Negotiating Risk

Negotiating Risk: British Pakistani Experiences of Genetics

Alison Shaw
Copyright Date: 2009
Edition: NED - New edition, 1
Published by: Berghahn Books
Pages: 320
https://www.jstor.org/stable/j.ctt9qckq9
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  • Book Info
    Negotiating Risk
    Book Description:

    Drawing on fieldwork with British Pakistani clients of a UK genetics service, this book explores the personal and social implications of a 'genetic diagnosis'. Through case material and comparative discussion, the book identifies practical ethical dilemmas raised by new genetic knowledge and shows how, while being shaped by culture, these issues also cross-cut differences of culture, religion and ethnicity. The book also demonstrates how identifying a population-level elevated 'risk' of genetic disorders in an ethnic minority population can reinforce existing social divisions and cultural stereotypes. The book addresses questions about the relationship between genetic risk and clinical practice that will be relevant to health workers and policy makers.

    eISBN: 978-1-84545-887-4
    Subjects: Anthropology, Sociology, Political Science

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. LIST OF FIGURES
    (pp. ix-ix)
  4. ACKNOWLEDGEMENTS
    (pp. x-x)
  5. INTRODUCTION EXPLORING GENETIC RISK
    (pp. 1-36)

    In 2003, I received an enquiry from a British Muslim woman, Khadija, living in the north of England, whose daughter had fallen in love with a first cousin while on holiday in India visiting her mother’s sister’s family. The daughter now wanted to marry this cousin, but her father, Khadija’s husband, objected strongly because of the genetic risks; as a professional in education, he was aware that rates of learning disability are higher among British Pakistanis than other ethnic groups and that research suggests ‘consanguineous’ marriage or marriage between people ‘of the same blood’, usually second or first cousins, explains...

  6. CHAPTER 1 MEDICAL AND PUBLIC PERCEPTIONS OF CONSANGUINEOUS MARRIAGE AND GENETIC RISK
    (pp. 37-62)

    ‘Is marrying your first cousin just too dangerous?’ a prime-time BBC television ‘Newsnight’ report asked viewers on 16 November 2005. The report then stated that, while ‘most people would find the idea of marrying a first cousin shocking’, ‘at least 55 per cent of British Pakistanis are married to first cousins’ and these marriages carry a risk of ‘some rare but very serious illnesses’. It went on to produce some striking figures: British Pakistanis are thirteen times more likely to have children with genetic problems than the general population and, according to one Bradford paediatrician, 140 different recessive conditions have...

  7. CHAPTER 2 CLOSE KIN MARRIAGES: SOME ANTHROPOLOGICAL THEORY AND EUROPEAN HISTORY
    (pp. 63-88)

    In Hosseini’s novel about 1970s Afghanistan, when the narrator describes his household servant’s marriage to a Shi’a Muslim ethnic Hazara woman, he adds that she is ‘also his first cousin and therefore a natural choice for a spouse’ (Hosseini 2003: 7). The use of the word ‘natural’ is telling, because, in many parts of the world besides Afghanistan, a first cousin is indeed considered a natural choice of marriage partner. Marriages between first cousins and other consanguineous kin account for between 20 and 55 per cent of marriages across the geographical region of the southern and eastern borders of the...

  8. CHAPTER 3 BRITISH PAKISTANI COUSIN MARRIAGES: BALANCING MARITAL RISKS
    (pp. 89-110)

    Husnain is a twenty-six-year-old British law graduate who describes himself as a ‘second-generation Pakistani’. He has lived in England since he was four years old. Commenting on his marriage to a first cousin from Pakistan, he told me: ‘Marrying within the family is the normal thing to do. It’s a cultural issue. I don’t think the medical issue even crosses our people’s minds. It certainly didn’t concern me. You just assume you will marry a cousin. That’s what I did. It is the natural thing to do.’ Yet, like many other young adults, he was also acutely aware that this...

  9. CHAPTER 4 MEDICAL SURVEILLANCE AND DIAGNOSTIC UNCERTAINTY
    (pp. 111-138)

    Sofia Ali, twenty-six years old and raised in Azad Kashmir, has been living in England for seven years since joining her British-born and raised husband. As is typical in families in which intermarriage has been practised for generations, her husband is related to her in several ways: as her mother’s brother’s son (first cousin), as her father’s brother’s daughter’s son, and as her father’s sister’s son’s son (her husband’s parents are first cousins). For Sofia, the U.K. provisions of antenatal care and hospitalised births contrasted with the limited services available in rural Pakistan and Azad Kashmir (and their availability only...

  10. CHAPTER 5 RESPONDING TO REPRODUCTIVE RISK
    (pp. 139-166)

    Providing information about reproductive risk is one aspect of the diagnostic work performed in clinical genetics. Couples attending genetics clinics because their baby or child has a problem presumed to be genetic, or because of a family history of a genetic condition, usually receive an assessment of the chances that any future children they have will also have the condition, an assessment that will vary according to the inheritance pattern of the condition and the level of certainty attached to the clinical diagnosis. Doctors giving reproductive risk assessments usually also discuss with patients the implications for the management of another...

  11. CHAPTER 6 FORETELLING AND MANAGING INFANT DEATH
    (pp. 167-200)

    During my fieldwork, infant death emerged as a central concern for some parents. Certain rare recessive disorders have lethal effects, resulting in pregnancy loss, early infant death or shortened life expectancy. Ten of the couples recruited to this study lost eighteen babies between them as stillbirths, neonatally (soon after birth) or during the first year of life; this excludes miscarriages, which some women had experienced repeatedly. In all but one or two cases, the identified cause was a lethal recessive condition, reflecting national findings that attribute part of the excess infant mortality among British Pakistanis to lethal recessives. Five couples...

  12. CHAPTER 7 GENETIC SCREENING AND THE EXTENDED FAMILY
    (pp. 201-228)

    A unique feature of a genetic diagnosis is the precise ways in which it implicates the affected person’s close biological relatives. Genetic material–by which, here, I mean nuclear DNA, located in every cell of the body–is transferred in equal amounts via the gametes (the mother’s egg and the father’s sperm) to a child. From this, the extent of shared DNA in relationships between biological relatives can be calculated. Parents each contribute half their genetic material to a child, so an individual shares 50 per cent of their DNA with each biological parent and sibling (their ‘first-degree’ relatives), 25...

  13. CHAPTER 8 GENETIC RISK IN CONTEXT
    (pp. 229-252)

    Five years after her referral to clinical genetics, Zobeen’s case remains in the category of unknown conditions, despite the clinician’s hunch that her problems are chromosomal and repeating the chromosome test with a new, more sensitive technique. Zobeen’s blood sample has now been sent to a U.K. research group investigating the genes that may be implicated in one of her problems, but the flurry of medical activity that surrounded Zobeen’s first eighteen months has quietened and her parents’ anxieties about the causes and management of her problems now largely belong to the past. The birth of three other unaffected children...

  14. BIBLIOGRAPHY
    (pp. 253-274)
  15. INDEX
    (pp. 275-284)