Barbara A. Koenig, PhD

Barbara Koenig, PhD
Director, UCSF Bioethics
Professor of Medical Anthropology and Bioethics, UCSF
Center for Transdisciplinary ELSI Research in Translational Genomics
Phone: (415) 476-3786
Fax: (415) 476-3915
Email: [email protected]

UCSF Profiles

Institute for Human Genetics

Research Interests:

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 “Center of Excellence” in ELSI (ethical, legal, and social implications) research that focuses on the translation of genomic technologies into clinical and public health practice. I was recently named Director of a new program: “UCSF Bioethics.”

I am the (joint) PI of the “parent” R01,” which is funded by NCI. That project examines the 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, published in October, 2015, that reports our policy recommendations. The final report integrates empirical bioethics work on research participant preferences with normative analysis. Using surveys and interviews we assessed stakeholder preferences; a national “Ethics & Policy Working Group” developed recommendations that were informed by our empirical work.

Several aspects of my work are directly relevant to our proposed administrative supplement request to expand our NCI-funded RO1 to a diverse population: genomic screening, including the use of next generation sequencing; community and stakeholder engagement; and consideration of race/ethnicity categories in research and clinical care. My work has been continuously funded by NIH since 1990. 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. And 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 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.

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 U.S. I co-chair the ELSI committee for the NHGRI “Clinical Sequencing Exploratory Research (CSER) consortium and previously served on the ELSI committee for the Electronic Medical Records and Genomics (eMERGE consortium). And in addition, a focus on the ethics of using racial categories in genomics research has informed all aspects of my research agenda. That is an overarching theme of the proposed research

Professional Honors and 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, UCSF
  • 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) 2016 “Saul O. Sidore Memorial Lectureship,” University of New Hampshire

Selected Publications:

  1. Koenig BA, Greely HT, McConnell LM, Silverberg HL, Raffin TA. Genetic testing for BRCA1 and BRCA2: recommendations of the Stanford Program in Genomics, Ethics, and Society. Breast Cancer Working Group. J Women’s Health. 1998 Jun; 7(5):531-45. PMID: 9650154
  2. McConnell LM, Koenig BA, Greely HT, Raffin TA. Genetic testing and Alzheimer disease: has the time come? Alzheimer Disease Working Group of the Stanford Program in Genomics, Ethics & Society. Nature Medicine. 1998 Jul; 4(7):757-9. PMID: 9662356
  3. Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton EW, Fletcher JG, Georgieff MK, Hammerschmidt D, Hudson K, Illes J, Kapur V, Keane MA, Koenig BA, Leroy BS, McFarland EG, Paradise J, Parker LS, Terry SF, Van Ness B, Wilfond BS. Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics. 2008; 36(2):219-48, 211. PMID: 18547191. PMCID: PMC2575242
  4. 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. PMID: 23686340. PMCID: PMC3772710
  5. Radecki-Breitkopf C, Petersen G, Wolf SM, Robinson M, Chaffee K, Lindor NM, Gordon D, Koenig BA “Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including After Participant Death: Empirical Results from a Cancer Biobank” Journal of Law, Medicine, and Ethics. 2015 Fall;43(3):464-75. PMCID: PMC4617194.
  6. Wolf SE, Branum R, Koenig BA, et al., “Returning a Research Participant’s Genomic Results to Relatives: Analysis and Recommendations,” Journal of Law, Medicine & Ethics. 2015 Fall; 43(3):440-63. PMCID: PMC4617203.
  7. Wolf SE, Burke W, Koenig BA. “Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide,” Journal of Law, Medicine & Ethics. 2015 Fall;43(3):486-501. PMCID: PMC4620583.
  8. McCullough L, Brothers L, Chung W, Joffe S, Koenig BA, Wilfond B, Yu J. Professionally Responsible Disclosure Of Genomic Sequencing Results In Pediatric Practice. Pediatrics, 2015 Oct;136(4):e974-82. PMCID: PMC4586726.
  9. Lee SSJ, Mountain J, Koenig BA. The Meanings of “Race” in the New Genomics: Implications for Health Disparities Research. Yale Journal of Health Policy, Law, and Ethics, 2001; 1(1): 33-75. PMID: 12669320
  10. Sankar P, Cho MK, Condit CM, Hunt LM, Koenig BA, Marshall P, Lee SSJ, Spicer P. Genetic Research and Health Disparities. JAMA, 2004; 291(24): 2985-2989. PMCID: PMC2271142.
  11. Lee J, Soo-Jin S, Mountain J, Koenig BA, et al. The Ethics of Characterizing Difference: Guiding Principles on Using Racial Categories in Human Genetics. Genome Biology, 2008 (9): 404. PMCID: PMC2530857.
  12. Koenig BA, Lee SSJ, Richardson S. (eds) Revisiting Race in a Genomic Age. Studies in Medical Anthropology, Edited by Alan Harwood, New Brunswick, NJ, Rutgers University Press 2008.
  13. Mueller PS, Montori VM, Bassler D, Koenig BA, Guyatt GH. Ethical issues in stopping randomized trials early because of apparent benefit. Annals of Internal Medicine, 2007; 146:878-881.
  14. 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. PMID: 24001487. PMCID: PMC4258707
  15. 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 Jan 10. PMCID: PMC4499012
  16. Koenig BA. Have we asked too much of consent? Hastings Center Reports. 2014 Jul‐Aug; 44(4):33‐4. PMID: 25043364. PMCID: PMC4249719
  17. James KM, Cowl CT, Tilburt JC, Sinicrope PS, Robinson ME, Frimannsdottir KR, Tiedje K, Koenig BA. “Impact of direct-to-consumer predictive genomic testing on risk perception and worry among patients receiving routine care in a preventive health clinic.” Mayo Clinic Proceedings, 2011; 86(10):933-40. PMCID: PMC3184022.
  18. Gundle KR, Dingel MJ, Koenig BA. 'To prove this is the industry's best hope': big tobacco's support of research on the genetics of nicotine addiction. Addiction. 2010 Jun; 105(6):974-83. PMID: 20659058. PMCID: PMC2911634
  19. Hammer RR, Dingel MJ, Ostergren JE, Nowakowski KE, Koenig BA. The experience of addiction as told by the addicted: incorporating biological understandings into self-story. Culture, Medicine, & Psychiatry. 2012 Dec; 36(4):712-34. PMID: 23081782. PMCID: PMC3500839
  20. 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. PMID: 24030437. PMCID: PMC3909653

For a complete list of published works (peer-reviewed, book chapters, books, abstracts), go to: