Involving citizens in the data bank: a case study of the China Marrow Donor Program

• In Event: Collating Publics In Collections Of Human Biological Material And Data 2

Abstract

In order for the data bank to be a valuable reservoir of genetic information, large numbers of participants need to be recruited. Participation in data bank is apparently driven by altruism and the public concern about the confidentiality of their samples. The China Marrow Donor Program(CMDP) is a non-profit organization and has enlisted 2.31 million potential HSC donors so far and enjoyed good reputation among citizens. This study explored how CMDP manage to recruit donors and how they built the trust among the participants. According to the investigation of the CMDP, we find that Voluntary Service contribute a lot to its operation. The volunteers are ordinary citizens and played an important role in many aspects of registry operation like public advocating, donor selecting, donor caring ,product transportation, and data inputting. As the deliberative informed citizens, the volunteers played an important role to establish contact between the CMDP and the donors. The CMDP held the voluntary services workshop and awarded thousands of “Five Star Volunteer” annually. The volunteers designed the voluntary services brochure to enhance the public understanding of CMDP. This study further demonstrate the ability of informed deliberative publics to provide input to institutional practice and governance of data banks. The management of CMDP represents a China characteristics but provide a effective way of enhancing the trustworthiness of databank governance internationally.
Key Words: volunteers,CMDP,trustworthiness

Author

• xiaojie li, Center for Data Science in Health and Medicine,Peking University