The 13th World Congress of Bioethics was held in Edinburg, Scotland this year from 14 to 17 June. This conference gathered together participants from from all over the world. Many useful ethical topics and discussions fill all four conference days. I will discuss in this blog a remarkable discussion from my point of view about the tension that occurs between the Public Benefit and Respect for Research Subjects’ Autonomy regarding the reuse of human biological samples in research.
The difficulties facing researchers explaining the future uses of samples in research to potential participants when there is uncertainty what the future research will entail at the time of sample collection was widely recognized. The practice of reuse of human biological samples has generated many questions about appropriate mechanisms to maintain the privacy interests of sample donors (both as research participants and their communities), while at the same time to sustain public benefits from this reuse of samples. Many presentations in the conference discussed the appropriate mechanisms to answer these questions.
One approach discussed in the conference discussion included the use of “broad consent”, which is a flexible and autonomous way of obtaining informed consent for secondary use of biological samples in research. The research subject will be asked in advance about their preferences in case of reuse their samples (e.g., “do they need to provide permission for new research?”; “do they accept reuse of their samples and their anonymous data?”; “ do they accept reuse of their samples in genetics research?”; “do they need to be informed about the results of new research used their samples?”; “do they accept exportation of their samples outside their home countries?”)
A major question is whether a broad consent model will be a suitable practice in the Arab world regarding reuse of biological samples and for obtaining donor samples in Bio-banks. This issue needs to be explored in our communities.