93 - Perspectives of donor community on the use of anonymously collected, immortalized cells to create induced pluripotent stem cells (iPSC)

Background:  There are unresolved controversies about the ethical oversight of research using anonymously collected, immortalized cells, particularly from low- and middle-income countries to create induced pluripotent stem cells (iPSC). This is particularly challenging where the samples were collected with broad consent before the advent of iPSC technology.

Methods:  In the study, we evaluated the attitudes of the Community Advisory Board (CAB) and purposively selected members of the source community of the Yoruba Resident in Ibadan (YRI) HapMap samples to the use of YRI for creating iPSCs. We conducted pre-study community consultations and distributed information sheets to facilitate participants’ comprehension of the study’s aims. We conducted Key Informant Interviews (KII) with six of the seven surviving members of the CAB and two Focus Group Discussions (FGD) with 20 members from the community. We transcribed the data and analyzed it manually to identify themes and subthemes that provide insight into our research questions.

Results:  Most participants indicated that trust in research personnel and their institutions was their most important consideration when giving opinions on the use of samples from their community for iPSC. While they generally supported broad consent and agreed that the consent given by their community members during the HapMap project was sufficient for use of the samples for other types of research, they strongly indicated need for:
(1) Continued community engagement (including the HapMap research team) before future use of their samples,
(2) Disapprove use of the samples for reproductive cloning research, and
(3) Expressed concerns about commercial use of the samples for iPSC.
Participants recommended that researchers should continuously engage donor communities and their leaders prior to use of the samples for studies like iPSC. This is because it is difficult to ascertain donors’ preferences for use of samples with technologies that did not exist at the time of donation.

Limitations: Many participants indicated insufficient knowledge of the scientific concepts in biobanking and iPSC. The research team addressed this through pre-study community consultations and engagement. While it would have been ideal to interview the original donors, this was not possible because the samples were collected anonymously. However, our study included members of the CAB who were involved in the HapMap study.

Discussion:  Our findings provide evidence of the attitude of the donor community to the use of immortalized anonymous samples collected from their community for future research including iPSC. While generally in support, community members had some reservations and suggested continued community engagement as a way of ensuring ethical oversight.