Genetic fieldwork for hereditary prostate cancer studies

The success of a genetic family study depends on the recruitment of a sufficient number of unaffected family members. We present our experiences from interviews performed in two family studies, a genetic family study of prostate cancer (PC) and a medical, anthropological, qualitative study. In the genetic family study, 949 PC patients were contacted, and 29% responded. Response rates were higher (44%) among subjects contacted by health providers participating in the study, compared to only 18% of those contacted by letter. Thirty-six pedigrees were ascertained. On average, each family had 3.3 affected relatives. Average age at time of diagnosis was 61.9 years in the probands. 58% of the families reported additional cancers. Breast cancer was reported in 12 families; colon cancer was the second most reported cancer, followed by lung, stomach, and throat cancers. Beliefs about the inheritance of PC were explored with 20 participants. The parental origin of the proband's PC in each family did not significantly affect participants' beliefs about the inheritance of PC. 95% agreed that PC could be inherited from a father to a son. Participants thought that a mother (n=12) or daughter of a patient (n=11) could not give PC to their sons. This misperception of the inheritance of PC can result in (1) an underreporting of PC cases in a kindred, and (2) healthy men underestimating their risk of developing PC when the disease runs in the mother's family. Thus health educators and genetic counselors might consider these findings when teaching patients and their relatives about hereditary PC.