Reasons Why Subjects Decline to Participate in Dental Genetics Research

Objectives: Human subject research requires successful recruitment of subjects. The understanding of the reasons why a potential subject may decline to participate in research will aid researchers to have good success in recruiting human subjects. The aim of this work was to evaluate the reasons why potential subjects decline in participating in dental research that involves genetics studies. Methods: The Dental Registry and DNA Repository was established at the University of Pittsburgh School of Dental Medicine with the primary goal of serving as a major resource of clinical information for studies of dental traits. Clinical information is derived from the subjects' dental charts and a saliva sample is collected from each subject to be source of DNA. Currently, the registry has 656 participants, and 82 individuals declined to participate. Each individual that chooses not to participate in the registry is asked to provide a reason why and this information is stored in the database. Results: Among the 82 individuals that declined to participate, 44 were females and 37 males (1 unknown). Among the reasons provided for no-participation, the concern of breach of confidentiality related to the DNA sample or private medical records was given by 23 individuals. No differences were seen between males and females. Other reasons provided included: no monetary compensation (5), have a very dry mouth or did not want to spit (5), no direct benefit from the future research (2), and did not understand the purpose of the project (1). Forty-one individuals did not provide any reason for not participating. African Americans tended to decline participation in the registry more frequently, compared to Caucasians (p=0.00001). Conclusion: Concerns regarding breach of confidentiality is the main reason preventing potential subjects to get involved in genetics research. African Americans tend to refuse to participate more often than Caucasians.