Research suggests that many people in the UK at risk of recessive conditions linked to consanguinity have poor or no understanding on which to make informed decisions and commonly have little or no contact with genetics services (Darr, 1999). Recent years have seen growing recognition among health and social care practitioners, service commissioners, as well as patients and the public, of the need to address this gap in service provision. Furthermore, as genetic technologies are developing quickly, there is a growing potential to offer carrier testing and pre-natal diagnosis for even very rare recessive disorders. However, the combination of (1) a highly valued social practice affecting communities that are frequently poorly served by health services and marginalised within wider society, (2) complex patterns of individual and population level risk, and (3) low levels of understanding and awareness among professionals, make this a complex and contentious area of work.
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