Barbara A. Koenig, PhD

Barbara A. Koenig, PhD

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

Phone: (415) 476-3786

UCSF Profiles

Cancer Center Membership

Program Member » Cancer Control» Cancer Genetics

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.


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. O'Doherty KC, Christofides E, Yen J, Bentzen HB, Burke W, Hallowell N, Koenig BA, Willison DJ. If you build it, they will come: unintended future uses of organised health data collections. BMC Med Ethics. 2016; 17(1):54.
    View on PubMed
  2. Green RC, Goddard KA, Jarvik GP, Amendola LM, Appelbaum PS, Berg JS, Bernhardt BA, Biesecker LG, Biswas S, Blout CL, Bowling KM, Brothers KB, Burke W, Caga-Anan CF, Chinnaiyan AM, Chung WK, Clayton EW, Cooper GM, East K, Evans JP, Fullerton SM, Garraway LA, Garrett JR, Gray SW, Henderson GE, Hindorff LA, Holm IA, Lewis MH, Hutter CM, Janne PA, Joffe S, Kaufman D, Knoppers BM, Koenig BA, Krantz ID, Manolio TA, McCullough L, McEwen J, McGuire A, Muzny D, Myers RM, Nickerson DA, Ou J, Parsons DW, Petersen GM, Plon SE, Rehm HL, Roberts JS, Robinson D, Salama JS, Scollon S, Sharp RR, Shirts B, Spinner NB, Tabor HK, Tarczy-Hornoch P, Veenstra DL, Wagle N, Weck K, Wilfond BS, Wilhelmsen K, Wolf SM, Wynn J, Yu JH. Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine. Am J Hum Genet. 2016 Jun 2; 98(6):1051-66.
    View on PubMed
  3. Joseph G, Chen F, Harris-Wai J, Puck JM, Young C, Koenig BA. Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing. Pediatrics. 2016 Jan; 137 Suppl 1:S36-46.
    View on PubMed
  4. McCullough LB, Brothers KB, Chung WK, Joffe S, Koenig BA, Wilfond B, Yu JH. Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice. Pediatrics. 2015 Oct; 136(4):e974-82.
    View on PubMed
  5. Wolf SM, Burke W, Koenig BA. Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide. J Law Med Ethics. 2015 Sep; 43(3):486-501.
    View on PubMed
  6. Wolf SM, Branum R, Koenig BA, Petersen GM, Berry SA, Beskow LM, Daly MB, Fernandez CV, Green RC, LeRoy BS, Lindor NM, O'Rourke PP, Breitkopf CR, Rothstein MA, Van Ness B, Wilfond BS. Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. J Law Med Ethics. 2015 Sep; 43(3):440-63.
    View on PubMed
  7. Breitkopf CR, Petersen GM, Wolf SM, Chaffee KG, Robinson ME, Gordon DR, Lindor NM, Koenig BA. Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank. J Law Med Ethics. 2015 Sep; 43(3):464-75.
    View on PubMed
  8. Frye MA, Doederlein A, Koenig B, McElroy SL, Nassan M, Seymour LR, Biernacka JM, Daniels AS. National Survey and Community Advisory Board Development for a Bipolar Disorder Biobank. Bipolar Disord. 2015 Sep; 17(6):598-605.
    View on PubMed
  9. Ostergren JE, Dingel MJ, McCormick JB, Koenig BA. Unwarranted optimism in media portrayals of genetic research on addiction overshadows critical ethical and social concerns. J Health Commun. 2015; 20(5):555-65.
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  10. Garrett SB, Koenig BA, Brown A, Hult JR, Boyd EA, Dry S, Dohan D. EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California. Clin Transl Sci. 2015 Aug; 8(4):362-6.
    View on PubMed
  11. Garrett SB, Dohan D, Koenig BA. Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California. Am J Bioeth. 2015; 15(9):56-7.
    View on PubMed
  12. Dose AM, Carey EC, Rhudy LM, Chiu Y, Frimannsdottir K, Ottenberg AL, Koenig BA. Dying in the Hospital: Perspectives of family members. J Palliat Care. 2015; 31(1):13-20.
    View on PubMed
  13. Koenig BA. Have we asked too much of consent? Hastings Cent Rep. 2014 Jul-Aug; 44(4):33-4.
    View on PubMed
  14. Ostergren JE, Hammer RR, Dingel MJ, Koenig BA, McCormick JB. Challenges in translational research: the views of addiction scientists. PLoS One. 2014; 9(4):e93482.
    View on PubMed
  15. Kimball BC, James KM, Yost KJ, Fernandez CA, Kumbamu A, Leppin AL, Robinson ME, Geller G, Roter DL, Larson SM, Lenz HJ, Garcia AA, Braddock CH, Jatoi A, de Nuncio ML, Montori VM, Koenig BA, Tilburt JC. Listening in on difficult conversations: an observational, multi-center investigation of real-time conversations in medical oncology. BMC Cancer. 2013; 13:455.
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  16. Hazin R, Brothers KB, Malin BA, Koenig BA, Sanderson SC, Rothstein MA, Williams MS, Clayton EW, Kullo IJ. Ethical, legal, and social implications of incorporating genomic information into electronic health records. Genet Med. 2013 Oct; 15(10):810-6.
    View on PubMed
  17. Hartzler A, McCarty CA, Rasmussen LV, Williams MS, Brilliant M, Bowton EA, Clayton EW, Faucett WA, Ferryman K, Field JR, Fullerton SM, Horowitz CR, Koenig BA, McCormick JB, Ralston JD, Sanderson SC, Smith ME, Trinidad SB. Stakeholder engagement: a key component of integrating genomic information into electronic health records. Genet Med. 2013 Oct; 15(10):792-801.
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  18. Olson JE, Ryu E, Johnson KJ, Koenig BA, Maschke KJ, Morrisette JA, Liebow M, Takahashi PY, Fredericksen ZS, Sharma RG, Anderson KS, Hathcock MA, Carnahan JA, Pathak J, Lindor NM, Beebe TJ, Thibodeau SN, Cerhan JR. The Mayo Clinic Biobank: a building block for individualized medicine. Mayo Clin Proc. 2013 Sep; 88(9):952-62.
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  19. McGuire AL, Joffe S, Koenig BA, Biesecker BB, McCullough LB, Blumenthal-Barby JS, Caulfield T, Terry SF, Green RC. Point-counterpoint. Ethics and genomic incidental findings. Science. 2013 May 31; 340(6136):1047-8.
    View on PubMed
  20. Koenig BA. Fixing research subjects protection in the United States: moving beyond consent. Mayo Clin Proc. 2013 May; 88(5):428-30.
    View on PubMed

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