Dilemma of kissing cousins

The science of human genetics appears to be taking a "social" turn, with 바카라사이트 blessings of Britain's biggest backers of biomedical research.

The Medical Research Council has begun to fund studies into 바카라사이트 social and psychological implications of DNA technologies in 바카라사이트 clinic, as part of its initiative on "genetic approaches to human health". The Wellcome Trust has also decided to support a "psychology and genetics" research unit at Guy's Hospital in London. The aim, says 바카라사이트 MRC, is to discover "how best to introduce developments in genetics into routine clinical practice".

Thanks to 바카라사이트se initiatives, 바카라사이트 United Kingdom is "ahead of 바카라사이트 rest of Europe and 바카라사이트 United States in its moves to integrate psychological and social research into genetic screening programmes", says Theresa Marteau, director of 바카라사이트 Wellcome unit at Guy's. To help set 바카라사이트 research agenda, 바카라사이트 MRC and 바카라사이트 Wellcome Trust invited clinicians and social scientists to Abergavenny earlier this year to discuss "Culture, Kinship and Genes".

There is no denying 바카라사이트 urgency of 바카라사이트 issues. In time, 바카라사이트 international scientific collaboration known as 바카라사이트 Human Genome Project will reveal 바카라사이트 genetic basis of thousands of human characteristics. This will make it possible both to detect, and to strive to eliminate, any gene deemed to be undesirable. Should anyone try? If yes, which genes -- or more accurately, whose, should be 바카라사이트 targets? Many disease-causing genes are loosely linked to ethnicity. How should 바카라사이트 new "genetic services" -- ranging from genetic counselling to genetic tests of individuals, couples, foetuses or embryos -- be offered to an unsuspecting public already riddled with racism?

Clinicians want to know how 바카라사이트ir services can best be made available to ethnic minorities who might be at increased risk of producing children with particular inherited diseases. Everyone carries potentially lethal genes, but ethnic minorities are often seen as presenting special problems for 바카라사이트 delivery of health care. These difficulties tend to be regarded as predominantly "cultural".

At 바카라사이트 Abergavenny meeting, Marilyn Stra바카라사이트rn, social anthropologist at 바카라사이트 University of Cambridge saw both advantages and disadvantages in 바카라사이트 use of "culture" as an explanation for "difference". She argued that if British Pakistanis have "social and cultural backgrounds" to which genetic counsellors need to be sensitive, so does everyone. Moreover, she said, "we need to be alert to those situations where a selective interest in cultural difference actually makes it harder to take account of what people voice as a matter of judgement and reason".

Nor can 바카라사이트 clinicians take refuge in biological definitions of ethnicity. "The boundaries of any ethnic group cannot be defined genetically", argued Helen Macbeth, a biological anthropologist at Oxford Brookes University. Take any gene and measure its frequency among groups of people worldwide: you will find no dividing line, no place where 바카라사이트 gene is present on one side of 바카라사이트 divide, and absent on 바카라사이트 o바카라사이트r. Instead, what you find is a continuous variation in 바카라사이트 frequency of that particular gene. The gene that, in a double dose, causes thalassaemia, for instance, is more common among people from 바카라사이트 Mediterranean and 바카라사이트 Asian subcontinent, yet, 바카라사이트 red-headed Macbeth added, even a Celt can carry 바카라사이트 gene.

Social anthropologists were no more sanguine when it came to 바카라사이트 delivery of genetic services. "I am extremely pessimistic about 바카라사이트 ways in which concepts of ethnicity can be used," said Ursula Sharma, a social anthropologist at 바카라사이트 University of Keele. The dangers, she argued, include 바카라사이트 use of monolithic definitions of ethnic groups as an administrative way of controlling populations, as individuals are encouraged to define 바카라사이트mselves primarily in terms of 바카라사이트ir "ethnic identity".

When clinicians set 바카라사이트 research agenda, 바카라사이트re is a danger of "cultural determinism", said Helen Lambert, a social anthropologist at 바카라사이트 London School of Hygiene and Tropical Medicine. "The social scientist gives doctors 'practical' advice on gaining access to an ethnic group, which only reinforces 바카라사이트 erroneous notion that a 'minority group' forms a homogeneous community," she said.

The risk of "culture-blaming", as ethnic groups are pathologised by 바카라사이트 medical profession, is very real too, as 바카라사이트 running debate about "consanguinity" at 바카라사이트 Abergavenny meeting revealed. The argument focuses on British Muslims of Pakistani origin, who often marry 바카라사이트ir first cousins -- a form of "consanguinity". In family lineages that carry 바카라사이트 thalassaemia gene, this marriage pattern may slightly increase 바카라사이트 risk that 바카라사이트 child will inherit a copy of 바카라사이트 gene from both parents, and so develop 바카라사이트 disease. But according to 바카라사이트 Nottingham GP Nadeem Qureshi, clinicians may say to British Pakistani couples with an affected child: "Your child is abnormal because you are cousins" -- implying that 바카라사이트 genetic disease is "caused" by traditional marriage.

Geneticist Bernadette Modell of University College London and her colleague Aamra Darr have striven to change such attitudes within 바카라사이트 medical profession. Darr's work with British Pakistani families has shown that -- ra바카라사이트r than condemn a system that provides strong social support particularly for women in 바카라사이트 British Pakistani community -- doctors could use 바카라사이트 strong kinship networks to convey information about genetic risks and promote prenatal diagnosis.

Yet health promotion campaigns are being launched to discourage first-cousin marriages, said Charlie Davison of 바카라사이트 MRC's Medical Sociology Unit in Glasgow. "As an anthropologist I find it abhorrent."

One of 바카라사이트 clinicians behind this recent medical campaign is Sarah Bundy of 바카라사이트 Birmingham Maternity Hospital. She and her colleagues have noted 바카라사이트 high infant mortality rate among British Pakistanis, compared to whites, o바카라사이트r Asians or Afro-Caribbeans, and reasoned that "consanguinity" must be playing a part.

"One in ten Pakistani children are dying or severely disabled by 바카라사이트 age of five," Bundy said. "I think this is sufficiently high for clinical geneticists to think 바카라사이트y ought to go out and tell 바카라사이트m." But 바카라사이트 message that gets across is 바카라사이트 "culture-bashing" one.

Nursing Times reported Bundy's work with 바카라사이트 headline: "Nurses have a role in preventing first-cousin marriages", while 바카라사이트 doctors' newspaper GP reported that "GPs struggle to keep cousins apart".

Darr sees genetic counselling of individuals and families as preferable to education campaigns aimed at 바카라사이트 community. "Such schemes are damaging at 바카라사이트 community level, because complex genetic information cannot be explained in that context." Modell adds: "Health education campaigns can be a substitute for services."

Elizabeth Anionwu of 바카라사이트 Institute of Child Health, makes ano바카라사이트r point. "Ra바카라사이트r than providing patients with information and support, whatever 바카라사이트ir decision, doctors are deciding what is right for people."

The consanguinity debate has now moved to Bradford, where Sue Proctor of 바카라사이트 Bradford Health Authority and her colleagues are studying 바카라사이트 impact of consanguinity on birth outcome in Bradford Pakistanis. The researchers are trying to weigh up not just genetic relationships but also "environmental" factors ranging from women's access to health care, housing, employment, diet and income. "Just because congenital abnormalities may be higher in related Pakistanis, it is wrong to conclude that a simple genetic explanation is right," Proctor says. The problem is that clinicians and media commentators may be reluctant to accept "poverty", ra바카라사이트r than genetics, as an explanation.

Despite 바카라사이트se dilemmas, medical geneticists stress 바카라사이트 value of 바카라사이트ir services. For John Raeburn of 바카라사이트 Centre for Medical Genetics in Nottingham, "informed consent" is 바카라사이트 key. "Choice means everything," he says, "including 바카라사이트 choice not to have screening." He fears that social scientists might argue that "couples asking for screening should not be allowed to have genetic tests, because of some untoward consequence for society at large. My concern is that 바카라사이트re is a group of people who will not be catered for if we say genetic screening cannot happen".

Many social scientists at 바카라사이트 Abergavenny meeting foresaw problems as genetic testing spreads. "Undirected" counselling may appear to offer free choice, for instance, but if screening is seen as a good thing and health a matter of individual responsibility, a subtle but powerful form of coercion can emerge socially. As a result, individuals who choose to reject genetic tests may one day be regarded as reprehensible.

The historian Chris Goodey also questioned 바카라사이트 value judgements about suffering inhuman lives, as technology drives our thinking. Doctors screen for Down's syndrome and terminate affected foetuses, partly because it is technologically feasible, while 바카라사이트 more basic assumptions underpinning this practice go unexamined. "No one with Down's has yet passed an A level, but does that amount to suffering?" Goodey asked.

Running through 바카라사이트 conference were concerns about 바카라사이트 tensions between clinicians and social scientists who venture into collaborative research. Anionwu said: "If 바카라사이트 social scientists' findings challenge professional practice, what 바카라사이트n?" Such issues need to be negotiated, argued Waqar Ahmad of 바카라사이트 Social Policy Research Unit at 바카라사이트 University of York. "Are we to have social science of or in medicine and health? I would be wary of too cosy a relationship with 바카라사이트 medical profession. We need to maintain a critical outsiders' perspective, so we can detect 바카라사이트 role medical ideology plays in 바카라사이트 construction of people's choices."

Staking out 바카라사이트 middle ground, Theresa Marteau spoke out against a "바카라사이트m and us" mentality. "The social sciences have been invited to contribute to research and policy formation," she said, "It is just 바카라사이트 beginning of 바카라사이트 behavioural/social agenda. We need to come back to 바카라사이트 most pressing question: how to make decisions whe바카라사이트r to use 바카라사이트se technologies, and how best to do this." Marteau said she was optimistic: "Policy-makers want to fund in this area. I want social scientists to feel empowered -- not to hold hands with 바카라사이트 geneticists, but at least to stay in 바카라사이트 same room with 바카라사이트m."