BACKGROUND: @entity64 is a @entity74 with a variable phenotype. Investigations of heritable factors in @entity74 use pedigree and genetic techniques, which pose different ethical and methodological challenges than those routinely encountered in therapeutic research. Building consensus on acceptable research practices in this field is vital to the success of multicentered collaborations. SUMMARY OF REVIEW: We review important ethical and methodological concerns related to the collection, storage, and release of pedigree research information. The @entity1 studies aspects of pedigree research are complicated methodologically because individuals can be active or passive @entity1 and pedigrees can be proband derived, partially validated, or fully validated. Current research ethics frameworks do not work well outside of a dyadic researcher-subject relationship. Privacy and confidentiality for family members must be considered in pedigree research. Investigators should anticipate potential conflicts of interest among family members when designing a pedigree research protocol. CONCLUSIONS: We propose a "proband-initiated contact" methodology in which the proband or the proband's designate allows identification of potential families without breaching the privacy of individuals in the family. In situations in which family history data are collected without direct contact between researchers and individuals in the proband's family, an Institutional Review Board may waive consent by family members after appropriate review of the protocol and application of rules for granting waivers of consent. Certificates of Confidentiality should be considered.

Ethical and methodological issues in pedigree XXXX research.

@entity1 :: ('9606', 'Species') :: ['participants', 'human'] @entity64 :: ('MESH:D020521', 'Disease') :: ['Stroke'] @entity74 :: ('MESH:D030342', 'Disease') :: ['complex genetic disorder', 'complex genetic disorders']
@entity64 :: (MESH:D020521,Disease) :: ['stroke']
