BORDERS, MIGRATION AND MEDICAL GENETICS IN BRITAIN Flashcards
THE FIRST ‘MOLECULAR DISEASE’?
SICKLE CELL ANEMIA (‘DISCOVERY’ OF HAEMOGLOBINOPATHY)
Sickle Cell Anaemia: the first ‘Molecular Disease’? 1950s and 1960s understanding
SICKLE CELL WAS STRONGLY ASSOCIATED WITH HISTORICALLY UNDESERVED AND MINORITISED POPULATIONS
Sickle Cell Anaemia: the first ‘Molecular Disease’
1950s-1960s Molecular modernity and colonial exigency (urgent need/demand)
Attention in medical journals and press focused heavily on ‘discovery’ of haemoglobinopathy genetics as symbolizing scientific progress, prowess, and modernity – not the conditions as clinical problems;
These ‘tropical’, ‘colonial’ or ‘imported’ disease deemed clinically relevant only in the colonies: ‘the time has not yet come when search for abnormal haemoglobins need be part of the routine investigation of patients with odd anaemias in this country.’ 1954 (sickle cell anaemia clinically not seen as relevant for the UK, the discovery of its mechanism only viewed relevant in terms of innovation, power, knowledge, the disease seen as area in which a research career can be successfully developed)
- (only talked about clinical implications in colonial medical journals or doctors practicing in a colonial setting)
HOW WAS SICKLE CELL ANAMIA WEAPONISED TO INTRODUCED ANTI MIGRATION POLICIES?
‘There was the problem of racial prejudice which could be exploited unscrupulously by extremist groups playing on unwarranted fears of “bad blood…”’
Parliamentary Questions, 7th May 1968, for the Minister of Health :
‘32. To ask the Minister of Health whether the genetically debilitating abnormality known as sickle cell anaemia is present in the bloodstream of the native white population of the British Isles.’
‘33. To ask the Minister of Health, what account is taken by the National Blood Transfusion Service of the risk involved in the live transfusions of blood containing some inherited abnormalities as sickle cell anaemia…’
- THERE WAS ALSO MENTION OF WARNING THE PUBLIC AND TRYING TO PREVENT RACIALLY-MIXED UNIONS BECAUSE SICKLE CELL MAY BE INHERITED BY OFFSPRING
- SHOWS FEARS OF SICKLE CELL ‘SPREADING’ TO ‘NATIVE WHITE POPULATIONS’
- SHOWS THAT AWARENESS OF A CONDITION DOESN’T MEAN UNDERSTANDING OF THAT CONDITION (BUT SOME CAN STILL WEAPONIZE IT)
- PEOPLE KNEW OF GENETICS, BUT DIDN’T UNDERSTAND IT - HAD THE OPPORTUNITY ANYWAY TO USE IT TO JUSTIFY RACIAL PREJUDICE
BLUE SKIES RESEARCH?
Blue skies research (also called blue sky science) is scientific research in domains where “real-world” applications are not immediately apparent. It has been defined as “research without a clear goal” and “curiosity-driven science”. It is sometimes used interchangeably with the term “basic research”. Proponents of this mode of science argue that unanticipated scientific breakthroughs are sometimes more valuable than the outcomes of agenda-driven research, heralding advances in genetics and stem cell biology as examples of unforeseen benefits of research that was originally seen as purely theoretical in scope. Because of the inherently uncertain return on investment, blue-sky projects are sometimes politically and commercially unpopular and tend to lose funding to research perceived as being more reliably profitable or practical.
Potential for thalassaemia research in Britain, where does the interest come from?
- INCREASING DIVERSITY OF BRITISH POPULATION IN POST COLONIALISM (1970s and 1980s)
- HIGH RATES OF THALASSAEMIA IN PEOPLE FROM GREECE, CYPRUS OR THE INDIAN SUB-CONTINENT (THERE WAS ENOUGH PATIENTS TO CONDUCT GOOD QUALITY CLINICAL STUDIES, THOSE PATIENTS WERE CULTURALLY OPEN TO COLLABORATION IN RESEARCH)
- GAVE OPPORTUNITY FOR THE UK TO BE THE LEADING FORCE IN RESEARCH ON THALASSAEMIA (UK OFTEN COMPARING ITSELF TO THE US, CLAIMING HIGHER EXPERTISE ETC)
- BECAUSE THALASSAEMIA HAS SEVERE IMPACTS, ECONOMICALLY IT IS MORE FAVOURABLE TO SCREEN FOR THE CONDITION AND PREVENT IT RATHER THAN TREAT IT (ITS IMPACTS WERE MORE PREDICTABLE AND DEVASTATING THAN THAT OF SICKLE CELL, AND THE BREKTHROUGHS IN THE AREA MORE ECONOMICALLY QUANITIFABLE, THUS MAKING IT A MORE ATTRACIVE RESEARCH AREA THAN SICKLE CELL)
- THALASSAEMIA WAS LESS POLITICISED THAN SICKLE CELL
DIVERSITY AND BIOMEDICAL INNOVATION?
- DIVERSITY DRIVES BIOMEDICAL INNOVATION
- WRKING SIDE BY SIDE WITH DIVERSE COMMUNITIES ALLOWS SCIENTISTS TO PROGRESS
‘I am writing to you about a new, unusual, and to my mind exciting development which has taken place in two immigrant community groups in London. They have decided to set up their own organisations to support the medical services which deal with two important haemoglobinopathy problems …’
Professor Eric Stroud KCH Medical School to Theodore Gang DHSS’
HOW HAS THALASSAEMIA BEEN POLITICALLY WEAPONISED AGAINST MINORITIES?
- BLAMING FAMILIES FOR GENETIC CONDITIONS
‘Children born in ethnic minority communities in Britain run a high risk of death from genetically determined illnesses because their parents are often related by blood. Some Pakistani children in Birmingham have a one-in-ten risk of death or severe illness by the age of five… Thalassaemia, a disease of the red blood cells, is commoner in Pakistanis because of the tendency in that group to marry blood relations.’
Times, September 1993
RECOGNISING OF THE ‘RACIAL’ ROOTS OF DNA PROFILING
NOTE: DNA PROFILING WAS NOT THE FIRST EXAMPLE OF MEDICALISATION OF THE BRITISH BORDER (EXAMINING TO EXCLUDE OR TO INTEGRATE IMMIGRANTS?): E.G. X RAY EXAMINATIONS, VIRGINITY TESTS, BLOOD TESTS ETC… (TO PROVIDE REASSURANCE TO THE LOCAL POPULATIONS THAT EVERYONE ENTERING THE COUNTRY IS HEALTHY)
- A NEW POWERFUL TEST THAT COULD BE PERFORMED CAME IN FORM OF DNA FINGERPRINT: DNA fingerprinting was invented in 1984 by Professor Sir Alec Jeffreys
- USED TO PROVE THAT MIGRANT FAMILIES WERE INDEED RELATED (TRIALS SHOWED THAT AROUND 90% OF TESTED FAMILIES, WHICH THE HOME OFFICE HAD ALREADY REFUSED AT LEAST ONCE, WERE GENUINELY RELATED), HOME OFFICE WASN’T SUPPORTIVE OF THIS TECHNOLOGY
MIGRANT HEALTH NEEDS, PROBLEMS?
- TO SAME EXTENT, THE NEEDS OF ETHNIC MINORITY GROUPS ARE THE SAME AS THOSE OF THE MAJORITY POPULATION
- THE SERVICES ARE FAILING TO CATER FOR THESE NEEDS FOR 2 BASIC REASONS:
1) LACK OF KNOWLEDGE OF WHAT THOSE NEED ARE, SINCE THOSE WHO HAVE RESOURCES ARE NOT IN SUFFICIENTLY CLOSE CONTACT WITH THE MINORITIES TO KOW
2) BECAUSE HAVING IDENTIFIED THE NEEDS, THE SERVICES ARE THEN NOT PRESENTED IN A WAY THAT WILL REACH THE TARGET GROUP 9PRACTICE AND PRESENTATION OF THE SERVICES NEEDS TO BE REALIGNED AND MODIFIED
UKRAINIAN MIGRATION CRISIS: WHICH DISEASE IS PARTICULARLY CONCERNING?
TUBERCULOSIS
(THRIVES IN DIRTY, COLD, OVERCROWDED, MOIST AREAS, SUCH AS WAR SHELTERS)
- NOT OFTEN EXPECTED IN EUROPE, SO OFTEN ADDRESSED VERY LATE, WHEN THE DISEASE PROGRESSED A LOT AND A LOT OF TRANSMISSIONS OCCURRED
- HARD TO GIVE REGULAR CARE IN A WARZONE
- MIGRANTS SOMETIMES DON’T REPORT FULL SYMPTOMS BECAUSE THEY FEAR BEING DENIED ENTRY ETC (STIGMA)
