PIE Abstract, 2006

PIE Abstract (August, 2006)

Goals

The main objective of this project is to explore the feasibility of developing tools that can provide appropriate guidance in dealing with ethical questions arising in post-Human Genome Project research, in particular in the context of pharmacogenomics and personalized medicine.

The research will address the following issues:

• the role of ethics in genomics; relevant milestones in its development (HUGO/HGP); the current post-HGP and future challenges of ELSI, in particular the ethics component, in the perspective of systems-biology based, globalized genomics.
• cases of challenges to ethics: the collection of genotype and phenotype data and the issue of data sharing. Two case studies:
  • Case study #1: the Personal Genome Project (PGP) as a model case of future developments in genomics and bioinformatics. ELSI implications of innovative sequencing technologies. The ethical aspects of collecting comprehensive identifying genetic information. In search of appropriate tools and innovative ethical framework.
  • Case study #2: the Pharmacogenetics and Pharmacogenomics Knowledge Base (PharmGKB) as a model case of data collection and data sharing today. Current burning issues - extant samples and data; future further use; data sharing among researchers and with industry. Limitations of current ethical frameworks, in search of new approaches: can insights gained from case study #1 help?

Research methods

Literature-based research. Small scale empirical qualitative research.

Results

Tentative suggestions for the development of tools that can provide practical guidance in ethics-related matters to researchers in genomics, in pharmacogenomics and personalized medicine in particular.

Preparation of three scientific publications, one on case study #1 - the PGP, one on case study #2 - the PharmGKB, and one on developments in ethical theory and the feasibility of innovative models.