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

  • August 4, 2017 - May 31, 2022 - 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, Sponsor Award ID: U01HG009599
  • 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, Sponsor Award ID: R01CA211999
  • September 5, 2013 - August 31, 2019 - Sequencing of Newborn Blood Spot DNA to Improve and Expand Newborn Screening , Principal Investigator . Sponsor: NIH, Sponsor Award ID: U19HD077627
  • September 12, 2011 - July 31, 2017 - Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment , Principal Investigator . Sponsor: NIH, Sponsor Award ID: R01CA154517

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. Wang T, Antonacci-Fulton L, Howe K, Lawson HA, Lucas JK, Phillippy AM, Popejoy AB, Asri M, Carson C, Chaisson MJP, Chang X, Cook-Deegan R, Felsenfeld AL, Fulton RS, Garrison EP, Garrison NA, Graves-Lindsay TA, Ji H, Kenny EE, Koenig BA, Li D, Marschall T, McMichael JF, Novak AM, Purushotham D, Schneider VA, Schultz BI, Smith MW, Sofia HJ, Weissman T, Flicek P, Li H, Miga KH, Paten B, Jarvis ED, Hall IM, Eichler EE, Haussler D, Human Pangenome Reference Consortium. The Human Pangenome Project: a global resource to map genomic diversity. Nature. 2022 04; 604(7906):437-446.  View on PubMed
  2. Zuk P, Sanchez CE, Kostick-Quenet K, Muñoz KA, Kalwani L, Lavingia R, Torgerson L, Sierra-Mercado D, Robinson JO, Pereira S, Outram S, Koenig BA, McGuire AL, Lázaro-Muñoz G. Researcher Views on Changes in Personality, Mood, and Behavior in Next-Generation Deep Brain Stimulation. AJOB Neurosci. 2022 Apr 18; 1-13.  View on PubMed
  3. Kostick-Quenet K, Kalwani L, Koenig B, Torgerson L, Sanchez C, Munoz K, Hsu RL, Sierra-Mercado D, Robinson JO, Outram S, Pereira S, McGuire A, Zuk P, Lazaro-Munoz G. Researchers' Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement. Front Hum Neurosci. 2022; 16:813922.  View on PubMed
  4. Rego S, Hoban H, Outram S, Zamora AN, Chen F, Sahin-Hodoglugil N, Anguiano B, Norstad M, Yip T, Lianoglou B, Sparks TN, Norton ME, Koenig BA, Slavotinek AM, Ackerman SL. Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach. Genet Med. 2022 Apr 08.  View on PubMed
  5. Brown JEH, Koenig BA. How Ought Decisions That Weigh on Life and Death Be Justly Informed and Governed to Benefit More than the Privileged Few with Access to a Trusted Clinician? Am J Bioeth. 2022 02; 22(2):1-3.  View on PubMed
  6. MacKenzie TC, Amid A, Angastiniotis M, Butler C, Gilbert S, Gonzalez J, Keller RL, Kharbanda S, Kirby-Allen M, Koenig BA, Kyono W, Lal A, Lianoglou BR, Norton ME, Ogasawara KK, Panchalee T, Rosner M, Schwab M, Thompson A, Waye JS, Vichinsky E. Consensus statement for the perinatal management of patients with α thalassemia major. Blood Adv. 2021 12 28; 5(24):5636-5639.  View on PubMed
  7. Brown JEH, Koenig BA. Ethical, Legal, and Social Implications of Fetal Gene Therapy. Clin Obstet Gynecol. 2021 12 01; 64(4):933-940.  View on PubMed
  8. Norstad M, Outram S, Brown JEH, Zamora AN, Koenig BA, Risch N, Norton ME, Slavotinek A, Ackerman SL. The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research. Genet Med. 2022 02; 24(2):410-418.  View on PubMed
  9. James JE, Riddle L, Koenig BA, Joseph G. The limits of personalization in precision medicine: Polygenic risk scores and racial categorization in a precision breast cancer screening trial. PLoS One. 2021; 16(10):e0258571.  View on PubMed
  10. Smith HS, Morain SR, Robinson JO, Canfield I, Malek J, Rubanovich CK, Bloss CS, Ackerman SL, Biesecker B, Brothers KB, Goytia CN, Horowitz CR, Knight SJ, Koenig B, Kraft SA, Outram S, Rini C, Shipman KJ, Waltz M, Wilfond B, McGuire AL. Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development. Patient. 2021 Oct 18.  View on PubMed
  11. Outram S, Muñoz KA, Kostick-Quenet K, Sanchez CE, Kalwani L, Lavingia R, Torgerson L, Sierra-Mercado D, Robinson JO, Pereira S, Koenig BA, Starr PA, Gunduz A, Foote KD, Okun MS, Goodman WK, McGuire AL, Zuk P, Lázaro-Muñoz G. Patient, Caregiver, and Decliner Perspectives on Whether to Enroll in Adaptive Deep Brain Stimulation Research. Front Neurosci. 2021; 15:734182.  View on PubMed
  12. Gutierrez AM, Robinson JO, Outram SM, Smith HS, Kraft SA, Donohue KE, Biesecker BB, Brothers KB, Chen F, Hailu B, Hindorff LA, Hoban H, Hsu RL, Knight SJ, Koenig BA, Lewis KL, Lich KH, O'Daniel JM, Okuyama S, Tomlinson GE, Waltz M, Wilfond BS, Ackerman SL, Majumder MA. Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium. J Clin Transl Sci. 2021; 5(1):e193.  View on PubMed
  13. Swanson K, Sparks TN, Lianoglou BR, Chen F, Downum S, Patel S, Rego S, Yip T, Van Ziffle J, Koenig BA, Slavotinek AM, Norton ME. Preference for secondary findings in prenatal and pediatric exome sequencing. Prenat Diagn. 2022 May; 42(6):753-761.  View on PubMed
  14. McInnes G, Sharo AG, Koleske ML, Brown JEH, Norstad M, Adhikari AN, Wang S, Brenner SE, Halpern J, Koenig BA, Magnus DC, Gallagher RC, Giacomini KM, Altman RB. Opportunities and challenges for the computational interpretation of rare variation in clinically important genes. Am J Hum Genet. 2021 04 01; 108(4):535-548.  View on PubMed
  15. 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. American Journal of Obstetrics and Gynecology. 2021 Feb 1; 224(2):s635-s636.  View on PubMed
  16. 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. Nat Genet. 2021 01; 53(1):2-8.  View on PubMed
  17. 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. Front Hum Neurosci. 2020; 14:578687.  View on PubMed
  18. 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. Front Hum Neurosci. 2020; 14:578695.  View on PubMed
  19. 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. J Med Ethics. 2020 Oct 06.  View on PubMed
  20. 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. Nat Med. 2020 09; 26(9):1392-1397.  View on PubMed

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