Bioethics Program

As Mayo Clinic scientists and clinicians translate advances in genomic research into new diagnostic tools and clinical interventions, it is critical that they examine the ethical and societal questions raised by these developments. They need to reflect on appropriate ways to oversee and control biospecimen and data use to care for these resources responsibly. This allows Mayo Clinic to continue to place the best interests of the patient at the center of medical innovations.

For example:

  • 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 healthcare organizations and communities ensure that these new technologies are available in a just and fair manner?

The use of digital health tools and data from patients and study participants in genomics research raises these ethical and societal questions and many more. Clinicians and scientists in the Bioethics Program 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 consultations and education. The Bioethics Program's faculty and staff support clinicians who are adopting new forms of individualized medicine. These clinicians often seek advice to manage ethical, legal and social challenges. Bioethics experts also work with scientists, physicians and other healthcare professionals who are helping develop these new treatment options. The program works collaboratively with Mayo Clinic experts to develop creative new educational strategies. These strategies help healthcare professionals 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 uncover patients' needs in relation to genomic technologies. Research topics include:
    • Patients' potential motivations for pursuing genomic testing.
    • Patients' concerns about the use of genetic findings.
    • Potential barriers keeping patients from pursuing clinically appropriate forms of individualized medicine.
    Program researchers gather data on patients' values and priorities. They also collect information about clinicians' views on digital health innovations such as artificial intelligence tools.
  • Engaging regional communities. The Bioethics Program coordinates community engagement activities for the center. This includes community advisory boards in Phoenix, Arizona; Jacksonville, Florida; and Rochester, Minnesota. Together, these three boards make up the Mayo Clinic Center for Individualized Medicine Community Advisory Board Network. Each board within the network has approximately 20 members who 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 individualized patient care. Bioethics Program faculty members 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 2007, Mayo Clinic chose 20 citizens to represent the population of Olmsted County, Minnesota. The group took part in a deliberative community engagement event. They had in-depth conversations about biobanking and issues surrounding genetic and genomic research.

One of the group's recommendations was to have ongoing community guidance and involvement in governing 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 Mayo continues to hear and consider community voices.

To better understand regional and cultural differences, Mayo Clinic created a second community advisory board in the Jacksonville, Florida, area. This board builds 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. Sangre Por Salud is 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.