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

  • 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/NCI, Sponsor Award ID: R01CA211999
  • August 4, 2017 - May 31, 2021 - 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/NHGRI, Sponsor Award ID: U01HG009599
  • September 1, 2018 - August 31, 2019 - Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn Screening, Principal Investigator. Sponsor: NIH/NICHD, Sponsor Award ID: U19HD077627
  • June 16, 2013 - May 31, 2017 - Center for Transdisciplinary ELSI Research in Translational Genomics, Principal Investigator. Sponsor: NIH/NHGRI, Sponsor Award ID: P20HG007243

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

Honors & Awards

  • 1995
    Elected Fellow, The Hastings Center
  • 1995
    Elected Fellow, The Society for Applied Anthropology
  • 1998
    Individual Residency, Rockefeller Foundation Bellagio Study Center
  • 2002-03
    Fellow, Stanford Humanities Center
  • 2008
    M. Margaret Clark Memorial Lectureship, University of California, San Francisco
  • 2009
    Named as one of the "top 100" graduates, University of Minnesota School of Nursing Centenary
  • 2009
    "Curtis R. Holzgang Visiting Scholar" Providence Center for Health Care Ethics with Providence Health & Services, Portland, OR.
  • 2011
    DeVos Medical Ethics Lectureship, Grand Rapids, MI
  • 2012
    Research Fellow, Brocher Foundation, Geneva, Switzerland (January to March)

Selected Publications

  1. Mary E. Norton, Billie R. Lianoglou, Jessica van Ziffle, Amanda Faubel, Sarah Downum, Anne M. Slavotinek, Pui-Yan Kwok, Barbara Koenig, Neil Risch, Patrick Devine, Teresa N. Sparks 1027 Diagnostic yield of exome sequencing in prenatal diagnosis.  View on PubMed
  2. O'Doherty KC, Shabani M, Dove ES, Bentzen HB, Borry P, Burgess MM, Chalmers D, De Vries J, Eckstein L, Fullerton SM, Juengst E, Kato K, Kaye J, Knoppers BM, Koenig BA, Manson SM, McGrail KM, McGuire AL, Meslin EM, Nicol D, Prainsack B, Terry SF, Thorogood A, Burke W Toward better governance of human genomic data.  View on PubMed
  3. Zuk P, Sanchez CE, Kostick K, Torgerson L, Muñoz KA, Hsu R, Kalwani L, Sierra-Mercado D, Robinson JO, Outram S, Koenig BA, Pereira S, McGuire AL, Lázaro-Muñoz G Researcher Perspectives on Data Sharing in Deep Brain Stimulation.  View on PubMed
  4. Muñoz KA, Kostick K, Sanchez C, Kalwani L, Torgerson L, Hsu R, Sierra-Mercado D, Robinson JO, Outram S, Koenig BA, Pereira S, McGuire A, Zuk P, Lázaro-Muñoz G Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials.  View on PubMed
  5. Erikainen S, Friesen P, Rand L, Jongsma K, Dunn M, Sorbie A, McCoy M, Bell J, Burgess M, Chen H, Chico V, Cunningham-Burley S, Darbyshire J, Dawson R, Evans A, Fahy N, Finlay T, Frith L, Goldenberg A, Hinton L, Hoppe N, Hughes N, Koenig B, Lignou S, McGowan M, Parker M, Prainsack B, Shabani M, Staunton C, Thompson R, Varnai K, Vayena E, Williams O, Williamson M, Chan S, Sheehan M Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.  View on PubMed
  6. Adhikari AN, Gallagher RC, Wang Y, Currier RJ, Amatuni G, Bassaganyas L, Chen F, Kundu K, Kvale M, Mooney SD, Nussbaum RL, Randi SS, Sanford J, Shieh JT, Srinivasan R, Sunderam U, Tang H, Vaka D, Zou Y, Koenig BA, Kwok PY, Risch N, Puck JM, Brenner SE The role of exome sequencing in newborn screening for inborn errors of metabolism.  View on PubMed
  7. Popejoy AB, Crooks KR, Fullerton SM, Hindorff LA, Hooker GW, Koenig BA, Pino N, Ramos EM, Ritter DI, Wand H, Wright MW, Yudell M, Zou JY, Plon SE, Bustamante CD, Ormond KE Clinical Genetics Lacks Standard Definitions and Protocols for the Collection and Use of Diversity Measures.  View on PubMed
  8. Stout J, Kumbamu A, Tilburt J, Fernandez C, Geller G, Koenig B, Lenz HJ, Jatoi A Conversations on Cancer Chemotherapy Cessation in Patients With Advanced Cancer: Qualitative Findings From a Multi-Institutional Study.  View on PubMed
  9. Teresa N. Sparks, Flavia Chen, Shannon Rego, Billie R. Lianoglou, Sachi Patel, Anne M. Slavotinek, Barbara Koenig, Mary E. Norton 904: Agreement to secondary findings with exome sequencing in pre- and postnatal settings.  View on PubMed
  10. Milko LV, Chen F, Chan K, Brower AM, Agrawal PB, Beggs AH, Berg JS, Brenner SE, Holm IA, Koenig BA, Parad RB, Powell CM, Kingsmore SF FDA oversight of NSIGHT genomic research: the need for an integrated systems approach to regulation.  View on PubMed
  11. Childerhose JE, Finnila CR, Yu JH, Koenig BA, McEwen J, Berg SL, Wilfond BS, Appelbaum PS, Brothers KB Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.  View on PubMed
  12. Yu JH, Appelbaum PS, Brothers KB, Joffe S, Kauffman TL, Koenig BA, Prince AE, Scollon S, Wolf SM, Bernhardt BA, Wilfond BS Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium.  View on PubMed
  13. Cain CL, Koenig BA, Starks H, Thomas J, Forbes L, McCleskey S, Wenger NS Hospital and Health System Policies Concerning the California End of Life Option Act.  View on PubMed
  14. Cain CL, Koenig BA, Starks H, Thomas J, Forbes L, McCleskey S, Wenger NS Hospital Responses to the End of Life Option Act: Implementation of Aid in Dying in California.  View on PubMed
  15. Tilburt J, Yost KJ, Lenz HJ, Zúñiga ML, O'Byrne T, Branda ME, Leppin AL, Kimball B, Fernandez C, Jatoi A, Barwise A, Kumbamu A, Montori V, Koenig BA, Geller G, Larson S, Roter DL A Multicenter Comparison of Complementary and Alternative Medicine (CAM) Discussions in Oncology Care: The Role of Time, Patient-Centeredness, and Practice Context.  View on PubMed
  16. Horowitz CR, Orlando LA, Slavotinek AM, Peterson J, Angelo F, Biesecker B, Bonham VL, Cameron LD, Fullerton SM, Gelb BD, Goddard KAB, Hailu B, Hart R, Hindorff LA, Jarvik GP, Kaufman D, Kenny EE, Knight SJ, Koenig BA, Korf BR, Madden E, McGuire AL, Ou J, Wasserstein MP, Robinson M, Leventhal H, Sanderson SC The Genomic Medicine Integrative Research Framework: A Conceptual Framework for Conducting Genomic Medicine Research.  View on PubMed
  17. Nicol D, Eckstein L, Bentzen HB, Borry P, Burgess M, Burke W, Chalmers D, Cho M, Dove E, Fullerton S, Ida R, Kato K, Kaye J, Koenig B, Manson S, McGrail K, Meslin E, O'Doherty K, Prainsack B, Shabani M, Tabor H, Thorogood A, de Vries J Consent insufficient for data release.  View on PubMed
  18. Garrett JR, Lantos JD, Biesecker LG, Childerhose JE, Chung WK, Holm IA, Koenig BA, McEwen JE, Wilfond BS, Brothers K Rethinking the "open future" argument against predictive genetic testing of children.  View on PubMed
  19. Villanueva AG, Cook-Deegan R, Koenig BA, Deverka PA, Versalovic E, McGuire AL, Majumder MA Characterizing the Biomedical Data-Sharing Landscape.  View on PubMed
  20. Deverka PA, Gilmore D, Richmond J, Smith Z, Mangrum R, Koenig BA, Cook-Deegan R, Villanueva AG, Majumder MA, McGuire AL Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.  View on PubMed

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