Genetic Registers: Problems Old and New

Over the last 20 years or so there has been a growing realisation among professionals of the need to maintain accurate records of families with genetic disease. This idea is not new, in fact Joseph Adams (1756–1818) wrote in 1814: That to lessen anxiety, as well as from a regard to the moral principle, family peculiarities, instead of being carefully concealed should be accurately traced and faithfully recorded, with a delicacy suited to the subject, and with a discrimination adopted to the only purpose for which such registers can be useful (Adams, 1814).