As advances in genomic research are translated into new diagnostic tools and clinical interventions, it is critical that Mayo Clinic scientists and clinicians examine the ethical and societal questions raised by these developments and continue to place the best interests of the patient at the center of these medical innovations.
- Incidental findings. What if you're participating in a genomic research study and a researcher unexpectedly discovers information that might affect your health? How should the researcher share this information with you or your doctor?
- Privacy and confidentiality. Who should have access to your genomic information and what types of safeguards may be needed?
- Patient and family perspectives. How can genomic medicine help support patients and their relatives when genetic results affect family members across generations?
- Fair distribution of medical benefits. Given the high costs of genomic sequencing, how can health care organizations and communities ensure that these new technologies are available in a just and fair manner?
These are just a few of the ethics and societal issues raised by genomics. Clinicians and scientists in the Bioethics Program work to develop ethically robust strategies for integrating genomic technologies into medicine, with a focus on the best interests of the patient.
Areas of focus
- Providing ethics consultation and education. Our faculty and staff support clinicians who are adopting new forms of individualized medicine and seeking advice on the management of ethical, legal and social challenges. We also engage scientists, physicians and other health care professionals who are helping to develop these new treatment options. We work collaboratively with Mayo Clinic experts to develop innovative educational strategies to increase the clinician's ability to counsel patients about ethical and social issues associated with new forms of individualized medicine.
- Placing the needs of patients at the center of medical innovation. Researchers in the Bioethics Program conduct projects to characterize patients' needs in relation to genomic technologies, including potential motivations for pursuing genomic testing, concerns about the use of genetic findings, and potential barriers to pursuing clinically appropriate forms of individualized medicine.
- Engaging regional communities. The Bioethics Program coordinates community engagement activities for the center, including the Mayo Clinic Center for Individualized Medicine Community Advisory Board Network in Phoenix, Arizona; Jacksonville, Florida; and Rochester, Minnesota. Each board within the network is composed of approximately 20 members chosen to reflect the diversity of community interests and backgrounds.
- Providing national leadership on ethical issues in genomic medicine. The Bioethics Program is positioning Mayo Clinic as a leader in establishing ethical and socially responsible approaches to the delivery of cutting-edge novel individualized approaches to patient care. Bioethics Program faculty participate in national and regional policy initiatives to promote the responsible use of new forms of individualized medicine.
15 years and counting of individualized medicine community engagement
In September 2007, 20 citizens chosen to represent the population of Olmsted County, Minnesota, took part in a deliberative community engagement event for in-depth conversations about biobanking and issues surrounding genetic and genomic research.
One recommendation voiced by the participants was the need for ongoing community guidance and involvement in governance of the Mayo Clinic Biobank and individualized medicine research. Based on this recommendation, Mayo Clinic established an advisory board in Rochester, Minnesota, in 2009 to ensure that the voice of the community continues to be heard.
To enhance the understanding of regional and cultural differences, Mayo Clinic created a second community advisory board in the Jacksonville, Florida, area to build community ties to the Center for Individualized Medicine there.
Mayo established a third advisory board in Phoenix, Arizona, to provide guidance on the creation of the Sangre Por Salud (Blood for Health) Biobank, a collaboration among Mayo Clinic, Mountain Park Health Center and Arizona State University. Sangre Por Salud expands precision medicine research to include Latino communities, which are often underrepresented in biobanking research.