The rules for ethical approval of studies and for obtaining informed consent also apply to genetic studies of family pedigrees and population-based samples. However, obtaining written informed consent from all members of a large pedigree (many of whom may be deceased or unaware of the collection of family data) may be difficult or impossible. Proposals for obtaining some form of group consent and for avoiding the publication of information about identifiable family members who will not give their permission have been considered. All such studies must be reviewed by an independent ethics review committee or IRB, and if the individual ...
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