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Paper short abstract:

Here, I explore tensions between public health policies intended to integrate and assimilate 'ethnic' immigrants, elite research programmes exploring their bodily diversity, and a health service struggling to address the needs of emerging ethnic communities within a remit of service to the majority.

Paper long abstract:

The exigencies of post war Britain brought together new populations and equally new understandings of disease and models of healthcare. This paper will explore the tension between public health policies intended to integrate and assimilate 'ethnic' immigrants; elite research programmes exploring their medical and especially genetic diversity; and a National Health Service struggling to assess and address the needs of emerging ethnic communities within a remit of service to the wider majority. I will focus on the ways in which clinical, community and biomedical responses to the thalassaemias -- a group of genetic blood disorders closely linked to South Asian and Mediterranean ethnicities -- exemplify the processes by which all participants in the medical encounter understood and negotiated these tensions.

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Paper short abstract:

Sickle cell anaemia is an autosomal recessive heamoglobinopathy and associated painful crises are the most common cause of morbidity causing up to 90 % of sickle-related hospital admissions. The author analyses four cross-cultural approaches to management, based on a number best practice visits.

Paper long abstract:

Across the world painful crises are the most common cause of acute morbidity and accounts for 80-90% of sickle cell related hospital admissions(Ware et al 1999). The provision of services within UK hospitals and emergency departments has however, often been the source of much criticism by both patients as well as support groups relating to gross stigmatization, lengthy delays in analgesic delivery, discrimination, resource allocation and general lack of awareness during crisis (Maxwell and Streetly 1998, Anionwu and Atkin 2001). The author aims to present cross cultural differences and challenges in care and management options available that we can all learn from based on a number of home and overseas best practice visits from the world renowned University of West Indies, Jamaica, Instituto de Hematologia, Cuba, and the St Jude's Research Hospital, USA. Here in the UK, we all may well be aware that sickle cell anaemia is genetically inherited. However, in Jamaica health professionals have to be much more sensitive to sufferers who still believe that it is instead caught by stepping over 'bad roots' and hold their faith in traditional witchcraft medicine of 'Obea' rather than conventional medicine and the unfamiliarity of genetic testing.

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UK clinical/scientific staff views on social, clinical and ethical dilemmas regarding genetic technologies for foetal testing vs. preimplantation diagnosis, eg termination of pregnancy vs. discarding embryos after diagnosis of abnormality; conceptions of humanness, life and death.

Paper long abstract:

In the UK, the Human Fertilisation and Embryology Authority (HFEA) is responsible for licensing preimplantation genetic diagnosis (PGD). To date licences have been issued for the testing of about fifty genetic conditions. One of the ethical principles used by the HFEA in approving licences is that indications for the use of PGD should be consistent with, although not necessarily the same as, current practice in the use of prenatal diagnosis (PND). However, the ways in which people understand, value, negotiate and use genetic technologies in relation to PND differ from those in relation to preimplantation testing of embryos.

This paper reports on one aspect of a study exploring the views and experiences of practitioners and scientists on social, ethical and clinical dilemmas encountered when working in the area of PGD for serious genetic disorders. The study is producing an ethnography based on observation, interviews and ethics discussion groups with staff from two PGD/IVF Units in the UK. In this paper we focus on staff perceptions and experiences of working with embryos and helping women/couples to make choices that will result in selecting embryos for transfer and discarding 'affected' embryos, compared to their views about decisions made after PND to terminate affected pregnancies. For example, some staff have expressed their discomfort with the termination of pregnancies following PND, whereas they describe three day old embryos as 'a ball of cells'; whilst others view embryos as a form of life and regard the process of allowing those not selected for transfer to perish as undergoing a form of death.

The findings have implications for wider debates about how new genetic developments and technologies, and related clinical and social practices, match with changes in conceptions of humanness, what it means to be alive, and death.

Acknowledgements: This research is funded by The Wellcome Trust Biomedical Ethics Programme (Grant No: 074935)

By: Kathryn Ehrich, Clare Williams, Peter Braude, Bobbie Farsides, Jane Sandall, Rosamund Scott.

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Paper short abstract:

Does the new genetics reduce identity to biology? I show how genetic medicine shifts between essentialising biology and cultural repertoires that refigure persons as more than the sum of biological parts. As it reduces bodies to bio-objects, gene medicine rescues people from such a reduction.

Paper long abstract:

Currently, there is fierce debate over whether genetic medicine is reducing the identity of persons to the effect of their (increasingly complex) biology. In the paper that follows I show how there would be no point in a gene medicine that was only concerned with persons as biologically determined: gene medicine would have no power if it did not also reaffirm the human as of a higher order than mere substance. I show how genetic medicine, in all its hybridity, reperforms the clinic as at the 'pinnacle' of the human, not the biological, or newly fashioned, 'life' sciences (Foucault 1976). My argument is grounded in an ethnography of dysmorphology, an emergent field of genetic medicine concerned with the study of abnormal forms and the identification of 'syndromes'. The subjects of dysmorphology are mainly babies and children, and their families. The study tracked dysmorphology through its emergence as a relatively young specialism and through all aspects of the processes and practices that go to make it up as a distinctive clinical field. Dysmorphology process distinguishes the normal from the abnormal and the genetic from the non-genetic by drawing classic medical processes of diagnosis, discourses of child development together with methods of genetic profiling, including the use of molecular tests. Critically, dysmorphology conflates appearance and essence one moment, and then separates it the next. In the paper, I draw upon Marilyn Strathern's understandings of how persons emerge as an effect of relations between parts and wholes, to show how dysmorphology's subjects are produced as both distinctive, and individual, as well 'part of a family line' or as 'of a kind'. In particular, I show how genetic medicine shifts people between processes of objectification that essentialise their biology to include them in a category that figures them as 'of a kind', or as a part of a family line; and cultural repertoires that refigure them as individual and distinctive, made up of much more than their biological parts. One moment, then, clinical practices constitute the individual body as a part of, or as different from, the body of the family. Here the body of an individual or of a family is performed as a phenotype and as the appearance, or 'expression' of a genotype. Within this perspective genotypes emerge as ' wholes' that are made up of parts coming from different combinations of genes, including genetic accidents. The next moment cultural repertoires are brought into play that refigure people as much more than the sum of their embodied, including inherited, parts. That is, at the very moment it reduces the body to an object, gene medicine rescues the genetically aberrant from the totalising effect of such a reduction. It is this humanism that helps provide temporary and precarious shelter from stigma for parents and children affected by genetic disorders, as well as helps revive medical dominance.

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Paper short abstract:

Recent results in psychiatry, neurosciences and genetics, have shown the existence of a genetic predisposition to suicidal behaviour. How can this fact be accommodated within a social-anthropological approach to suicide?

Paper long abstract:

Recent results in psychiatry, neurosciences, and genetics, have shown the existence of a genetic predisposition to suicidal behaviour. How can this fact be accommodated within a social-anthropological approach to suicide? Based on a critical review of anthropological theories of suicide, on cross-cultural data, and on direct observations spanning more than twenty years of fieldwork amongst a suicide-prone community located in Palawan island, Philippines, I will discuss a new hypothesis accounting for this phenomenon taking into consideration genetic as well as non-genetic factors. This study may lead to reassess the object of anthropological studies and the very notion of culture.

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Paper short abstract:

This paper discusses several families whose children have genetic disorders. It discusses two terms, daktari (biomedical) and upri (spirit-related), which British Bangladeshis use to understand health problems and explains how these influence the families’ approaches to helping their children.

Paper long abstract:

This paper derives from an ESRC-funded research project in which I am doing ethnographic research with a number of British Bangladeshi families who have children with genetic disorders or who have been told that they are themselves carriers for genetic disorders. The families are in Birmingham and Cardiff. In this paper I look at how families who are coping with one or more children with genetic disorders understand their children's problems and what kinds of assistance they see as appropriate for their children. The children have been diagnosed as having a variety of different disorders, including XP (xeroderma pigmentosum), Angelman's Syndrome, TS (tuberous sclerosis), Cockayne's syndrome, carnitine deficiency, thalassemia and Bardet-Biedl Syndrome.

Two commonly used categories are daktari and upri. Daktari comes from the word for "doctor" and implies problems that can be dealt with in biomedical terms. Upri and najar refer, more or less, to problems that cannot be understood and cured by biomedicine. These imply the activity of spirits (jinn, etc) or other 'supernatural' agencies and can be countered, if at all, by specialists who know how to deal with these problems and who use methods deriving from Islam or from Bangladeshi folk practices. These specialists may be imams (Muslim clerics) but may also be lay people. Other remedies may include use of empowered water and empowered oil, or taking the child to visit a Sufi shrine in Bangladesh or India. Some families also take their children on a pilgrimage to Kabah (in Mecca) known as umrah.

In practice, however, there is no sharp dividing line between daktari and upri problems, and families will use a combination of ways of understanding and attempting to remedy their children's condition.

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Paper short abstract:

This paper draws on work with British Pakistanis attending a genetics clinic. Clinicians establish genetic risks for health problems. Diagnosis and mutation research is often uncertain. Clients seek cures more than risk assessments and may pursue alternative explanations/treatments.

Paper long abstract:

Enrolment in genetics clinics is now part of the routine surveillance of infertility, birth anomaly and childhood and adult illness. In western biomedicine, a 'genetic' diagnosis is rooted in DNA and is in this sense immutable, despite claims about the prospects for gene therapy, and has implications for the health and reproductive futures of the affected individual and their close kin. Work in clinical genetics involves diagnosis and identifying health and reproductive risks for individuals and families. Lippman describes the assigning of an underlying genetic cause to problems with reproduction and health as 'geneticization' (1993); Rose and Novas suggest the enrolment in these processes is re-shaping the public consciousness of illness-causality, risk and responsibility to others (2005)

This paper draws on Wellcome Trust-funded fieldwork with British Pakistanis attending a genetics clinic in the UK. British Pakistanis have been identified as at elevated risk of recessive genetic disorders because of the practice of consanguineous marriage, a finding that has generated considerable policy debate. Most referrals in this study's sample of 69 families concerned rare recessive or 'probably recessive' disorders. This paper explores the degrees and limits of both clinicians' and clients' engagements in genetic diagnosis and risk assessment.

Clinicians are professionally committed to investigating a possible genetic aetiology for reproductive and health problems and estimating reproductive risks, but diagnostic processes are frequently marked by uncertainty, especially for rare recessive disorders. Genetic research, will, in theory, enable more accurate risk assessment, but enrolment in research raises complex issues of research interest and client consent, and may conflict with what clinicians regard as useful clinically for clients.

Clients' referral to clinical genetics is routine, but client engagement in clinical genetic processes is usually motivated more by a desire for treatment or cure than for risk assessment. Clinical diagnostic uncertainty may be mediated by a family's hopes regarding research, gene discovery, therapy and cure, but it also constitutes grounds for scepticism and uncertainty about genetic research. All of those enrolled via their DNA samples in genetic research had considered and sometimes actively pursued alternative explanations and treatments for their problems, although individuals differed in their views of the reliability of genetic science versus other systems of knowledge.

By identifying two slightly different agendas at work in how clients and how clinicians participate in genetic diagnostic processes, both of which contain elements of ambivalence, the paper questions straightforward assertions about how 'geneticization' occurs through clinical engagement. Nevertheless, a degree of co-operation and co-participation in clinical processes and in genetic research is necessary for the pursuit of these rather different goals.

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Paper short abstract:

The main aim of this study is to contribute new knowledge on genetic counselling and on how genetic information and knowledge is understood and handled among Norwegian Pakistanis.

Paper long abstract:

Keywords: Genetic counselling (general and prenatal), inherited disorders/diseases, Pakistanis, kinship, consanguinity.

This presentation draws from an anthropological study of genetic counselling (genetic risk information) and knowledge about genetic risks among the Pakistani population in Norway. Most couples who receive genetic counselling already have one or more children with genetic disorders. National and international epidemiological research shows that first cousin marriages increase the risk of having children with recessively inherited genetic disorders, and the risk of infant mortality and morbidity, and the Pakistanis have long traditions of marrying inside the extended family group both in Pakistan and Norway. The total Pakistani population in Norway is about 28,000 (first and second generation) and it is thus the largest non-Western immigrant group.

Firstly, this presentation explores families' opportunities to get access to genetic information, their beliefs and understanding, and the challenges and dilemmas the information about risk may give.

Secondly, the presentation focuses on the different ways Pakistanis in Norway respond to and deal with the genetic knowledge; in other words, whether this knowledge has any impact or not on their lives.

The methods used are anthropological fieldwork with observation in clinical meetings, interviews with both the clinicians and the couples, a follow-up of the couples and their families in their decision-making processes, study of medical documents and interviews with Pakistanis with different backgrounds (engaged in politics, organisations, religious affairs, health etc.).

The main aim is to contribute with new knowledge about genetic counselling and how the genetic information and knowledge is understood and handled among the Norwegian Pakistanis. The main study is funded by the Research Council of Norway for three years from 2005.The Directorate of Health and Social Welfare and the Eastern Norway Regional Health Authority gave grants for a short period in 2004.