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2 Representing Objectivity Through Magnetic Resonance Imaging (MRI)

2 Representing Objectivity Through Magnetic Resonance Imaging (MRI)

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202



14.3



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Technology and Health



Genetic Testing and Screening



A similar process, known colloquially as ‘genetic essentialism’, has occurred in

relation to genetic testing. The field of genetic testing and screening has taken off

over the past few decades. There are now four general types of genetic or chromosomal testing. The first is reproductive testing, which includes prenatal screening.

Reproductive testing involves both relatively mature technologies such as amniocentesis or chorionic villus sampling (CVS) and also newer technologies such as

preimplantation genetic diagnosis (PGD) (Franklin and Roberts 2006). It can

involve screening for chromosomal anomalies such as Down’s syndrome, or testing

for genetic diseases such as Tay-Sachs disease. Reproductive testing also involves

informing intending parents whether they have carrier status for disease-causing

mutations, such as the FXS gene for fragile X syndrome, which is the most common

genetic cause of intellectual disability (Raspberry and Skinner 2011). This can

inform reproductive decision-making. The second type of genetic testing is predictive testing, in which tests for single gene disorders are conducted to see if the

patient carries the mutation which will give rise to a disease. The best known of

these predictive tests is the test for the mutation which leads to Huntington’s disease; this test, which has been available since the early 1990s, can give definitive

information regarding whether this neurogenerative disorder will manifest, and

approximate information regarding age of onset (Leontini 2006; Konrad 2003). The

third type of genetic testing is susceptibility testing, which looks for genetic variations increasing the risk that one will develop a disorder. Susceptibility genes have

only partial penetrance; they increase the risk of disease but do not guarantee its

development, and they thus provide only statistical probabilities rather than definitive information. Two well-known susceptibility tests are for the BRCA mutations

which increase the risk for hereditary breast and ovarian cancer; these have been

available since the mid-1990s (Mozersky 2012; Rowley 2007). Another test garnering attention is the recently developed test for the APOE 4 allele, which increases

the probability that one will develop Alzheimer’s disease (Lock 2013). Clinical testing is a fourth type of genetic testing, in which genetic markers are identified to

inform treatment decisions such as which type of medication to prescribe. As is

clear from this overview, genetic testing is complex and varied; there are unique

social issues for each test, as well as for the differing types of testing; we will see

that genetic testing is also constituted differently in many national and regional

contexts.

Social scientists have been interested in genetic testing since its development in

the late 1980s and early 1990s. A classic early paper coined the term “geneticization” to identify the way differences between individuals were being reduced to

their DNA codes, and most disorders, behaviors and variations were being understood as being at least partly genetic in origin (Lippman 1992: 1470). Lippman

(1992) further noted that terms such as ‘blueprint’, ‘holy grail’ and ‘the book of life’

contributed to the hype which saw genes as causal and determining in human life.

Although most of this over-enthusiasm has dissipated amongst the scientific



14.4



Somatic Individuality



203



community as the complexity of the genome and its environmental context becomes

apparent (Lock and Nguyen 2010; Lipton 2008; Pickersgill, et al. 2013), the belief

that genes are simple, determining agents can still be found amongst laypeople in

European cultures (Duden and Samerski 2010). Genetic testing has been called a

modern type of divinatory practice (Lock 2013; Konrad 2003), and as with all divinatory practices aiming to take control of the future, new ambiguities and uncertainties continually surface (Lock 2013: 175). It is simply not possible to calculate and

fully know the future through genetic testing.



14.4



Somatic Individuality



As the human genome project was coming near to completion, a key paper was

published that established a way of connecting genetic technology with changing

understandings of identity and personhood (Novas and Rose 2000). Novas and Rose

(2000: 487) used the term ‘somatic individuality’ to describe the way that “…new

and direct relations are established between body and self”. As new forms of genetic

self-description segue with the widespread use of biomarkers such as blood pressure and cholesterol levels, people come to understand their individuality biologically. These new forms of subjectivity are then linked to life strategies that draw on

the divinatory possibilities created by technologies such as genetic testing. That is,

people will draw on genetic testing to make the future calculable, and then will

manage their lives in light of knowing future risks their genetic endowment may

create (Novas and Rose 2000). The ‘somatic individual’ thus used genetic testing to

become the ideal health consumer, responsible, prudent and self-actualising through

an enterprising approach to medical surveillance and health lifestyles (see Chap. 2).

Duden and Samerski (2010) note that lay understandings of genes are quite different from the view provided in the genetic counselling consultation. Many people

understand genes fatalistically, as an incarnate endowment handed down by one’s

ancestors and pre-destining the future. However, in the clinic, people are led to see

their genetic endowment as a complex set of statistical risks that are instead a call to

action. They are taught to manage themselves, much as an insurance broker might

do in relation to an abstract risk profile (Duden and Samerski 2010). Genes are, as

Lock and Nguyen have put it, forms of “embodied risk” (Lock and Nguyen 2010:

303; Lock 2013). It is this tying together of the statistical with the individual, the

calculable with the unique and personal, that gives genetic prediction its cultural

power (Duden and Samerski 2010: 172).

The concept of ‘somatic individuality’ mapped out by Novas and Rose has been

extensively discussed. One fruitful area of extension has related to the family. As

Novas and Rose (2000) pointed out, genetic identity is revealed within a web of

family memories, caring obligations and family commitments. This insight has

been developed by others, who have looked closely at the way that family responsibility, and family bonds, affect what people do with genetic information (ArribasAyllon et al. 2008; Raspberry and Skinner 2011). People sometimes feel an



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obligation to be tested, so that others in their family can have this information, for

example. Moreover, they tend to understand their own risk through concepts of

‘blended inheritance’, believing they are more at risk of an illness developed by a

family member they resemble (Lock 2013). Somatic individuality is inevitably

individuality-in-relation to others.

Novas and Rose (2000) emphasised the theme of responsibilization, and the

nature of responsible action in relation to genetic knowledge has since been pursued

from a wide variety of angles (Lawton, et al. 2007; Mozersky 2012; Raspberry and

Skinner 2011; Leontini 2010; Lemke 2010). It has become clear that ‘genetic

responsibility’ operates in multiple ways. For example, Leontini (2010: 10), writing

about reproductive testing for Huntington’s disease in Australia, notes that only

15–20 % of the estimated people at risk for this disorder have actually been tested

for the mutation. This was surprising because the dominant narrative of reproductive responsibility assumes that most people want genetically related children, and

that they also want to eliminate hereditary risk from future generations; on this

basis, it had been estimated that up to 80 % of people from affected families would

want to be tested (Leontini 2010). However, genetic testing – particularly if the test

is positive – raises strong emotions, such as guilt and anxiety; it leads to a powerful

change in self-identity. It also has eugenic connotations, in its implicit view that a

whole class of genetic carriers should be eliminated from the population.

Furthermore, there are practical implications, including the very real prospect of

genetic discrimination in relation to employment or insurance. While such discrimination is now highly restricted in many European, Australasian and North American

contexts, it continues to exist on a small scale, particularly in relation to the

Huntington’s disease mutation where, for example, the British Genetics and

Insurance Committee approved the use of a genetic test when writing large insurance policies (Thomas 2012; Lander and Van Hoyweghen 2014). Similarly,

Raspberry and Skinner (2011) found that while most women carrying the FXS

mutation for fragile X syndrome interpreted responsibility as not giving birth to an

affected child, about 1/6 of these women chose to carry a possibly affected foetus to

term. They made this decision out of a desire to positively affirm the worth of their

children who had fragile X syndrome, and to value such differences. Thus, ‘genetic

responsibility’ does not always involve foreclosing seemingly adverse genetic

futures. It takes a multitude of forms.

The concept of somatic individuality was developed in relation to advanced liberal societies (Novas and Rose 2000), and it may be that the nexus of genetic medicine, notions of personhood, and health lifestyles operate very differently in

non-Western contexts. In regards to this question, Sahra Gibbon has done some

interesting work on the way breast cancer heredity is constituted within the context

of ‘Community Genetics’ in Cuba (Gibbon 2009, 2011; Gibbon et al. 2010). Public

health is important to the revolutionary symbolism of Cuba; the excellent health

outcomes achieved on very limited resources are testament to the value of an

approach based on the principle of “health for all with a primary care focus” (Gibbon

2009: 134; and see chapter 15). Community genetics emerges out of this public

health attention to maternal and infant health, and to family medicine; its clinics are



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Somatic Individuality



205



deeply rooted in neighbourhoods and communities (Gibbon 2009, 2011). Lacking

the financial and technological resources to do susceptibility genetic testing for

BRCA mutations, community geneticists engage in an extensive practice of taking

family histories in relation to cancer and other diseases.

Unlike the neoliberal focus on individual risks for breast cancer found in Western

liberal countries, Cuban women drew on these public health discourses to identify

its causation in collective hazards that are outside individual control. They identified

war, environmental pollution, ozone depletion and nutritional deficiencies brought

on by the United States’ economic embargo and the ending of Soviet subsidies as

causes for breast cancer (Gibbon et al. 2010; Gibbon 2009). They also identified

physical blows to the breasts as important causes (Gibbon 2011). None of these

causes can be found in the body; neither are they amenable to individual or even

collective lifestyle changes. ‘Gene talk’ had no resonance with women in Cuba, and

even the rather vague notion of heredity was seen as a relatively minor factor, important largely because the community geneticists asked about it. The idea that genes

created personhood, and generated calculable risks that can be addressed through

prevention and lifestyle was thus almost completely absent in Cuba. What this

makes clear is that “technopolitical regimes” are shaped by nationally specific

arrangements; they involve the interweaving of healthcare institutions, political processes, societal cultures and national myths (Felt and Mϋller 2011: 347).

Within advanced liberal societies, the idea that genes produce a calculable risk of

disease, which can then be ameliorated or prevented, is also coming under attack

from a different direction. Advances in the biological sciences are making clear just

how complex the genome is, and how difficult it is to quantify genetic risks (Rose

2010; Lock and Nguyen 2010). The human genome project produced a surprise

when it was discovered that, far from the more than 100,000 genes expected, there

are in fact fewer than 30,000 genes in the human genome. More than 97 % of the

human genome does not code for proteins, and genetic sequences may code for

many proteins. Alternatively, a single protein may be related to more than one

genetic sequence. In effect, there is no such thing as ‘the gene’ as it was once understood (Lipton 2008; Lock and Nguyen 2010; Rose 2010). This complexity is managed through varied regulatory processes occurring in the cell, and in the non-coding

parts of the human genome, where biological, environmental and social processes

may lead to particular genetic sequences being temporarily or permanently switched

on or off (Pickersgill et al. 2013; Lock and Nguyen 2010; Rose 2010). Genetic

sequences thus interact with each other, and with the environment, in complex ways

that must be understood holistically; it is for this reason that scientists now talk

about the genome, rather than about individual genes. In this context, it is almost

impossible to create quantifiable individual predictions of the risk generated by

complex susceptibility genes.

For example, there is a great deal of talk about the APOE 4 allele, which is said

to increase one’s risk of developing Alzheimer’s disease. However, at least 50 % of

APOE 4 carriers never get Alzheimer’s disease, while between 23 % and 68 % of

patients diagnosed with late onset Alzheimer’s do not have this allele (Lock and

Nguyen 2010: 340; Lock 2013: 145). Up to 25 % of ‘normal’ individuals in their 80s



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carry APOE 4 (Lock 2013: 146). Moreover, as of 2009, there were over 30 other

genetic loci showing at least one variant associated with Alzheimer’s disease (Lock

2013: 159). Most of these genetic markers were associated with extremely small

amounts of increased risk, although it is possible that small overall levels of risk are

disguising rare specific mutations or variants that create much higher levels of risk.

Given such complexity, it is impossible to say anything definitive about one’s risk

of developing Alzheimer’s disease on the basis of genotyping. Perhaps unsurprisingly, a randomised controlled trial of the consequences of giving people their

Alzheimer’s disease genotypes through genetic counselling showed that few people

acted on the information they were given, and a year later, more than half did not

accurately remember it (Lock and Nguyen 2010; Lock 2013: 187). The thesis that

people will create life strategies on the basis of genetic predictions falls short in

such a complex field of information.

However, the idea that genes comprise a simple ‘code’ that creates particular

characteristics and disorders does survive in one important arena. Direct to consumer (DTC) genetic testing companies have been springing up, particularly in the

United States, but also in countries as varied as Ireland, Iceland and South Africa

(Einsiedel and Geransar 2009; Lewis et al. 2011). These companies tend to adopt a

genetic determinist approach within their internet advertising, underlining the

genetic basis for multifactorial conditions, while failing to mention gene-gene or

gene-environment interactions that attenuate or complexify that risk (Einsiedel and

Geransar 2009; Lewis et al. 2011). Many such companies do not employ genetic

counsellors, and thus risk information is provided without personal assistance in

interpreting it. A study of the website information published by these companies

found that most companies provided very little information that would enable customers to understand the limits of the information they were receiving. For example,

no company reported that, because most genomic studies have been conducted on

people of European ancestry, risk estimates are less valid for those of different

ancestry (Lewis et al. 2011: 299). No company informed potential customers that

the tests they were performing predicted only a fraction of total heritability (Lewis

et al. 2011: 299). Several firms buried the information that genetic tests could not

provide definitive answers within legalistic terms of service documents, while most

other firms did not provide this information at all (Lewis et al. 2011). Most companies did not mention the social or psychological risks attendant on discovering oneself at increased risk of a major disease. These companies sell genetic testing with

appeals to ‘control’ and ‘empowerment’ through knowledge of one’s risks; in this

arena, then, the concept of somatic individuality is alive and well.



14.5



Transnational Reproductive Markets



We can see the co-constitution of societal processes and new technologies very

clearly in the case of the growing markets in assisted reproductive technologies

(ARTs) that cross national borders. Since the first IVF baby was born in Britain in



14.5



Transnational Reproductive Markets



207



1978, the technology has become normalised as a form of reproduction; by 2012, it

was estimated that five million children had been born as a result of ART (Payne

2015: 107). More recently, IVF has been accompanied by a suite of technologies

involving third party reproduction; in other words the reproductive group involves

more than just the mother and the father. It may also involve donor insemination,

third party egg donation or a gestational surrogate who carries the pregnancy to

term. There is little reason that such third parties involved in the reproductive process have to be locally available.

As assisted reproduction has developed, widely varying regulatory regimes have

been put into place in different national contexts. For example, there is little or no

such regulation in some American states such as California (Leve 2013; Cooper and

Waldby 2014), and as a result a commodities market has grown there. In the

European Union, legislation prevents the open development of a commodities market in gametes; people can be compensated for their time, expenses and inconvenience in donating, but they cannot be paid for the eggs or sperm themselves.

However, differing European Union states interpret that legislation in widely varying manners. In India, an Assisted Reproductive Technology Regulation Bill is

adopting a liberal approach for the purposes of building a transnational market in

reproductive health care (Vora 2013; Harrison 2014). These differences in national

regulation create the basis for a cross border trade in reproductive health care. In

what is sometimes known as ‘reproductive tourism’ or ‘fertility tourism’, older and

richer people from wealthy countries with restrictive legislation or expensive clinics, travel to poorer countries with more liberal regulations and less expensive clinics, to receive IVF treatment with donated eggs, or to conceive an infant who will be

carried to term by a gestational surrogate (Cooper and Waldby 2014; Payne 2015;

Vora 2013).

Donating eggs is not a small matter. It requires daily injections of hormones for

about 3 weeks to suppress ovulation and then hyperstimulate the production of the

ovaries. These injections can have mild to severe side effects, and there is a small

risk of ovarian hyperstimulation syndrome which can lead to severe injury or death.

Egg retrieval involves sedation with a general anaesthetic and minor surgery (Leve

2013; Cooper and Waldby 2014). Because of the pain and difficulty associated with

oocyte donation, there is a chronic shortage of viable eggs in most jurisdictions.

Where an open market in oocytes exists, the shortage disappears, but such eggs are

expensive. In California, a white, tall, slim donor with an Ivy League education, and

who is thus particularly biodesirable (Payne 2015), can be paid up to US $50,000

for her eggs (Cooper and Waldby 2014: 57). In California, the cost to egg recipients

for ART treatment can be $80,000 to $150,000 (Harrison 2014). In Northwestern

Europe, restrictive legislation and policy means that there are huge shortages of

oocytes; long waiting lists, upper age limits for treatment, and a lack of donor anonymity make it difficult to obtain ART treatment with donated eggs. For example,

when the British Human Fertility and Embryology Authority banned anonymous

egg and sperm donation, the supply of gametes soon shrank, and there was a significant increase in the number of British citizens travelling abroad for reproductive

health care (Harrison 2014). In a forced choice (Payne 2015), wealthier women who



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have delayed childbearing while establishing a career can thus find themselves

looking abroad for an egg donor. A Dutch study found a threefold increase in the

numbers of women travelling abroad for egg donation between 2000 and 2008

(Cooper and Waldby 2014: 69). Moreover, a recent six country survey of 1,230

cross border medical patients in Europe, found that nearly a quarter reported they

were seeking oocytes (Cooper and Waldby 2014: 69).

Women in Spain, Eastern European countries such as Poland and the Czech

Republic, the Baltic states of Latvia and Estonia, and Southeastern European states

like Romania may find themselves in the position of oocyte vendors. In many of

these post-communist or Southern European countries, the arrival of neoliberalism

has seen the collapse of welfare states, the decline of steady reliable work for young

women, and the development of an entrepreneurial culture. In this context, less

wealthy young women can find the compensation rates paid out under liberal interpretations of EU regulations quite attractive. Michal Nahman’s (2008) study of

Romanian egg donors found that they were living on wages that were below comfortable subsistence levels, and were donating eggs in order to earn money for rent,

education, house renovations and other necessities. The US $200 cash which was

the going compensation rate in Romania was twice the average monthly salary of

the donors at that time. Eastern European donors are particularly desirable to egg

recipients in Northwestern Europe because they are phenotypically ‘white’ and look

European.

The cross border trade in oocytes is leading to pressure to liberalise regulations

in those Northwestern European countries that are providing most of the fertility

tourists. For example, the United Kingdom in 2011 liberalised their regulations to

allow egg donors to be paid compensation in cash, in a lump sum, as was already the

case in Spain. They also changed the regulations to allow women to be compensated

for the inconvenience to them and not just for direct expenses (Cooper and Waldby

2014; Payne 2015). These European assisted reproduction technologies are thus

being re-constituted as located within market logics, rather than bioethical logics.

As this occurs the cultural meanings of these technologies also change.



14.6



Case Study – Gestational Surrogacy in India



Gestational surrogacy is also a growing transnational industry. In what is a new version of the feminized ‘chains of care’ which have been extensively discussed in the

sociological literature (Deomampo 2013), young women in countries such as India

are leaving their families to live in hostels tied to an IVF clinic, where they undergo

IVF treatment with donor gametes or a commissioning couple’s egg and sperm,

have a pregnancy spent under extensive medical surveillance, give birth and then

give the child up to the commissioning couple (Deomampo 2013; Vora 2013; Vora

2014; Pande 2010). Surrogates were paid approximately US $6500 for the entire

process in 2013 (Harrison 2014), which can be up to five times the usual annual

household income for these women. While most commissioning couples are also



14.7



‘Empowerment’ Through Health Apps



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Indian, a substantial minority – estimates range from 15 to 30 % – come from abroad

(Harrison 2014: 148). In this industry, poor women of colour are servicing the

reproductive needs of wealthy, sometimes white, couples from both India and

Western nations.

The industry is growing rapidly. Surrogacy was legalized in 2002 in India, and

by 2012, the women’s organization Sama estimated that there were approximately

3000 clinics in India offering surrogacy services (Harrison 2014). The country is

attractive because it has cutting edge medical technology, highly trained English

speaking doctors, low wages leading to low costs, and a liberal policy environment;

as a result the surrogacy industry was adding an estimated US $2.3 billion to India’s

gross domestic product in the year 2012 (Harrison 2014). The poverty of the surrogates and their distance from the home countries of the commissioning couples is

also said to be attractive; from a position of weakness the surrogates are not able to

challenge the commissioning couple for custody of the child or make ongoing

claims against them (Harrison 2014).

The surrogates are coached in the Western biogenetic model of kinship; that is to

say, a form of genetic essentialism is taught to them in which it is not their child as

they are not providing DNA. Rather, they are encouraged to think of their womb as

an empty room that they can rent out for 9 months to another couple (Vora 2013:

S100; Vora 2014: 72). This way of separating sexuality and reproduction, and of

imagining the act of gestating a child as a paid service occupation, is not natural to

the rural and less educated women who become surrogates. They generally desire

an ongoing relationship with the commissioning parents, and experience grief when

giving the child up to them. Through everyday models of kinship, they tend to feel

that gestation is indeed mothering, and creates a form of kinship with the child. In

this form of gestational surrogacy then, very different understandings of motherhood and kinship exist in uneasy tension with each other; however, the surrogates

are not powerful enough to defend their understanding, and the biogenetic model is

the one which prevails (Vora 2013: Vora 2014; Harrison 2014; Pande 2010).



14.7



‘Empowerment’ Through Health Apps



In the case of an emerging technology, we can see multiple processes by which new

societies and cultures are constituted alongside new versions of the technology concerned. Mobile health apps are one such technology (also discussed in Chap. 2). In

the early days of the world wide web, a mass development of health and medical

websites occurred. Most of these websites were fairly static, rarely updating their

content, and offering little in the way of interactivity. There was also some development of online discussion groups, which allowed patients to exchange experiences

(Lupton 2014d). Concern was raised that these websites would provide false or

misleading information, but very quickly, large institutional providers of highly

verified medical information were coming up first in online searches, and were thus

predominating in usage.



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