Abstract
BackgroundLarge-scale population biobanks are critical for future research integrating epidemiology, genetic, biomarker and other factors. Little is known about the factors influencing participation in biobanks. This study compares the characteristics of biobank participants with those of non-participants, among members of an existing cohort study.MethodsIndividuals aged 45 and over participating in The 45 and Up Study and living ≤20km from central Wagga Wagga, New South Wales (NSW), Australia (rural/regional area) or ≤10km from central Parramatta, NSW (urban area) (n=2340) were invited to join a biobank, giving a blood sample and having additional measures taken, including height, weight, waist circumference, heart rate and blood pressure.ResultsThe overall uptake of the invitation to participate was 33% (762/2340). The response rate was 41% (410/1002) among participants resident in the regional area, and 26% (352/1338) among those resident in the urban area. Characteristics associated with significantly decreased participation were being aged 80 and over versus being aged 45–64 (participation rate ratio: RR = 0.45, 95%CI 0.34-0.60), not being born in Australia versus being born in Australia (0.69, 0.59-0.81), having versus not having a major disability (0.54, 0.38-0.76), having full-time caregiving responsibilities versus not being a full-time carer (0.62, 0.42-0.93) and being a current smoker versus never having smoked (0.66, 0.50-0.89). Factors associated with increased participation were being in part-time work versus not being in paid work (1.24, 1.07-1.44) and having an annual household income of ≥$50,000 versus <$20,000 (1.50, 1.26-1.80).ConclusionsA range of socio-economic, health and lifestyle factors are associated with biobank participation among members of an existing cohort study, with factors relating to health-seeking behaviours and access difficulties or time limitations being particularly important. If more widespread participation in biobanking is desired, particularly to ensure sufficient numbers among those most affected by these issues, specific efforts may be required to increase participation in certain groups such as migrants, the elderly, and those in poor health. Whilst caution should be exercised when generalising estimates of absolute prevalence from biobanks, estimates for many internal comparisons are likely to remain valid.
Highlights
Large-scale population biobanks are critical for future research integrating epidemiology, genetic, biomarker and other factors
This study investigates the relation of demographic, lifestyle and other personal characteristics, to participation in a biobank among members of an existing cohort study
No significant variation in response rate was observed according to sex, distance from collection site, time since joining the baseline 45 and Up Study and body mass index
Summary
Large-scale population biobanks are critical for future research integrating epidemiology, genetic, biomarker and other factors. This study compares the characteristics of biobank participants with those of non-participants, among members of an existing cohort study. Researchers have sought to integrate genetic and other biomarker data with epidemiological data by obtaining biospecimens from participants in large-scale cohort studies. Participation rates in biobank studies vary considerably [1,2,3,4,5,6,7,8] and are generally lower than for non-biomarker oriented research [2]. Despite its implications for prevalence estimates and other aspects of biobank metholodogy, how participation relates to broader demographic, health and lifestyle factors is not known. This study investigates the relation of demographic, lifestyle and other personal characteristics, to participation in a biobank among members of an existing cohort study
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