Background: Biobanks that collect and preserve biological samples linked to demographic, phenotypic and clinical data are a critical resource for understanding factors that may affect MS outcomes. However, little is known regarding the attitudes of persons with MS about biobanking.
Objectives: This study explored attitudes of persons with MS using the newly developed Biobanking Acceptability Scale (BAS). We assessed the reliability of the BAS and predictive validity for subsequent consent and participation in biobanking.
Methods: Data for this study were obtained via surveys from persons in an ongoing longitudinal study of quality of life in persons with MS across two years. Ten BAS items were generated from the literature regarding biobanking. Each item was rated on a 5-point scale (1=Strongly Disagree; 5=Strongly Agree). Higher summated total score (range 10-50) reflected more positive attitudes toward biobanking. The sample (N=227) had a mean age of 67.7 (SD=8.9) and was mostly female (88.1%), non-Hispanic White (92.4%), married (64.7%), and had at least a high school education (88%). Almost half reported having relapsing-remitting MS and the average EDSS score was 5.74 (SD = 1.63). Descriptive statistics, Cronbachs Alpha and Pearsons bivariate correlations were used to analyze the data. Pearsons biserial correlation was used to examine the predictive power of the total BAS score to the actual biobanking participation in a subsequent year.
Results: Attitudes regarding biobanking were generally positive. Most participants viewed contributing to a biobank as a good way to help MS research (84%), wanted to know more about biobanking (83%) and would provide specimens if it was easy and could be done from home (78%). Less than half had concerns about the use (38%) or storage (32%) of their biospecimens. The majority also indicated that if asked, they would likely donate their hair (87%), saliva (85%) and blood (72%).
The 10-item BAS had a Cronbach alpha of 0.81. There were no significant relationships between demographic/MS-related variables and the total score. The total BAS score was significantly related with consent to provide biological specimens (r=0.36, p<.001) and actual donation of hair or saliva samples (r=0.24, p<.01) in the following year. Conclusions: Persons with MS in this study generally had positive attitudes toward biobanking. The BAS may be a potential screening measure to identify those most likely to donate biological samples. Future research should assess its psychometric properties in more diverse samples of persons with MS.