Survey Design & Analysis
Biobank Research Group
Our GOAL is to gain a better understanding and appreciation of the legal, economic, ethical, social, cultural and religious issues involving biobanks and genome research.
As such, our OBJECTIVES include 1) eliciting the views of the lay public who will be future donors of biobanks; 2) understanding issues that researchers and members of RECs face; and 3) eliciting the political, legal, and funding concerns of governmental officials and leaders of existing biobanks.
We will use qualitative and quantitative research methods to accomplish these objectives.
Our Specific Aims:
Specific Aim #1: Convene a working group meeting to 1) develop an educational tool that will be used for discussions on biobanking with stakeholders throughout the Arab Region, 2) discuss methodological approaches; and 3) develop recruitment methods for involving the different stakeholders.
Specific Aim #2. Use mixed methods research (e.g., sequential explanatory approach – quantitative followed by qualitative) involving members of the lay public and communities to elicit their views regarding aspects of biological sample donation including privacy concerns, data sharing, secondary research, commercialization and return of results.
Specific Aim #3. Conduct in-depth semi-structure interviews of researchers and members of RECs to elicit their views and concerns regarding biobank research.
Specific Aim #4: Conduct semi-structured interviews of governmental officials and directors of biobanks to ascertain their views on how best to address logistical issues with set-up, funding harmonizing regulations, and involving communities in the governance process.
The impact of our research is that key themes and viewpoints will emerge from our research that will inform policy makers in the LMICs of the Arab region and enhance further efforts at establishing biobanks and generating collaborative research.