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Budapest W3: Emerging Technology and Human Rights - The genetic screening of target populations

Duster, Troy (2003) The Genetic Screening of “Target” Populations. In Backdoor to Eugenics. New York: Routledge, 39–59.
Recessive disorders - where one parent is a carrier, and unless another parent with the same gene also expresses it, the chances of it being expressed are impossible

Dominant disorder - a single gene from one parent is enough for the disorder to be expressed

Tay Sachs - which led to a painful, early death for children that expressed the disease - is most prominent amongst Ashkenazi Jews. In the USA, there was a voluntary screening program set up, with widespread publicity. Hundreds of thousands of people were informed about the disease, and in Washington, 10% of the eligible Jewish population voluntarily went for screening. This led to Jewish populations in other countries to follow suit. 
Positive - many couples who had the genes were informed
Negative - caused a lot of anxiety 

Sickle Cell Anemia: when the red blood cell is less apt at carrying oxygen, and may mutate to a sickle shape, blocking vessels and causing pain and/or death. 1 in 12 African Americans express this disease. However, more than 50% of people who have it live to middle age, and some past 60. A mandatory screening process was set up, targeting school children. It became known as a "black" disease, despite the fact some Greeks were a lot more likely to express it. The tests done only showed if the children were a carrier not an expresser of the gene, which led to stigmatisation of black children. 

"To screen for a disorder that cannot be cured can tap a reservoir of latent, recurring fears about the motives of those who would prevent genetic disorders rather than treat it." p. 51

Because prenatal screening leads to a heavy bias of termination when a disorder is detected, there is obvious mistrust about why governments would target certain populations.

"The official purpose of screening is to alert individuals to their own genetic makeup so that they can take this into account in mating, or in the choice of a mate." p.52-53

Genes and environments are two massive factors that effect diseases and it is difficult to characterise disorders as one or the other. Decisions on how to fund research on disorders is massively influenced by how a disease is categorised. 

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