What are the current arrangements to protect the interests of the public and keep personal information private?
There are a number of ways in which the interests of the public and personal information are protected. These include regulations and laws governing the storage and use of blood spot cards, parental consent and assurance of anonymity and confidentiality. Each of these is explained in more detail below. Regulations and laws governing the storage and use of blood spot cards The storage and use of newborn blood spot cards is regulated in a number of ways, including through a Code of Practice, laws, ethics committees and scientific peer review. Strict guidance exists about who is allowed to access these blood spot cards and how the cards can be used. • Code of Practice The UK Newborn Screening Programme Centre has developed a Code of Practice to govern the storage and use of newborn blood spot cards. Under the Code of Practice, it is recommended that the cards are stored for at least 5 years for quality assurance purposes related directly to the screening programme. Cards may be stored bey
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