Research Summary
I am a medical anthropologist who works in biomedical ethics with a focus on emerging genetic/genomic technologies. Throughout my career, I have pioneered bioethics research that uses empirical data to inform policy analysis and clinical practice. Previously, I directed two biomedical ethics centers (at Stanford University School of Medicine and the Mayo Clinic in Rochester, MN). Currently I am a UCSF faculty member and Joint PI of an NIH-funded P20 “Center of Excellence” in ethical, legal, and social implications (ELSI) research that focuses on the translation of genomic technologies into clinical and public health practice.
As Co-I of the NIH-funded EngageUC project, I led the design of bilingual deliberative community engagement events about biobanking policy with citizens in northern and southern California. While director of bioethics at the Mayo Clinic, I led the community engagement activities that developed governance practices currently in effect for the Mayo Clinic Biobank and for the Rochester Epidemiology Project, an NIH-funded (for over 4 decades), population-based resource that includes identifiable data.
I also lead or participate in ELSI research focused on newborn screening policy. I am Joint-PI of the NICHD-funded NSIGHT project that examines the use of whole genome sequencing technologies in newborns. I am Co-I of an AHRQ R21 that seeks advice from Californians on newborn screening policy using deliberative democracy, working in collaboration with the CA Dept. of Public Health. I am also the PI of a directly relevant NCI-funded R01 studying return of unexpected genetic results to the family members of deceased participants in a cancer biobank linking biospecimens to personal health information. I co-edited a special issue of the Journal of Law, Medicine, and Ethics, to be published in September 2015, that reports our policy recommendations. With funding from the NHGRI-funded eMERGE Consortium, I conducted empirical research demonstrating the difficulties of obtaining authentic informed consent.
I was invited to participate as “ethics lead” for the PCORI-funded Athena Breast Health Network’s WISDOM clinical trial of risk-based breast cancer screening. With “Creative Commons,” I recently convened a Robert Wood Johnson Foundation-sponsored policy development workshop to create guidelines for balancing privacy and sharing in “Big Data” projects. I previously served on the DHHS “Secretary's Advisory Committee on Genetic Testing,” a group charged with making recommendations about federal oversight of testing in the US. In addition, a focus on the ethics of using racial categories in genomics research has informed all aspects of my research agenda.
Research Funding
August 4, 2017 - May 31, 2022 - Genomic sequencing to aid diagnosis in pediatric and prenatal practice: Examining clinical utility, ethical implications, payer coverage, and data integration in a diverse population. , Principal Investigator . Sponsor: NIH, Sponsor Award ID: U01HG009599
January 12, 2017 - December 31, 2021 - Precision Genomics in the WISDOM Pragmatic Clinical Trial: An Embedded ELSI Study of Risk-based Breast Cancer Screening , Principal Investigator . Sponsor: NIH, Sponsor Award ID: R01CA211999
September 5, 2013 - August 31, 2019 - Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn Screening , Principal Investigator . Sponsor: NIH, Sponsor Award ID: U19HD077627
September 12, 2011 - July 31, 2017 - Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment , Principal Investigator . Sponsor: NIH, Sponsor Award ID: R01CA154517
Education
University of Minnesota, Minneapolis, BS with distinction, 1974, Nursing
University of Minnesota, Minneapolis, BA magna cum laude, 1976, Asian History
University of California, San Francisco & Berkeley, Ph.D., 1988, Medical Anthropology