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Frameworks of Choice

Frameworks of Choice: Predictive and Genetic Testing in Asia

Edited by Margaret Sleeboom-Faulkner
Copyright Date: 2010
Pages: 272
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  • Book Info
    Frameworks of Choice
    Book Description:

    Frameworks of Choice: Predictive and Genetic Testing in Asia is the first comparative study of predictive and genetic testing in Asia in the English language. It explores genetic and predictive testing in relation to political and social institutions such as education, healthcare, research regulation and genetic governance. It is a unique study of genomic policy-making, grounded in empirical fieldwork in China, Japan, India and Sri Lanka. The volume presents original theoretical analyses of the cultural and political dimensions of predictive and genetic testing by analysing the social, cultural, political and economic environment of choices that people have before and after they undergo a genetic or predictive test. These frameworks of choice also shed light on the different test options of people in developing countries and affluent welfare societies, explaining the so-called therapeutic gap occurring when no therapies are available after diagnosis. .

    eISBN: 978-90-485-1117-4
    Subjects: Sociology

Table of Contents

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  1. Front Matter
    (pp. 1-4)
  2. Table of Contents
    (pp. 5-6)
  3. Acronyms
    (pp. 7-8)
  4. Acknowledgements
    (pp. 9-10)
  5. 1 Frameworks of Choice: The Ramification of Predictive and Genetic Testing in Asia
    (pp. 11-26)
    Margaret Sleeboom-Faulkner

    The rapid global expansion of predictive and genetic technologies is redefining the meanings of health and healthcare, linking formulations of genetic identity to concepts of disease in terms of prevention, genetic therapy, personalised medicine and diet foods. This volume arose from the realisation that the significance of this global expansion in the field of predictive and genetic technologies in the context of Asian societies has not received the attention it deserves. The use of predictive and genetic testing (PGT) technologies in Asia is about the desire to understand current health statuses and situations, and the wish to have, or not...

  6. 2 A ‘Therapeutic Gap’: Anthropological Perspectives on Prenatal Diagnostics and Termination in Sri Lanka
    (pp. 27-42)
    Bob Simpson

    Rapid advances in biotechnology and an ever more sophisticated capacity to ‘read’ genes and chromosomes are providing startling insights into the human condition. Conditions and dispositions that might hitherto have been understood in terms of unassailable fate, chance and destiny might now be explained using the gene as the determining agent par excellence. Crucial in this respect is the proliferation of predictive genetic testing, an expanding ensemble of techniques in which blood or tissue is used to identify genetic diseases (see Sleeboom-Faulkner this volume, Chapter 1). The power of this kind of testing, however, is not just that it offers...

  7. 3 Private and Public Eugenics: Genetic Testing and Screening in India
    (pp. 43-64)
    Jyotsna Agnihotri Gupta

    Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programmes in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. There is a globalisation of testing and screening technologies in countries with very diverse health systems and services, socio-economic conditions within which users and service providers operate, and ethical and legal institutions responsible for overseeing practices. Reproductive genetics is one field in which the development and application of technology is proliferating very rapidly in developing countries, including India....

  8. 4 Population Genetic Screening for Sickle Cell Anaemia among the Rural and Tribal Communities in India: The Limitations of Socio-ethical Choice
    (pp. 65-90)
    Prasanna Kumar Patra and Margaret Sleeboom-Faulkner

    This chapter concerns the difficulties related to population genetic screening for sickle cell disease among tribal and rural communities in India. Sickle cell disease is a genetically inherited, commonly encountered haematological disorder that causes high degree of morbidity, mortality and fetal wastage among many Indian tribal and caste communities. Population genetic screening is a public health strategy for detecting future disease risks in individuals or their progeny, for which preventive interventions exist. When this strategy is used as public policy and is applied among marginalised rural and tribal communities, it brings about social and ethical dilemmas regarding healthcare policy choices....

  9. 5 Predictive Genetic Testing in India
    (pp. 91-108)
    Renu Saxena, Swati Sharma, Risha Nahar, Sudha Kohli, Ratna Puri and Ishwar C. Verma

    For centuries, people in India have had their hands and horoscopes inspected for a peek into their future. However, use of predictive genetic testing is of recent origin. Formal studies on the subject are few, but our experience of providing genetic counselling to several thousand families with diverse genetic disorders, and a few hundred with adultonset genetic disorders (Verma et al 2003), has given us an insight into the ethical and social issues related to predictive testing in a multiethnic and multicultural country such as India.

    Most of the conflicts that arise from predictive testing in developing countries are similar...

  10. 6 How Japanese Women Describe Their Experiences of Prenatal Testing
    (pp. 109-124)
    Azumi Tsuge

    Japan is one of the countries where ultrasound examination during pregnancy is conducted very frequently. Yet the frequency of maternal serum screening tests and/or amniocentesis in Japan is relatively low (Sagou, Okuyama & Kawane 2002). These phenomena result from historical and current socio-cultural influences, which are the subject of exploration in this chapter.

    In this chapter, I describe the reasons why pregnant women do or do not undergo prenatal testing in Japan by presenting the results of our research project on ‘Women’s Experiences of Pregnancies and Prenatal Tests’ (Tsuge, Ishiguro & Sugano 2005). In a period covering most of the last half...

  11. 7 Cultural Notions of Disability in Japan: Their Influence on Prenatal Testing
    (pp. 125-144)
    Masae Kato

    A number of socio-cultural factors influence individuals’ decision-making whether to undertake prenatal testing to check the health of a foetus, such as the price of the test and the healthcare system, as well as advice from medical professionals (Sleeboom-Faulkner 2004b). Among all these factors, this chapter focuses on the cultural concept of disabilities in Japan as an influential factor for deciding whether to undertake prenatal screening.

    Not surprisingly, different social groups and individuals have different views on disability. Looking at public debates in Japan about the pros and cons for the practice of prenatal testing, the following groups can be...

  12. 8 Genetic Tests and Insurance in Japan: The Case for a Regulatory Framework
    (pp. 145-166)
    Gerard Porter

    In contrast to the position in many advanced industrial countries, Japan lacks a specific regulatory framework to govern the ways in which insurance companies can make use of genetic test results. Whilst this situation has not yet given rise to major social or legal problems, this article nevertheless argues that the current policy vacuum is unsatisfactory. Some options for the development of an appropriate regulatory system are suggested, drawing from the recent experiences of countries such as Australia and the United Kingdom, whilst taking into account some particular features of the Japanese insurance market.

    Genetic tests can be used to...

  13. 9 Genetic Testing for Duchenne Muscular Dystrophy in China: Vulnerabilities among Chinese Families
    (pp. 167-182)
    Suli Sui and Margaret Sleeboom-Faulkner

    In China, about 650,000 affected boys suffer from Duchenne muscular dystrophy¹ (Chinese Red Cross Foundation 2005). Duchenne muscular dystrophy (DMD), the most common childhood muscular dystrophy, is a lethal X-linked genetic disorder, which affects approximately 1 in 4500 live male births (Garner-Medwin & Sharples 1989). DMD carriers pass it on to one-half of their sons – which means 50 per cent of male offspring will be affected – and one-half of their daughters, who become carriers (Harper 2004: 100). This chapter concerns the consequences of the application of genetic testing and genetic counselling on this sexlinked genetic disorder. Genetic counselling and...

  14. 10 Ramification of Choice? Ethical, Cultural and Social Dimensions of Sex Selection in China
    (pp. 183-200)
    Ole Döring

    Attempts to ‘choose’ or determine our children’s sex raise questions for cultural analysis in the area of bioethics. Beyond revealing value orientations and the situation of discourse, such choices can indicate socioeconomic conditions. symptomatic of underlying problems, such as discrimination, inequalities and structural coercion. These attempts reveal attitudes and conceptions towards ‘humanity’ and the role that technology and technique play in human life. Reflecting the social dimensions of such practice, the ethics of sex selection has to respond to the intricacies of our attempts to reconstruct practice in an ethically meaningful way, so as to be able to identify responsibilities...

  15. 11 Genetic Testing and Diet-related Disease in Asia: Preventing Diseases or Misleading Marketing?
    (pp. 201-210)
    Helen Wallace

    Major social and economic shifts in agriculture and diet have led to an intense debate about the future of food and a tension between what Lang and Heasman (2004) describe as the ‘Life Sciences Integrated Paradigm’ – reliant on the industrial-scale application of biotechnology – and the ‘Ecologically Integrated Paradigm’ – with a focus on dietary diversity and organic foods. Advocates of the ‘Life Sciences Integrated Paradigm’ commonly claim that diet-related diseases, particularly the current global epidemic of obesity and associated type 2 diabetes, can be fixed technically, by a combination of individual health screening and new food products (‘functional...

  16. 12 The Asian Genome: Racing in an Age of Pharmacogenomics
    (pp. 211-222)
    Sandra Soo-Jin Lee

    In this era after the completion of the Human Genome Project (HGP), the production of genetic information through the rise of gene mapping technologies has provoked new questions regarding current models of health, identity and choice. Much focus of such hope has been on the field of pharmacogenomics, which uses genome sequencing techniques to identify the single base pair differences called single nucleotide polymorphisms (SNPs), believed to contribute to variation in drug response among individuals. Despite the seemingly ubiquitous conclusion of the HGP that humans share over 99 per cent of their genetic material, researchers of the post-HGP era are...

  17. 13 Discussion: Predictive and Genetic Testing in Asian and International Contexts
    (pp. 223-234)
    Margaret Sleeboom-Faulkner

    This concluding chapter provides a comparative overview of themes crucial to the frameworks in which choices regarding predictive genetic testing (PGT) are made, and central to the chapters in this volume. At the same time, it views the particular practices associated with these themes, e.g. the marketing of tests by commercial companies, and testing interventions, in a critical light. The themes central to the frameworks of choice regarding predictive and genetic testing in Asia are: ‘free’ will; the therapeutic gap; the role of the state; culture and discrimination; the role of the market; and global developments and PGT. The concept...

  18. Contributors
    (pp. 235-236)
  19. Bibliography
    (pp. 237-255)
  20. Index
    (pp. 256-271)
  21. Back Matter
    (pp. 272-272)