As advances in genomic research are translated into new diagnostic tools and clinical interventions, it is critical 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? Should the researcher share this information with you or your doctor? If so, how and when?
- Privacy and confidentiality. Who should have access to your genomic information and what types of safeguards may be needed?
- Right to know. Should parents have the right to learn about genetic risks for adult-onset diseases that their children may have? Should tests for adult-onset conditions be added to existing newborn screening programs?
- Fair distribution of medical benefits. Given the high costs of genomic sequencing, how can we 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 Biomedical Ethics 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 the larger community. The Bioethics Program coordinates community engagement activities for the center, including the Mayo Clinic Center for Individualized Medicine Community Advisory Board (CAB), a group of approximately 20 members chosen to reflect the diversity of community interests and backgrounds. Established in 2009, the CAB a group of community members chosen to reflect the diversity of community interests and backgrounds.
The initial CAB, established in 2009 in Rochester, Minnesota, assisted in creating the center's informed consent procedures. To enhance the understanding of regional and cultural differences, the CAB was subsequently expanded to Mayo Clinic's campuses in Phoenix/Scottsdale, Arizona, and Jacksonville, Florida.
The three-site CAB network seeks to inform biobank research with the diverse perspectives of different communities from across the Mayo Clinic enterprise. What fostering trust in Mayo Clinic looks like in practice might be very different in Rochester than it is in Jacksonville.
Community members have ongoing and deep conversations about the importance of diversity in Mayo Clinic engagement and ask questions such as, "Are the right people at the table to help researchers understand the impact of the project on local communities?" For example, Mayo Clinic's Sangre Por Salud (Blood for Health) collaboration with Mountain Park Health Center in Phoenix helps address underrepresentation of Latinx community members in genetic research.
Community engagement at its core is about innovating new approaches in science and reinventing how research can be done in ways that elevate the voices of the participants who make new discoveries possible.
- 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.
Your Genome Our Responsibilities
Richard Sharp, Ph.D., director, Bioethics Program