Program in Genomics and Ethics

Bridging the gap between the clinical application of genomic science and the ethical implications that will arise in its use

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Full Project Name:Program in Genomics and EthicsPrincipal Investigator:Arthur Derse, MD, JD, Institute for Health and EquityAward Amount:1,642,312

Award Date

October2011

Project Duration:57 months

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.

Outcomes & Lessons Learned:

• Successfully established a Program in Genomics and Ethics and initiated innovative research on ethical issues raised by emerging genomic technologies

• Disseminated new knowledge and recommendations for best practices to key stakeholders including health care providers, researchers, and the public through publication, presentations, and other discourse

• Documented convergent and divergent desires for return of genetic test results, highlighted low level of familiarity with genomic science, and further need for educational opportunities to the public

• Provided evidence and arguments justifying emphasis on informed choice, specifically regarding the return of incidental findings and parental authority in a pediatric setting

• Established research and collaborations that resulted in new frameworks for informed consent in genetic testing, detailing the importance of community engagement to avoid health care disparities, expanded scope of thinking about risk regarding genetic testing, and detailed an approach to decision-making using a "steering" metaphor (known as the "Helmsman" metaphor) as it applies in the context of genetic testing