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 | 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.

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. Wolf SM, Amendola LM, Berg JS, Chung WK, Clayton EW, Green RC, Harris-Wai J, Henderson GE, Jarvik GP, Koenig BA, Lehmann LS, McGuire AL, O'Rourke P, Somkin C, Wilfond BS, Burke W. Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium. Genet Med. 2017 Aug 31.
    View on PubMed
  2. Gollust SE, Gray SW, Carere DA, Koenig BA, Lehmann LS, McGUIRE AL, Sharp RR, Spector-Bagdady K, Wang NA, Green RC, Roberts JS. Consumer Perspectives on Access to Direct-to-Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience. Milbank Q. 2017 Jun; 95(2):291-318.
    View on PubMed
  3. Petrillo LA, Dzeng E, Harrison KL, Forbes L, Scribner B, Koenig BA. How California Prepared for Implementation of Physician-Assisted Death: A Primer. Am J Public Health. 2017 Jun; 107(6):883-888.
    View on PubMed
  4. Zook M, Barocas S, Boyd D, Crawford K, Keller E, Gangadharan SP, Goodman A, Hollander R, Koenig BA, Metcalf J, Narayanan A, Nelson A, Pasquale F. Ten simple rules for responsible big data research. PLoS Comput Biol. 2017 Mar; 13(3):e1005399.
    View on PubMed
  5. Dry SM, Garrett SB, Koenig BA, Brown AF, Burgess MM, Hult JR, Longstaff H, Wilcox ES, Madrigal Contreras SK, Martinez A, Boyd EA, Dohan D. Community recommendations on biobank governance: Results from a deliberative community engagement in California. PLoS One. 2017; 12(2):e0172582.
    View on PubMed
  6. De Clercq E, Kaye J, Wolf SM, Koenig BA, Elger BS. Returning Results in Biobank Research: Global Trends and Solutions. Genet Test Mol Biomarkers. 2017 Mar; 21(3):128-131.
    View on PubMed
  7. Han PKJ, Umstead KL, Bernhardt BA, Green RC, Joffe S, Koenig B, Krantz I, Waterston LB, Biesecker LG, Biesecker BB. A taxonomy of medical uncertainties in clinical genome sequencing. Genet Med. 2017 Aug; 19(8):918-925.
    View on PubMed
  8. Berg JS, Agrawal PB, Bailey DB, Beggs AH, Brenner SE, Brower AM, Cakici JA, Ceyhan-Birsoy O, Chan K, Chen F, Currier RJ, Dukhovny D, Green RC, Harris-Wai J, Holm IA, Iglesias B, Joseph G, Kingsmore SF, Koenig BA, Kwok PY, Lantos J, Leeder SJ, Lewis MA, McGuire AL, Milko LV, Mooney SD, Parad RB, Pereira S, Petrikin J, Powell BC, Powell CM, Puck JM, Rehm HL, Risch N, Roche M, Shieh JT, Veeraraghavan N, Watson MS, Willig L, Yu TW, Urv T, Wise AL. Newborn Sequencing in Genomic Medicine and Public Health. Pediatrics. 2017 Feb; 139(2).
    View on PubMed
  9. Carey EC, Dose AM, Humeniuk KM, Kuan YC, Hicks AD, Ottenberg AL, Tilburt JC, Koenig B. The Experience of Hospital Death. Am J Hosp Palliat Care. 2017 Jan 01; 1049909116689547.
    View on PubMed
  10. 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 Sep 06; 17(1):54.
    View on PubMed
  11. 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 Jul 07; 99(1):246.
    View on PubMed
  12. Roter DL, Yost KJ, O'Byrne T, Branda M, Leppin A, Kimball B, Fernandez C, Jatoi A, Kumbamu A, Montori V, Koenig B, Geller G, Larson S, Tilburt J. Communication predictors and consequences of Complementary and Alternative Medicine (CAM) discussions in oncology visits. Patient Educ Couns. 2016 Sep; 99(9):1519-25.
    View on PubMed
  13. Green RC, Goddard KAB, 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 02; 98(6):1051-1066.
    View on PubMed
  14. 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
  15. 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
  16. 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
  17. Dingel MJ, Ostergren J, McCormick JB, Hammer R, Koenig BA. The media and behavioral genetics: Alternatives coexisting with addiction genetics. Sci Technol Human Values. 2015 Jul 01; 40(4):459-486.
    View on PubMed
  18. 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.
    View on PubMed
  19. 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
  20. 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

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