Willingness of a Multiethnic Immigrant Population to Donate Biospecimens for Research Purposes

This cross-sectional study explores the willingness to donate biospecimens for research purposes among six refugee communities in North Texas (spanning Myanmar, Central Africa, Somalia, Nepal, Arabic speaking countries, and others). Participants were asked four questions about biospecimen donation: (1) previously asked to donate, (2) ever agreed to donate, (3) willingness to donate for future research, and (4) what samples they would be willing to donate. Most participants (77%) were willing to donate biosamples for medical research; 58% were willing to donate samples. Fewer refugees from Somalia were willing to donate compared to immigrants from Myanmar, Central Africa, and Nepal (p < 0.01). Participants in the older age group (40 + years) were 3.2 times more likely to be willing for donation of biospecimens than the younger ones (OR 3.22, 95% CI 1.22, 8.55). Findings suggest refugees’ willingness to participate in biospecimen donation which support intentional inclusion of multicultural populations into medical research.

4439 Comparing the Impact of Adding an Educational Video Presentation to Universal Self-Consent for Remnant Clinical Biospecimens: A Single Blind Randomized-Control Trial

OBJECTIVES/GOALS: BURRITO is an efficient strategy that provides full disclosure in the electronic medical record of a patient’s preference in real time. BURRITO uses printed materials only to inform patients and has a <50% rates of consent. We hypothesized that adding an informational video to the printed materials would increase donations. METHODS/STUDY POPULATION: This study was IRB-approved and was considered minimal risk. The BURRITO self-consent workflow process (Soares et. al, Biopreservation and Biobanking, IN PRINT) was developed in an outpatient cardiology clinic. In the same clinic, patients were randomized to receiving printed materials only (standard procedure) or the printed materials plus a 2.5-minute informational video (intervention) while waiting for the physician in the exam room. Randomization occurred at the level of the day in clinic. Patients were blinded to the nature of the study. Following the presentation of information, the patient’s decision on consent for donation was documented in the electronic record by ancillary clinical staff. Rates of consent were analyzed by a statistician not involved in the experiment and after completion of trial. RESULTS/ANTICIPATED RESULTS: Thirty-five clinic days were randomized to either intervention (17 days) or standard (18 days), and a total of 255 patients decided during their visit to either “opt-in” or “opt-out” to donating remnant biospecimens for future research. One hundred patients opted to defer deciding (28%). No significant demographic differences were noted between the study arms. The rate of consent was 73% vs. 58% in the intervention group and the control group, respectively (p-value = 0.014). This represents an increase in the odds of consenting with an informational video by 96% (OR = 1.96, 95% CI = 1.15 to 3.34). DISCUSSION/SIGNIFICANCE OF IMPACT: This is the first randomized trial to show that an informational video with printed materials is superior for when patients are self-consenting to opt-in for clinical remnant biospecimen donation. This result adds to the evidence that the BURRITO process plus video (BURRITOv) is an effective approach for biospecimen universal consenting.

Biospecimen Donation in Biobank Construction: Aspects Affecting Donation and Publics’ Concern

Background A biobank is a storage facility which stores sample mainly for biological or medical researches. Biospecimen collection is the kind of work essential in the building of biobank. However, we found the collection works had the difficulties in the proceeding because of the low anticipation rate. Methods We here conducted a questionnaire including several questions covered several aspects in order to find out people’s attitude towards biospecimen donation. The questionnaire had 20 questions mainly focused on overall publics’ participation rates, matters that influence their participation and major publics’ concerns in biospecimen donation. Results In our survey, 1477 from 2200 distributed questionnaires were responded, and electronic questionnaires showed the highest response rate of 49.9%. In all respondents, 936 showed willingness in participation, providing a percentage of 63.4%. We found that most respondents lack the knowledge of biospecimen donation and biobanking but still have a positive attitude towards biospecimen donation. Several factors, including family disease history( p <0.05), previous donation history ( p <0.01), the knowledge of biospecimen donation ( p <0.01), the knowledge of biospecimen donation conception ( p <0.01) were closely linked to donation willingness. Among those factors, family disease history, brief knowledge about biospecimen donation were independent factors affecting donation willingness. The reverse health effects and privacy leakage were major concerns among the majority of respondents. Primary reasons affected willingness, or unwillingness donation were their benefic to public interests and privacy concerns. In summary, this survey we mainly discussed factors affecting publics’ willingness and issues people concerned most in biospecimen donation of a biobank. Conclusions Most respondents hold positive attitudes towards biospecimen donation but lack relevant knowledges. Several factors influenced donation willingness probably caused by those deficiency knowledge. Even though faced this challenge, responders’ merits of altruistic behavior may contribute to the act of donation. In addition, information leakage and health impairment remained the domain factors prevented their participation. Further works are required to eliminate those undesirable elements restrained biospecimen donation by the well biobank knowledge popularization and detailed pre-donation information exchange .