Genomics and Ethics


In 2010, the Medical College of Wisconsin utilized genome sequencing to diagnose a six-year-old boy’s mysterious digestive disease, enabling a life-saving bone marrow transplant and representing the first documented clinical application of whole exome sequencing (WES). The clinical application of WES and whole genome sequencing (WGS) will continue to grow as the technology becomes more efficient, the cost of testing decreases and the potential for WES and WGS to guide treatment and inform public health practice becomes more established.

In preparation for this increase in clinical use of sequencing, the Program of Genomics and Ethics (PGE) has been established at the Center for Bioethics and Medical Humanities at the Medical College of Wisconsin supported by the Advancing a Healthier Wisconsin Research and Education Fund. Genomic advances have raised a number of ethical questions about the impact of these advances on health and society. Issues concerning individualized use and research require the creation of new frameworks for decision-making about genomic data interpretation, return, storage and use. The PGE will bridge the gap between the clinical application of genome sequencing technologies and their ethical implications.

Program in Genomics and Ethics: Program Goals

Through the identification and development of collaborative academic and community partnerships, the PGE aims to:

  • Discover new knowledge through the conduct of innovative research on genomics and ethical issues raised by emerging genomic technologies
  • Disseminate new knowledge and best practices for addressing the ethical issues raised by new genomic technologies to key stakeholders including health care providers, researchers and the public

Acknowledgements and contact information

For more information about the Program in Genomics and Ethics, please contact PGE members: Arthur R. Derse, MD, JD; Alison La Pean-Kirschner, MS, CGC; Michael McCauley, PhD; Ryan Spellecy, PhD