Program in Genomics and Ethics

Project Description Narrative:

The genome consists of DNA, the building block of human life containing all the instructions that a body needs to develop and function. In 2009, the Medical College of Wisconsin became the first to sequence the entire genome of a child for clues about the child's mysterious illness and what, if anything, could be done to correct it.

While this may have been the first documented application of genomic sequencing to clinical care, it certainly will not be the last. Clinical medicine is moving quickly toward a broader implementation of genomic sequencing as a tool for diagnosing and treating rare and previously undocumented illnesses. As genomic sequencing advances in clinical medicine, myriad ethical questions are being raised and demand thoughtful responses. These questions, such as which test results should be disclosed, to whom must results be disclosed to, what additional data generated by the sequencing should be disclosed, and how might results impact patients and their families psychologically, have no easy answers. Yet clinicians and researchers alike will need to know how to best respond to these and many other ethical questions.

Through this award, the Medical College of Wisconsin will establish a new research and education program in genomics and ethics that will aim to bridge the gap between the clinical application of this exciting new science and the ethical implications that inevitably arise.