors such as

“genetic blueprint” and the “book of life” have

been used to describe the human genome. The

media in particular are seen to play a vital role

in conveying and proliferating the iconic status of

the gene.

Nevertheless, concerns about geneticization

and a return to eugenics are not shared by all

scholars in this area. Nikolas Rose and Carlos

Novas, for example, maintain that such approaches

oversimplify the shifts in the form of

personhood that arise as a result of the growing

awareness of genetic risk. They claim that the new

genetics does not so much result in individuals

seeing themselves and their lives along predetermined

genetic lines, but rather that knowledge of

genetic risk transforms their identities and relations

with medical experts in novel and unexpected

ways. The growth in various forms of

patient activism – such as those coalescing around

web-based forums and patient organizations that

not only raise funds to find cures for genetic diseases,

but also help direct scientific agendas – are

evidence, they argue, of a more active self-actualizing

form of personhood.

There has been a great deal of research within

the field of medical sociology examining the experience

and understandings of those who are

understood to be genetically at risk of disease.

The new genetics is based primarily on those selfidentifying,

and being identified, as at risk. Much

of this work is based on a phenomenology approach,

focusing on descriptive analyses of the

procedures of self-, situational, and social constitution

of those who have experienced genetic

testing or understand themselves as living with

an increased risk of disease. While much of this

work, too, highlights the ways in which individuals’

knowledge of genetic risk may generate a

sense of responsibility towards others, in particular

family members who may also be at risk, such

research also demonstrates the difficulties and

dilemmas faced by those at risk.

Risks in the form of the consequences of genetic

engineering or genetic modification of human

and other living organisms have also been a subject

of debate for scholars.

There is concern that genetic engineering of

humans, where faulty genes are either repaired

or replaced, might alter the germline cells (those

cells that have genetic material that may be

passed on via reproduction to a child) and irreversibly

alter the genetic makeup of future generations.

In The Future of Human Nature (2003),

Ju¨rgen Habermas argues that positive eugenics

such as genetic engineering, along with other

forms of genetic enhancements, should be forbidden.

The reason for forbidding such interventions

is that they undermine what it is to be human by

ignoring the autonomy of future generations and

their standing as moral agents. Drawing upon

Max Weber’s notions of rationality, John Evans,

in Playing God! (2002), examines bioethics and

policy debates about genetic engineering. Evans

demonstrates that many such debates, although

initially broad-ranging, quickly tend to become

narrowly defined, focusing more on how best to

achieve the scientific aims rather than on the

desirability or otherwise of the aims themselves.

Developments in the new genetics raise profound

questions about democracy and citizen

rights. Fears about the undesirable social consequences

of developments in genetics have

prompted governmental and international regulations

and statements.

In 1997, for example, the United Nations Educational,

Scientific and Cultural Organization

(UNESCO) drew up a Universal Declaration on the

Human Genome and Human Rights. The declaration

affirms the human dignity of each individual, regardless

of his or her genetic endowment, and sets

out ethical principles for the conduct of research,

treatment, or diagnosis related to characteristics

of a person’s genome. It calls upon states to

outlaw discrimination based on genetic characteristics

if such discrimination would have the effect

of “infringing human rights, fundamental freedoms

and human dignity.”

Many indigenous peoples and environmental

nongovernmental organizations oppose the granting

of patents on biological materials such as

genes, plants, animals, and humans. Some commentators

suggest that we are witnessing new

forms of “biopiracy” and the colonization of life

itself. The Human Genome Diversity Project, which

proposes to collect blood and tissue samples from

hundreds of different indigenous groups worldwide

for genetic study, has been severely criticized

by indigenous communities and human rights advocates.

They have raised questions regarding

both ownership of the genetic samples and who

stands to profit from the commercialization of

genetics genetics

239


products derived from the samples. Concerns have

also been raised in relation to the collection, storage,

and ownership of DNA for the growing

number of national genetic databases.

The creation of genetic databases has been surrounded

by controversy and debate, attracting

worldwide media attention and significant financial

investment by both public and private bodies.

At national and international levels, policymakers

have sought to define and engage with what they

see as the considerable social, ethical, and legal

issues at stake. These include informed consent,

commercialization, ownership, privacy, confidentiality,

and public confidence in the governance of

research. Many of these are longstanding areas of

public policy in relation to the new genetics and

more broadly.

An Enlightenment model of progress underpins

much of this scientific endeavor with an everincreasing

control of nature through culture. At

the same time, a number of commentators have

noted that culture is becoming increasingly biologized.

Paul Rabinow, for example, has coined the

term “biosociality” to refer to the new forms of

subjecthood and social and political practices that

are emerging, which he sees as providing a possible

basis for overcoming the nature/culture split.

OONAGH CORR IGAN

genocide

While mass killing has been a perennial aspect of

human societies, the term genocide is a relatively

new concept. It was coined by the Polish jurist

Raphael Lemkin in his Axis Rule in Occupied Europe

(1944) as the legal term to describe the atrocities

committed by the Nazis in World War II. Lemkin’s

effort aimed to provide a legal category to make

such acts justiciable under international law (see

law and society). In Lemkin’s view, genocide is a

coordinated plan that aims to destroy national

groups, in whole or in part. This plan includes

not only physical destruction, in the form of

mass murder, but also the destruction of the

group’s culture and collective identity.

Lemkin’s definition has served as the conceptual

foundation for practically all subsequent

efforts to define genocide, including those by sociologists.

Among sociologists, there is considerable

conceptual confusion about how to define genocide.

Some sociologists adhere rather closely to

Lemkin’s definition and/or legal definitions, while

others seek more expansive sociological definitions,

which outline the general structural elements

of genocide. Legalistic definitions, however,

make it difficult to engage in systematic sociological

research and theorizing about genocide.

There is some general consensus among sociologists

that genocide is the killing of substantial

numbers of people by an institutionalized, superordinate

form of power, generally a state in conjunction

with military power. The victims are

generally subordinate, both in a material sense

(lacking the means of self-defense) and in a symbolic

or ideological sense (they are socially constructed

as “threatening,” “evil,” or “dangerous”).

For many legal scholars, genocide is characterized

by what is called dolus specialis, or special intent,

but this is a difficult category to conceptualize

within existing sociological theory. Homicide is

the killing of one person, but genocide is the

killing of a number of people. There is, however,

no consensus, either among legal scholars or sociologists,

as to what the numerical threshold for

genocide is.

Much of the social science literature on genocide

relies on a naturalistic and positivistic frame

of reference that aims to predict and prevent

genocide. Barbara Harff and Ted Gurr in Early

Warning of Communal Conflicts and Genocide (1996)

have developed an “early warning” model that

provides a series of indicators that aims to predict

the occurrence of genocide. Such predictions,

however, are not at present tied closely to the

institutional means of prevention. In recent

years, genocide has occurred in Iraq, Bosnia and

Herzegovina, Rwanda, and Sudan. Owing to the

modern mass media, these genocides were widely

observed, but were not prevented. This fact indicates

that the phenomenon of “bystanding” is also

an important aspect of any definition, empirical

research, or theory of genocide in the modern

world.

For some sociologists, the relationship between



modernity and genocide is highly significant. In

his Modernity and the Holocaust (1989), Zygmunt

Bauman argues that the scale of mass killing in

the Holocaust was enabled by the very forms of

bureaucratic rationality and instrumental reason

that characterize modernity. Bauman’s sociological

view focuses less on the intent and agency

of actors or institutions and more on the power of

social roles and institutionalized practices that

enable ordinary people to become perpetrators of

extreme violence. Michael Barnett in Eyewitness to a

Genocide (2002) notes that the inability of institutions

of global governance to prevent genocide is

related to bureaucratic decisionmaking procedures,

which stress organizational norms and

imperatives to the detriment of more global ethical

norms and genocide prevention.

genocide genocide

240

Since World War II, when the term genocide



was coined, there have been numerous genocides,

which indicates that this remains a perennial

aspect of human collective behavior in the

modern world. A recent example of genocide is

in Darfur, Sudan, where as many as 300,000

people have been killed in a campaign of mass

murder and cultural destruction. This event was

recognized by the world community as genocide,

but no decisive action was taken to stop it.

TOM CUSHMAN

gerontology

The study of processes of population and individual

aging, this draws upon a wide range of

perspectives, including disciplines such as biomedicine,

the social sciences, and the humanities.

Gerontology is typically concerned with understanding

aging, first, as a biological and social

process affecting individuals across the lifecourse;

second, as a process influencing social

change through the movement of birth cohorts;

thirdly, as a significant issue for the development

of health and social policy.

Interest in the nature of human aging is longstanding,

reflected in studies of longevity and related

themes from Francis Bacon (1561–1626)

onwards. Gerontology as a discipline first emerged

at the end of the nineteenth century, notably

through investigations by Jean-Martin Charcot




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