University of California San Francisco
Helen Diller Family Comprehensive Cancer Center
Barbara A. Koenig, PhD

Barbara A. Koenig, PhD

Professor of Medical Anthropology & Bioethics Dept. of Social & Behavioral Sciences, Institute for Health & Aging, UCSF

Cancer Center Program Memberships

Cancer Control

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.

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
 


Professional Experience

  • 1986-88
    Adjunct Lecturer, Division of Medical Ethics, Dept of Medicine, Univ. of California, San Francisco.
  • 1988-93
    Assistant Adjunct Professor, Medical Anthropology Program/Division of Medical Anthropology, Department of Epidemiology and Biostatistics, University of California, San Francisco.
  • 1989-91
    Coordinator for Western Programs in Research and Education, The Hastings Center, Briarcliff Manor, NY.
  • 1993-99
    Senior Research Scholar, Center for Biomedical Ethics, Stanford University, Stanford, CA.
  • 1993-02
    Executive Director, Center for Biomedical Ethics, Stanford University, Stanford, CA.
  • 1999-03
    Associate Professor of Medicine, Stanford University, Stanford, CA (Acting 99-00).
  • 2003-05
    Associate Professor of Neurology & Neurological Sciences, Stanford University, Stanford, CA.
  • 2005-11
    Professor of Medicine, Mayo Clinic College of Medicine, Rochester, MN.
  • 2006-09
    Co-Director, Program in Professionalism and Bioethics, Mayo Clinic, Rochester, MN.
  • 2009-11
    Professor of Biomedical Ethics, Mayo Clinic College of Medicine, Rochester, MN.
  • 2011-present
    Professor of Medical Anthropology & Bioethics, Depts. of Social & Behavioral Sciences and Anthropology, History & Social Medicine, University of California, San Francisco, CA.

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. 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. Ethics Hum Res. 2019 Sep; 41(5):2-15.
    View on PubMed
  2. 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. Per Med. 2019 Jul; 16(4):325-333.
    View on PubMed
  3. 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. J Palliat Med. 2019 Jul 12.
    View on PubMed
  4. 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. JAMA Intern Med. 2019 Jul 01; 179(7):985-987.
    View on PubMed
  5. 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. Oncologist. 2019 May 17.
    View on PubMed
  6. 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. Am J Hum Genet. 2019 Jun 06; 104(6):1088-1096.
    View on PubMed
  7. 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. Science. 2019 05 03; 364(6439):445-446.
    View on PubMed
  8. 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. Genet Med. 2019 Oct; 21(10):2190-2198.
    View on PubMed
  9. Villanueva AG, Cook-Deegan R, Koenig BA, Deverka PA, Versalovic E, McGuire AL, Majumder MA. Characterizing the Biomedical Data-Sharing Landscape. J Law Med Ethics. 2019 Mar; 47(1):21-30.
    View on PubMed
  10. 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. J Law Med Ethics. 2019 Mar; 47(1):70-87.
    View on PubMed
  11. McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R. Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. J Law Med Ethics. 2019 Mar; 47(1):12-20.
    View on PubMed
  12. Majumder MA, Bollinger JM, Villanueva AG, Deverka PA, Koenig BA. The Role of Participants in a Medical Information Commons. J Law Med Ethics. 2019 Mar; 47(1):51-61.
    View on PubMed
  13. Bryant J, Markes A, Woolridge T, Cerruti D, Dzeng E, Koenig B, Diab M. Concurrent and Overlapping Surgery: Perspectives From Parents of Adolescents Undergoing Spinal Posterior Instrumented Fusion for Idiopathic Scoliosis. Spine (Phila Pa 1976). 2019 Jan 01; 44(1):53-59.
    View on PubMed
  14. Gordon DR, Radecki Breitkopf C, Robinson M, Petersen WO, Egginton JS, Chaffee KG, Petersen GM, Wolf SM, Koenig BA. Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences. AJOB Empir Bioeth. 2019 Jan-Mar; 10(1):1-22.
    View on PubMed
  15. Popejoy AB, Ritter DI, Crooks K, Currey E, Fullerton SM, Hindorff LA, Koenig B, Ramos EM, Sorokin EP, Wand H, Wright MW, Zou J, Gignoux CR, Bonham VL, Plon SE, Bustamante CD. The clinical imperative for inclusivity: Race, ethnicity, and ancestry (REA) in genomics. Hum Mutat. 2018 11; 39(11):1713-1720.
    View on PubMed
  16. Amendola LM, Berg JS, Horowitz CR, Angelo F, Bensen JT, Biesecker BB, Biesecker LG, Cooper GM, East K, Filipski K, Fullerton SM, Gelb BD, Goddard KAB, Hailu B, Hart R, Hassmiller-Lich K, Joseph G, Kenny EE, Koenig BA, Knight S, Kwok PY, Lewis KL, McGuire AL, Norton ME, Ou J, Parsons DW, Powell BC, Risch N, Robinson M, Rini C, Scollon S, Slavotinek AM, Veenstra DL, Wasserstein MP, Wilfond BS, Hindorff LA, Plon SE, Jarvik GP. The Clinical Sequencing Evidence-Generating Research Consortium: Integrating Genomic Sequencing in Diverse and Medically Underserved Populations. Am J Hum Genet. 2018 09 06; 103(3):319-327.
    View on PubMed
  17. Kumbamu A, Geller G, Leppin A, Fernandez C, Tilburt J, Koenig B. Contending Worldviews in the Clinical Encounter: An Empirical Study of Complementary and Alternative Medicine Deliberations in Contemporary Medical Oncology. J Altern Complement Med. 2018 Sep/Oct; 24(9-10):996-1002.
    View on PubMed
  18. Porter KM, Kauffman TL, Koenig BA, Lewis KL, Rehm HL, Richards CS, Strande NT, Tabor HK, Wolf SM, Yang Y, Amendola LM, Azzariti DR, Berg JS, Bergstrom K, Biesecker LG, Biswas S, Bowling KM, Chung WK, Clayton EW, Conlin LK, Cooper GM, Dulik MC, Garraway LA, Ghazani AA, Green RC, Hiatt SM, Jamal SM, Jarvik GP, Goddard KAB, Wilfond BS. Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience. Mol Genet Genomic Med. 2018 11; 6(6):898-909.
    View on PubMed
  19. Wehner MR, Dalma N, Landefeld C, Pare-Anastasiadou A, Koutelidas I, Chren MM, Aji N, Teng CE, Koenig BA, Tang J, Covinsky K, Linos E. Natural history of lesions suspicious for basal cell carcinoma in older adults in Ikaria, Greece. Br J Dermatol. 2018 09; 179(3):767-768.
    View on PubMed
  20. Johnston J, Lantos JD, Goldenberg A, Chen F, Parens E, Koenig BA. Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies. Hastings Cent Rep. 2018 Jul; 48 Suppl 2:S2-S6.
    View on PubMed

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