Genetic fieldwork for hereditary prostate cancer studies

Area of Science:

• Genetics
• Oncology
• Medical Sociology

Background:

• Successful genetic family studies require recruiting adequate numbers of unaffected relatives.
• Prostate cancer (PC) genetic studies face challenges in participant recruitment.
• Understanding family beliefs about inheritance is vital for accurate genetic counseling.

Purpose of the Study:

• To report experiences from two family studies, including a prostate cancer (PC) genetic study.
• To assess recruitment strategies and response rates in a PC genetic family study.
• To explore familial beliefs regarding PC inheritance patterns.

Main Methods:

• Contacted 949 PC patients for a genetic family study.
• Compared response rates based on contact method (health provider vs. letter).
• Conducted interviews with 20 participants to explore beliefs about PC inheritance.

Main Results:

• Achieved a 29% response rate from contacted PC patients; 44% when contacted by health providers versus 18% by letter.
• Ascertained 36 pedigrees, with an average of 3.3 affected relatives per family.
• 95% believed PC is father-to-son inheritable, but many incorrectly believed mothers or daughters could not transmit PC.

Conclusions:

• Health provider contact significantly improves recruitment for PC genetic studies.
• Misperceptions about PC inheritance, especially maternal transmission, can lead to underreporting and underestimation of risk.
• Health educators and genetic counselors must address these misperceptions to improve hereditary PC risk communication.