Optimizing patient participation in genetic research

Genetic and medical research projects often rely on the
donation of blood or tissue samples from human subjects. Optimum recruitment of
willing participants is thereby a key consideration in research. In a
recent study published in Genome Medicine,
David Lanfear and colleagues show that the site of enrollment can influence rates of patient participation in genetic research. This finding
could inform future recruitment strategies and improve research quality.

As genetic research becomes more commonplace, a growing
concern is the relatively low numbers of patient participants compared with
non-genetic studies, which could increase the potential for selection
biases. Lanfear et al. examined a host of socio-demographic and clinical variables, in addition to site of
recruitment, to determine which factors are associated with low or high rates
of patient participation. Data were collected from 24 US-based hospitals as part
of the TRIUMPH study, a prospective registry of heart attack patients. This
analysis revealed wide variability in the rates of consent across the different
institutes. Strikingly, the site of recruitment was found to be more important
in predicting consent than factors such as patient age, gender and level of education.
Lanfear and colleagues conclude that
differences in how hospital personnel interact with patients and present
information can impact their willingness to participate.

The implications of this study are further discussed by Gert
Helgesson, in a Research Highlight published in the same issue of Genome Medicine. Helgesson touches upon
the potential for improving participation rates with better training and
standardization of enrollment processes, but also emphasizes that ethical
issues should be taken into consideration when striving for recruitment
success.

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