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Family‐based Detection for Hereditary Hemochromatosis
Author(s) -
Reyes Michele,
Dunet Diane O.,
Isenberg Karen Bandel,
Trisolini Michael,
Wagener Diane K.
Publication year - 2008
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-007-9130-3
Subject(s) - seriousness , hereditary hemochromatosis , medicine , public health , hemochromatosis , family medicine , family history , pediatrics , psychiatry , nursing , surgery , political science , law
The purpose of this study was to examine motivators for and barriers to family‐based detection for hereditary hemochromatosis (HH). HH patients ( n = 60) and HH siblings ( n = 25) participated in one‐on‐one or group interviews. Patients and siblings understood that HH “runs in families,” but not that siblings are at higher HH risk than other family members. Patient motivators included concern for siblings’ health, seriousness of untreated HH, and doctor's encouragement to tell siblings that they need to seek diagnostic testing. Siblings were motivated by the seriousness of HH. Barriers included lack of symptoms, belief that HH was rare, and assumption that their doctor would have mentioned the risk of HH. Family‐based detection continues to be a feasible part of an overall public health strategy to promote early detection of HH. Greater awareness of HH and its potential consequences, especially among high‐risk groups, provides an additional potential avenue for public health action.