Latest revision: 6-15-17

Curriculum Vitae:

ERIC THOMAS JUENGST 1. CONTACT INFORMATION UNC Center for Bioethics Tel: 919-962-4340 333 McNider Hall Fax: 919-962-2154 333. S. Columbia Road Email: ejuengst@med.unc.edu University of North Carolina, Chapel Hill Web: http://bioethics.unc.edu Chapel Hill, NC 27599 2. EDUCATION 1985 Ph.D. (Philosophy of Medicine), Department of Philosophy, Georgetown

University Dissertation: "The Concept of Genetic Disease and Theories of Medical Progress."

Advisor: Tom L. Beauchamp, Ph.D. 1983 M.A. (Ethics), Department of Philosophy, Georgetown University, Washington,

DC 1982 Visiting Graduate Student (History and Philosophy of Science), Department of

Philosophy, The University of Maryland, College Park, MD 1978 B.S. (Biology) The University of the South, Sewanee, TN

3. PROFESSIONAL EXPERIENCE University of North Carolina, Chapel Hill 2010- Director, UNC Center for Bioethics 2010- Professor, Department of Social Medicine, School of Medicine 2010- Professor, Department of Genetics, School of Medicine 2011- Director, Clinical Research Ethics Core, NC Translational and Clinical Sciences Institute 2010-13 Faculty Associate, Carolina Center for Genome Sciences 2010- Faculty Associate, Center for Genetics and Society 2010- Faculty Associate, Center for AIDS Research 2010- Faculty Associate, NC Translational and Clinical Sciences Institute 2010- Resource Faculty, Department of Philosophy 2015- Faculty Associate, UNC Center for Health Equity Research

Case Western Reserve University

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2010- Adjunct Professor of Bioethics, Department of Bioethics, School of Medicine 2006-2010 Professor of Bioethics, Department of Bioethics, School of Medicine 2004-2010 Director, Center for Genetic Research Ethics and Law, Department of Bioethics 1994-2006 Associate Professor of Bioethics, Department of Bioethics, School of Medicine, Tenure awarded: 2002 1995-2010 Faculty Associate, Center for Human Genetics, School of Medicine 1995-2010 Faculty Associate, Ireland Cancer Center, School of Medicine 2006-2010 Faculty Associate, Center for Clinical Investigation, School of Medicine The National Institutes of Health

1993-94 Chief, Ethical, Legal and Social Implications (ELSI) Branch, The National Center for Human Genome Research (NCHGR)

1992-93 Acting Chief, ELSI Branch, NCHGR 1990-92 Program Director, Program on Ethical, Legal and Social Implications, Research

Grants Branch, NCHGR

The Pennsylvania State University 1988-90 Assistant Professor of Humanities (Philosophy), Department of Humanities,

College of Medicine 1989-90 Faculty, Science, Technology and Society Program, College of Engineering 1988-90 Associate Faculty, The Graduate School The University of California, San Francisco

1987 Acting Chief, Division of Medical Ethics, Department of Medicine, School of Medicine

1984-87 Adjunct Lecturer - Adjunct Assistant Professor, UCSF Division of Medical Ethics The National Endowment for the Humanities

1980-84 Program Specialist, Program on the Humanities, Science and Technology, Division of Research Programs

Georgetown University

1982-83 Lecturer, Department of Philosophy

4. HONORS

a. Honorary and Visiting Appointments: 2017 Visiting Professor, Department of Philosophy of Science, University of

Granada, Spain. 2013 Traub-Byfield Fellow, University of Illinois College of Medicine, Chicago,

IL.

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2012-2014 External Faculty, Center for Medical Law and Ethics, University of Stellenbosch, South Africa

2010 Faculty, The Brocher Summer School, Foundation Brocher, Switzerland 2008 Erasmus Mundus Scholar, Linkoping University, Linkoping, Sweden and the University of Utrecht, Utrecht, The Netherlands. 2007 HaSS Visiting Professor, Program on Ethics and the Life Sciences, University of Newcastle, Newcastle upon Tyne, England. 2007 Visiting Professor, Department of Philosophy, University of Salamanca, Spain

2006 Honorary Member, International Forum on Biophilosophy, Leuven, Belgium 2003 Distinquished Fellow, Center for Society, the Individual, and Genetics, University of California, Los Angeles

1997 Scholar -in-Residence, Center for the Study of Ethics, Utah Valley State College

1994 Visiting Lecturer, Centre for Health Policy and Ethics, University of Newcastle Faculty of Law, Newcastle, Australia

1988-94 Adjunct Professor, Science, Technology and Society Program, Pennsylvania State University

1992 Vira I. Heinz Visiting Professor, University of Pittsburgh, Pittsburgh, PA, 1991-94 Fellow, The Kennedy Institute of Ethics, Georgetown University,

Washington DC 1989-90 Commonwealth Speaker, Pennsylvania Humanities Council

1989 Fellow, National Endowment for the Humanities Summer Seminar in the Philosophy of Biology, Virginia Polytechnic Institute and State University, Blacksburg, VA

1986 Visiting Assistant Professor, The Medical Humanities Program, College of Medicine, The University of Florida

b. Honors and Awards: 2015 Dalinka-Penn Lecture, School of Medicine, University of Pennsylvania,

Philadephia, PA. 2013 Picard Lecture, Faculty of Law, University of Alberta, Edmonton, Canada

2009 Distinguished Bioethics Lecture, University of California-Davis School of Medicine, Sacremento, CA

2009 Weinberger-Vermut Lecture(s) on Genetics and Ethics, Cedars-Sinai Medical Center/UCLA School of Medicine, Los Angeles, CA 2006 Golden Eurydice Prize (for leadership in biophilosophy), International Forum on

Biophilosophy, Brussels, Belgium 2005 Jo-Ann Miller Memorial Lecture in Medical Ethics, Alfred University, Alfred, NY

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2000 Elected Fellow, The Hastings Center , Garrison, NY. Chair, Fellows Nominating Committee, 2004. 2001 The Brady Lecture, Dept. of Psychiatry, University of Colorado Health Science

Campus, Denver, CO. 2000 John Conley Lecture in Ethics, American Society of Head and Neck Surgery,

San Francisco, CA. 2000 Pettigrew Lecture in Faith and Society, Christian Theological Seminary,

Indianapolis, IN. 1999 Invited Participant, “Informatics meets Genomics: A Millenial Evening at the

White House,” Office of the President of the United States of America, Washington, DC.

1999 Charles Townsend Lecture in Medical Ethics, University of Texas Medical Branch, Galveston, TX.

1999 Reckling Lecture in Bioethics, University of Wyoming, Laramie, WY. 1998 Nancy K. Rhoden Lecture, Oberlin College, Oberlin, OH 1996 James A. Shannon Director’s Award, National Institutes of Health (Converted to RO1 Research Grant, Jan. 24 , 1997). 1996 Charles Bodemer Lecture, University of Washington, Seattle, WA 1992 National Institutes of Health Award of Merit 1991 National Center for Human Genome Research Director's Award 1990 Hart J. Stringfellow Jr. Lecture in Medical Ethics, The University of Florida,

Gainesville, FL 1988 Beth Anne Harnish Memorial Lecture, California State University, Fresno, CA 1987 GTE Lectureship on Science, Technology and Human Values, Tennessee

Technological University, Cookeville, TN 1983 National Endowment for the Humanities Special Acts and Services Award 1983 Thesis Research Award, Georgetown University 1982 NEH Sustained Superior Performance Award 1981 "Distinction" on Ph.D. Qualifying Exam in Ethics 1978-80 University Fellowship, Georgetown University 1978 Graduated Magna Cum Laude, with Departmental Honors in Biology 1978 Phi Beta Kappa, 1978. 5. BIBLIOGRAPHY

a. Refereed Articles

Eric Juengst, “Crowd-sourcing the moral limits of human gene editing,” Hastings Center Report 47; 3 (2017): 15-23.

Karen Meagher, Michelle McGown, Richard Settersten, Jennifer Fishman, Eric Juengst, “Precisely where are we going? Charting the new terrain of precision prevention.” Annual

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Review of Genomics and Human Genetics 18(2017): doi:10.1146/annurev-genom-091416-035222. [Epub ahead of print]

Michelle McGowan, Suparna Choudhury, Eric Juengst, Marcie Lambrix, Rick Settersten, Jennifer Fishman, “Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research.” Biosocieties 12 (2017): doi:10.1057/s41292-017-0043-6 Eric Juengst, Michelle McGowan, Jennifer Fishman, Richard Settersten, “From ‘personalized’ to ‘precision’ medicine: The ethical and social implications of rhetorical reform in genomic medicine,” The Hastings Center Report 46 (Sept/Oct, 2016): 21-33. Patrick Wooley, Michelle McGowan, Harriet Teare, Victoria Coathup, Jennifer Fishman, Richard Settersten, Sigrid Sterckx, Jane Kaye and Eric Juengst, “Citizen Science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.” BMC Medical Ethics, 17(2016): 33. Doi 10.1186/s12910-016-0117-1. Berg JS, Foreman AK, O'Daniel JM, Booker JK, Boshe L, Carey T, Crooks KR, Jensen BC, Juengst ET, Lee K, Nelson DK, Powell BC, Powell CM, Roche MI, Skrzynia C, Strande NT, Weck KE, Wilhelmsen KC, Evans JP, “A semiquantitative metric for evaluating clinical actionability of incidental or secondary findings from genome-scale sequencing,” Genetics in Medicine 2015 Aug 13. doi: 10.1038/gim.2015.104. [Epub ahead of print] PMID:26270767 Gabriel Lazaro-Munoz and Eric Juengst, “Challenges for implementing a PTSD preventive genomic sequencing program in the U.S. Military,” Case Western Reserve Journal of International Law, 47( 2015): 87-113. Gabriel Lázaro-Muñoz, John Conley, Arlene Davis, Marcia Van Riper, Rebecca Walker, Eric Juengst “Looking for trouble: Preventive genomic sequencing in the general population and the role of patient choice. American Journal of Bioethics 15;7 (2015): 3-14. Eric Juengst, Jennifer Fishman, Michelle McGowan, Richard Settersten, “Serving epigenetics before its time.” Trends in Genetics 30;10(October, 2014): 427-429 Michelle McGowan, Jennifer Fishman, Richard Settersten, Marcie Lambrix, Eric Juengst, “Gatekeepers or intermediaries? The role of clinicians in commercial genomic testing,“ PLOS ONE 9;9 (Sept. 2014): e108484. Doi:10.1371/journal.pone.0108484. Rebecca Walker, Eric Juengst, Warren Whipple, Arlene Davis, “Genomic research with the newly dead: a crossroads for ethics and policy,” Journal of Law, Medicine and Ethics 42;2 (2014): 220-231.

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Wylie Burke, Paul Applebaum, Lauren Dame, Patricia Marshall, Nancy Press, Reed Pyeritz, Richard Sharp and Eric Juengst, “The translational potential of research on the ethical, legal and social implications of genomics,” Genetics in Medicine, Advance on-line publication: 23 June 2014. Doi: 10.1038/gim.2014.74 Suparna Choudhury , Jennifer Fishman, Michelle McGowan, and Eric Juengst, “Big data, open science and the brain: lessons learned from genomics.” Frontiers in Human Neuroscience 8: (2014) 239. doi: 10.3389/fnhum.2014.00239

R. Jean Cadigan, Eric Juengst, Arlene Davis, Gail Henderson, “Underutilization of specimens in biobanks: an ethical as well as practical concern?” Genetics in Medicine, Advance on-line publication: 24 April 2014. doi:10.1038/gim.2014.38

Michelle McGowan, Richard Settersten, Eric Juengst, Jennifer Fishman, “Integrating genomics into clinical oncology: ethical and social challenges from proponents of personalized medicine,” Urologic Oncology 32(2014): 187-192.

Ingrid Holm, Sarah Savage, Robert Green, Eric Juengst, Amy McGuire, Susan Kornetsky, Stephanie Brewster, Steven Joffe, Patrick Taylor, “Guidelines for return of research results from pediatric genomic studies: Deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board” Genetics in Medicine, Advance on-line publication: 9 January 2014. doi:10.1038/gim.2013.190.

Gail Henderson, Eric Juengst, Nancy King, Kristine Kuczynski, Marsha Michie, “What research ethics should learn from genomics and society research: Lessons from the ELSI Congress of 2011,” Journal of Law, Medicine and Ethics 40;4(2012): 1008-1024.

Eric Juengst, Michael Flatt, Richard Settersten, “Personalized genomic medicine and the rhetoric of empowerment.” Hastings Center Report 42;5 (Sept-Oct, 2012): 34-40.

Eric Juengst, Richard Settersten, Jennifer Fishman, Michelle McGowan, “After the Revolution? Ethical and social challenges in ‘personalized genomic medicine’. Personalized Medicine 9(4)(June, 2012): 429-441.

Jane Kaye, Eric Meslin, Bartha Knoppers, Eric Juengst, Mylene Deschenes, Anne Cambon-Thomson, Donald Chalmers, Jantina DeVries, Kelly Edwards, Nils Hoppe, Alastair Kent, Clement Adebamowo, Patricia Marshall, “ELSI 2.0: A new international collaboratory for genomics and society research,” Science 336 (May 11, 2012): 673. Dressler, LG, Smolek, S, Ponsaran, R, et al (Includng Eric Juengst), “IRB perspectives on the return of results from genomic research” Genetics in Medicine 14(2012): 215-222.

Lemke, AA, Smith, ME, Wolf, WA, Trinidad, SB, and the GRRIP Consortium [including Eric Juengst], Broad data sharing in genetic rsearch: views of IRB professionals,” IRB: Ethics and Human Research 33;3(May-June, 2011) 1-6.

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Edwards, KI, Lemke, AA, Trinidad, SB, et. al., and the GRRIP Consortium [including Eric Juengst], “Attitudes towards genetic research review; results from a survey of human genetics researchers, Public Health Genetics April 11, 2011. Maxwell Mehlman, Jessica Berg, Eric Juengst, and Eric Kodish, “Ethical and legal issues in enhancement research on human subjects” Cambridge Quarterly of Healthcare Ethics 20;1 (2011): 30-46. Eric Juengst and John Huss, “From metagenomics to the metagenome: Conceptual change and the rhetoric of translational genomic research” Genomics, Society and Policy 5(2010): 1-19. Marilyn Coors, Jacqueline Glover, Eric Juengst and James Sikela, “The ethics of using transgenic nonhuman primates to study what makes us human” Nature Reviews Genetics 11(2010): 658-662. Lemke AA, Trinidad SB, Edwards KL, Starks H, Wiesner GL and the GRRIP Consortium (including Eric Juengst). Attitudes toward genetic research review: results from a national survey of professionals involved in human subjects protection. J Empir Res Hum Res Ethics. Mar 2010;5(1):83-92. Shawneequa Callier, John Huss and Eric Juengst, “GINA and preemployment criminal background checks.” The Hastings Center Report 40;1 (Jan-Feb, 2010): 15-19. Anders Nordgren and Eric Juengst,“Can genomics tell me who I am? Essentialistic rhetoric in direct-to-consumer DNA testing,” New Genetics and Society 28(2009): 157-172. Atwood Gaines and Eric Juengst, “Origin Myths in Bioethics: Constructing Sources, Motives and Reason in Bioethic(s).” Culture, Psychiatry and Medicine 32;3 (2008): 308-327.

Timothy Caulfield, Amy McQuire, Mildred Cho, Janet Buchanan, Michael Burgess, Ursula

Danilczyk, Christiana Diaz, Adam Felsenfeld, Kelly Fryer-Edwards, Shane Green, Marc Hodosh, Eric Juengst, Jane Kaye, Laurence Krebs, Barthat Knoppers, Trudo Lemmens, Eric Meslin, Juli Murphy, Robert Nussbaum, Margaret Otlowski, Daryl Pulman, Peter Ray, Jeremy Sugarman, Michael Timmons, “Research Ethics Recommendations for Whole Genome Research: Consensus Statement” PLoS Biology, 6(March, 2008): 430-435. Robert Binstock, Jennifer Fishman and Eric Juengst "Boundaries and Labels: Anti-Aging Medicine and Science" for the Journal of Rejuvenation Research, 9(2006): 433-435.. Peter Whitehouse and Eric Juengst, “Anti-aging medicine and Mild Cognitive Impairment: practice and policy issues for geriatrics,” Journal of the American Geriatrics Society 53(2005): 1417-1422. Eric Juengst, “FACE facts: Why genetics will continue to provoke bioethics,” Journal of Law, Medicine and Ethics 42(2004): 252-267.

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Eric Juengst and Roselle Ponsaran, “Normal aging, disease prevention and medical ethics,” Public Policy and Aging Report (2004): 14-18 Laura Beskow, Jeffrey Botkin, Mary Daly, Eric Juengst, Lisa Lehman, Jon Merz, Rebecca Pentz, Lainie Ross, Jeremy Sugarman, Lisa Susswein, Sharon Terry, Melissa Austin, Wylie Burke, “Ethical issues in identifying and recruiting participants for familial genetic research,” American Journal of Medical Genetics 130A(2004): 424-431. Max Mehlman, Robert Binstock, Eric Juengst, Roselle Ponsaran, Peter Whitehouse, “Antiaging medicine; can consumers be better protected?” The Gerontologist 44;3(2004): 304-310. Eric Juengst, Robert Binstock, Maxwell Mehlman, Stephen Post, Peter Whitehouse, “Biogerontology, ‘Anti-Aging Medicine,” and the challenges of human enhancement,” The Hastings Center Report 33 (July/August, 2003): 2-10. Robert Binstock, Eric Juengst, Maxwell Mehlman, Stephen Post, “Anti-aging medicine and science: An arena of conflict and profound social implications” Geriatrics and Aging 6(May 2003): 61-63.

Eric Juengst, Robert Binstock, Maxwell Mehlman, Stephen Post, “Anti-aging research and the need for public dialogue,” Science 299(Feb 28, 2003): 13-23

Beth Dugan, Georgia Weisner, Eric Juengst, Maryann O’Riordan, Anne Matthews, Nathanial Robin,”Duty to warn at-risk relatives for genetic disease: Genetic counselors’ clinical experience.” American Journal of Medical Genetics 119C(2003): 27-34. Eric Juengst, “Growing pains: Bioethical perspectives on growth hormone replacement research,” Journal of Anti-Aging Medicine 5;1(2002): 65-71.

Erik Parens and Eric Juengst, “Inadvertently crossing the germ line,” Science 292 (April 20, 2001): 397.

Eric Juengst and Michael Fossel , “The ethics of embryonic stem cells”, JAMA 284(2000): 3180-3184. *Eric Juengst “I-DNA-fication, personal privacy and social justice,” Chicago-Kent Law Review 74;4 (1999): 101-122 Eric Juengst, “Genetic testing and the moral dynamics of family life,” Public Understanding of Science 8(1999): 1-13 *Eric Juengst, “Group identity and human diversity: Keeping biology straight from culture,”

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American Journal of Human Genetics 63 (1998): 673-677.

Eric Juengst, “Caught in the middle again: Professional ethical considerations in genetic testing for health risks.” Genetic Testing 1;3(1998): 189-199 [Reprinted in: The Journal of the Association of Genetic Technologists 25; 5(1999): 171-183.]

Eric Juengst, “Groups as gate-keepers in genetic research: Conceptually confusing, morally hazardous and practically useless.” The Kennedy Institute of Ethics Journal ;2(June, 1998): 183-2000.

Peter Whitehouse, Eric Juengst, Max Mehlman, Tom Murray, “Enhancing cognition in the intellectually intact: Possibilities and pitfalls,” The Hastings Center Report , 27 (May-June, 1997): 14-22. [Reprinted in: Arthur Caplan, James McCartney, Dominic Sisti, Eds., Health, Disease and Illness: Concepts in Medicine (Washington DC: Georgetown University Press, 2004), pp. 263-268.

Eric Juengst, “Can enhancement be distinguished from prevention in genetic medicine?”

Journal of Medicine and Philosophy 22(1997): 125-142.

Stephen Post, Peter Whitehouse, Robert Binstock, Thomas Bird, Sharen Eckert, Lindsay Farer, Leonard Fleck, Atwood Gaines, Eric Juengst, Harry Karlinsky, Steven Miles, Thomas Murray, Kimberly Quaid, Norman Relkin, Allen Roses, P.H. St. George Hyslop, Greg Sachs, Bonnie Steinbock, Edward Truschke, Arthur Zinn, “The clinical introduction of genetic testing for Alzheimer Disease,” JAMA 277(1997): 832-840.

Eric Juengst, “Self -critical federal science? The ethics experiment within the U.S. Human

Genome Project,” Social Philosophy and Policy 13;2 (Summer, 1996): 63-96. [ Reprinted in: Ellen Frankel Paul, Fred Miller and Jeffrey Paul, Eds., Scientific Innovation,

Philosophy and Public Policy, NY: Cambridge University Press, 1996, pp. 63-96.] Eric Juengst, “Prevention and the goals of genetic medicine,” Human Gene Therapy 6;12(1995): 1595-1607. Eric Juengst, “The ethics of prediction: Genetic risk and the physician-patient relationship” Genome Science and Technology 1(1995): 21-36 [Reprinted in: “Genetic Diagnostics: Ethical and Social Policy Challenge,” In E. P. Fischer and S. Klose, Eds., The Diagnostic Challenge: The Human Genome Project (Munich: R. Piper, 1995), pp. 193-220.); and J.F. Monagle, D.C. Thomasma, Eds., Health Care Ethics: Critical Issues for the 21st Century (Frederick, MD: Apen Pub. Co., 1997), pp. 212-223; and B. Trolin, K. Fox, Eds., The Legislator’s Resource Guide to Genetic Technologies (Denver, CO: National Conference of State Legislatures, 1998).]

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Eric Juengst, "Human genome research and the public interest: Progress notes from an American science policy experiment," The American Journal of Human Genetics 54 (January, 1994): 121-128. Eric Juengst, "Developing and delivering new medical technologies: Issues beyond access," The Journal of Social Issues 49;2 (June, 1993): 201-210. Elinor Langfelder and Eric Juengst, "Social policy issues in genome research," Forum for Applied Research and Public Policy 8(Fall, 1993): 14-18. Frederick Li, Judy Garber, Stephen Friend, Louise Strong, Andrea Patenaude, Eric Juengst, Philip Reilly, Pelayo Correa, Joseph Fraumeni, "Recommendations on predictive testing for germ line p53 mutations among cancer prone individuals," Journal of the National Cancer Institute 84;15(August 5, 1992): 1156-1160. Eric Juengst and James D. Watson, "Human genome research and the responsible use of new genetic knowledge," International Journal of Bioethics 2(1991): 99-102. [Reprinted in: The Genetic Resource 6;2(1992): 41-43; and Health Care Ethics: Critical Issues, D. Thomasma, J. Monagle, Eds. (Gaithersburg, MD: Aspen Pub. Co., 1994), pp. 3-5.] Carl Frankel and Eric Juengst, "Cosmetic surgery for a fatally ill infant," Journal of Pediatric Opthalmology and Strabisimus 28(1991): 250-254. Eric Juengst, "The human genome project and bioethics," The Kennedy Institute of Ethics Journal 1;1(1990): 71-75. Eric Juengst, "The NIH 'Points to Consider' and the limits of human gene therapy," Human Gene Therapy 1;4 (Winter, 1990): 425-433. Eric Juengst, Issue Editor, "Human Germ-line Engineering," The Journal of Medicine and Philosophy 16;6 (Dec., 1991). Eric Juengst, Issue Editor, "Patterns of Reasoning in Medical Genetics," Theoretical Medicine 10;2 (June, 1989). Gregory Fowler, Eric Juengst and Burke Zimmerman, "Germ-line gene therapy and the clinical ethos of medical genetics," Theoretical Medicine 10;2 (June, 1989):151- 165. Eric Juengst, "Casuistry and the locus of certainty in ethics," (Review Essay) Medical Humanities Reviews 3;1 (1989): 19-27. Eric Juengst and Ronald Siegel, "Subtracting injury from insult: Ethical issues in the use of pharmaceutical implants," The Hastings Center Report 18;6 (Dec. 1988): 41-46.

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[Reprinted in T. Mappes and J. Zembaty (eds.) Biomedical Ethics 3rd Edition, NY: McGraw-Hill, 1990.] Eric Juengst, "Carving nature at its joints: critical realism and reductionism." Religion and Intellectual Life 5;3 (1988): 70-78. a. Books and Chapters:

Eric Juengst and Daniel Moseley, “Human Enhancement,” Stanford Encyclopedia of Philosophy (Stanford Metaphysics Research Lab, 2015): http:/plato.stanford.edu/archives/spr2015/entries/enhancement Eric Juengst, “Subhuman, Superhuman and Inhuman: Human Nature and the Enhanced Athlete,” In Tolleneer, Pieter Bonte & Sigrid Sterckx, Eds., Athletic Enhancement, Human Nature and Ethics: Threats and Opportunities of Doping Technologies (Springer-Verlag, 2012): 89-105. Eric Juengst, “Appeals to human nature in biomedical ethics: Managing our loyalties, legacies and love of champions” In N.King and M.Hyde, Eds., Bioethics, Public Moral Argument, and Social Responsibility (Routledge, 2011): 55-74.

Eric Juengst, “Metagenomic metaphors: New images of the human from ‘translational’ genomic research. In M. Drenthen, J. Keulartz, and J. Proctor, Eds., New Visions of Nature: Complexity and Authenticity (Springer, 2009): 128-153. [Adapted and translated as “We hebben weinig genen maar heel veel microben,” in Felix van de Laar and Peter Derkx, eds., Genen –Wat Willen We Ermee? (Garant, 2001), pp. 27-33.)

Eric Juengst, “Annotating the moral map of enhancement: gene doping, the limits of medicine and the spirit of sport,” in Tom Murray, Ed., Ethics, Genetics and the Future of Sport: Implications of Genetic Modification and Genetic Selection (Georgetown University Press, 2009), pp. 175-204. Eric Juengst and Aaron Goldenberg, “Genetic diagnostic, pedigree and screening research,” in Ezekiel Emanuel, Christine Grady, Reidar Lie, Franklin Miller and David Wendler, Eds., The Oxford Textbook on The Ethics of Clinical Research (Oxford University Press, 2008), 298-315. Eric Juengst and Hannah Grankvist, “Ethical issues in human gene transfer: a historical overview,” in Richard Ashcroft, Angus Dawson, Heather Draper and John McMillan, Eds, Principles of Health Care Ethics (John Wiley and Sons, 2007, 789-797). Eric Juengst, “Population genetic research and screening: conceptual and ethical issues.” In Bonnie Steinbock, Ed., The Oxford Handbook of Bioethics (Oxford, UK: Oxford U. Press, 2006): 471-490.

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Eric Juengst, “Alter-ing the human species? Misplaced essentialism in science policy,” In John Rasko, Gabrielle O’Sullivan and Rachel Ankeny, Eds., The Ethics of Inheritable Genetic Modification (Cambridge, UK: Cambridge U. Press, 2006): 149-159. [Expanded and reprinted as, “What’s Taxonomy Got to Do with It? “Species Integrity,” Human Rights, and Science Policy,’ In Julien Savalescu and Nicholas Bostrom, Eds., Human Enhancement, Oxford University Press, 2009,pp. .) Eric Juengst, “Genetics and Reproductive Technologies: Addendum,” In Donald Borchert, Ed., The Encyclopedia of Philosophy 2nd Edition (Farmington Hills, MI: Thompson Gale, Inc., 2006). Eric Juengst, “Anti-Aging Interventions: Ethical and Social Issues,” In Stephen Post, Ed., The Encyclopedia of Bioethics, 3rd Edition (NY: MacMillan Pub Co, 2004), pp. 112-115. [Translated into Japanese through the Japanese Committee of Translation and Publication for the Encyclopedia of Bioethics, in cooperation with the Seimei Rinri Gakkai (Japanese Association for Bioethics), Maruzen Publishing, 2007.] Eric Juengst, “DNA Identification,” In Stephen Post, Ed., The Encyclopedia of Bioethics, 3rd Edition (NY: MacMillan Pub Co, 2004), 677-683. [Translated into Japanese through the Japanese Committee of Translation and Publication for the Encyclopedia of Bioethics, in cooperation with the Seimei Rinri Gakkai (Japanese Association for Bioethics), Maruzen Publishing, 2007.] Eric Juengst, “Enhancement Uses of Medical Technology,” In Stephen Post, Ed., The Encyclopedia of Bioethics, 3rd Edition (NY: MacMillan Pub Co, 2004), pp. 753-757. [Translated into Japanese through the Japanese Committee of Translation and Publication for the Encyclopedia of Bioethics, in cooperation with the Seimei Rinri Gakkai (Japanese Association for Bioethics), Maruzen Publishing, 2007. Updated and expanded, in Bruce , Ed., The Encyclopedia of Bioethics 4th Edition (NY: MacMillan Pub Co, 2014), pp. ] Eric Juengst, “Genetic Testing and Screening: Populaton screening” In Stephen Post, Ed., The Encyclopedia of Bioethics, 3rd Edition (NY: MacMillan Pub Co, 2004), pp. 1007-1015. [Translated into Japanese through the Japanese Committee of Translation and Publication for the Encyclopedia of Bioethics, in cooperation with the Seimei Rinri Gakkai (Japanese Association for Bioethics), Maruzen Publishing, 2007.] Eric Juengst, “Can aging be interpreted as a healthy, positive process?” In May Wykle, Peter Whitehouse, Diana Morris, Eds., Successful Aging Through the Life Span: Intergenerational Issues in Health (NY: Springer Pub. Co; 2004): 5-18.

Eric Juengst, “Anti-aging research and the limits of medicine,” In Stephen Post, Robert Binstock, Eds, The Fountain of Youth: Scientific, Social and Ethical Perspectives on a Biomedical Goal (NY: Oxford University Press, 2004), 321-340.

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Eric Juengst, “Community engagement in genetic research: The “slow code” of research ethics? In Bartha Knoppers, Ed., Populations and Genetics: Legal and Socio-ethical perspectives (Boston: Martinus Nijhoff Publishers, 2003), pp. 181-199. Eric Juengst and Erik Parens, “Germ-line dancing: Definitional considerations for policy-makers. In Audrey Chapman and Mark Frankel, Eds. Designing Our Descendants: The Promises and Perils of Genetic Modifications (Baltimore: Johns Hopkins University Press, 2003), pp. 20-39. Eric Juengst, “The Ethics of Enhancement.” In Thomas Murray and Maxwell Mehlman, Eds., The Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, (NY: John Wiley & Sons, 2000):503-508

Eric Juengst, “Genetic Information, Ethics, Family Issues.” In Thomas Murray and Maxwell Mehlman, Eds., The Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, (NY: John Wiley Sons, 2000) : 390- 396. Eric Juengst, “Concepts of Disease After the Human Genome Project,” in Stephen Wear, and James Bono, Eds., Ethics and Values in Health Care on the Frontiers of the Twenty First Century Philosophy and Medicine Book Series, Volume 62 ) (Kluwer Publishers, Dordrecht, 1999): 125-150. [Reprinted in: Arthur Caplan, James McCartney, Dominic Sisti, Eds., Health, Disease and Illness: Concepts in Medicine (Washington DC: Georgetown University Press, 2004): 243-263.]

Eric Juengst, “Anticipating Enhancement: A conceptual and ethical challenge for gene therapy regulation,” In Nordgren, Anders (ed.), 1999. Gene Therapy and Ethics. Acta Universitatis Upsaliensis ( Studies in Bioethics and Research Ethics 4) ( Uppsala University Library: Uppsala, 1999): 97-109. [Excerpted and reprinted as: “Genetic enhancement: a conceptual and ethical challenge for gene therapy regulation,” in David Steinberg, Ed. Biomedical Ethics: A Multidisciplinary Approach to Moral Issues in Medicine and Biology (Hanover, NH: University Press of New England): pp144-147. Eric Juengst and LeRoy Walters, “Ethical issues in human gene transfer research,” With LeRoy Walters, in T. Friedmann, Ed., The Development of Human Gene Therapy (Cold Spring Harbor Press, 1999): pp. 691-713. Eric Juengst, “Should we treat the human germ-line as a global human resource?” In E. Aguis, S. Busuttil, Eds., Germ-Line Intervention and Our Responsibilities to Future Generations (Dordrecht, Kluwer Academic Publishers, 1998): 85-102. [Adapted and Reprinted as, “Democratic rhetoric and genetic engineering: Who owns the human gene pool?” In Milton Carrow, Ed., Democracy, Social Values and Public Policy (NY: Greenwood Press, 1998), pp. 163-178.] Eric Juengst “What does enhancement mean?” In E. Parens, Ed., Enhancing Human Traits: Ethical and Social Implications (Georgetown University Press, 1998): pp. 29-47.

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Eric Juengst, “The ethical implications of Alzheimer disease risk testing for other clinical uses o APOE genotyping.” In Stephen Post, Ed., Ethics, Genetics and Alzheimer Disease (Baltimore, MD: Johns Hopkins University Press, 1997): 177-190. Eric Juengst, “ Respecting human subjects in genome research: A preliminary policy agenda,” In Harold Vanderpool, Ed., The Ethics of Research with Human Subjects: Facing the 21st Century Frederick, MD: Univ. Pub. Group, 1996, pp. 401-429. Eric Juengst and LeRoy Walters, "Human gene therapy: Ethical issues," In W. Reich, Ed., The Encyclopedia of Bioethics, 2d Edition, (NY: MacMillan Pub. Co., 1995) , pp. 914-922. Eric Juengst, "Causation and the conceptual scheme of medical knowledge." In C. Delkeskamp and M. Gardell, Eds., Science, Technology and the Art of Medicine (Philosophy and Medicine Book Series, Vol. 44). Dordrecht, Holland: D. Reidel Pub. Co., 1993, pp. 127-151. James Watson and Eric Juengst, "Doing science in the real world: The role of ethics, law and the social sciences in the human genome project," in George Annas and Sherman Elias, Eds., Gene Mapping: Using Law and Ethics as Guides. NY: Oxford University Press, 1992, pp. xv-xix. Eric Juengst and Barbara Koenig, Editors., The Meaning of AIDS: Implications for Medical Science, Clinical Practice and Public Health Policy. New York: Praeger Press, 1989. Eric Juengst and Carol Weil, "Interpreting proxy directives: clinical decision- making and the durable power of attorney for health care." In C. Haeckler, R. Moseley, and D. Vawter, Eds., Advanced Directives in Medicine: Legal, Ethical and Medical Considerations. New York: Praeger Press, 1989, pp. 21-37. Eric Juengst, "Prenatal diagnosis and the ethics of uncertainty.” In D. Thomasma and J. Monagle, Eds., Medical Ethics: A Guide for Health Care Professionals. Rockville, Maryland: Aspen Publishers, Inc., 1988, pp. 12-28. [Reprinted in : T. Mappes and J. Zembaty , Eds., Biomedical Ethics 3rd Edition, NY: McGraw-Hill, 1990, and J. Monagle and D. Thomasma, Eds., Health Care Ethics: Critical Issues for the 21st Century (Rockville, MD: Aspen Pub., Inc. 1997), pp. 15-29] Eric Juengst, "Controversies in the treatment of short stature: Comments." In B. Sherman, Ed., Perspectives in Growth Hormone Research. New York: Marcel Dekker, Inc., 1988, pp. 188-191. C. Invited Editorials and Commentaries Eric Juengst, “Post-Apocalyptic Tris.” In L. M. Rasmussen, A.S.Iltis and M. Cherry, Eds., At the Foundations of Bioethics and Biopolitics: Critical Essays on the Thought of H. Tristram Engelhardt, Jr. . NY: Springer, 2015, pp. 247-251.

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Eric Juengst, “Promises and Perils of Genetic Testing.” DeVos Medical Ethics Colloquy 19 (March, 2014): 17-30. Eric Juengst, “TMI! Ethical challenges in managing and using large patient data-sets” North Carolina Medical Journal 75;3 (2014): 214-7.

Lynn Dressler and Eric Juengst, “Thresholds and boundaries in the disclosure of individual genetic research results,” American Journal of Bioethics, 6;6(Nov/Dec, 2006): 18-20.. Eric Juengst, “What next for human gene therapy?” British Medical Journal 326(June 28, 2003): 1410. Eric Juengst, “What community review can and cannot do,” Journal of Law, Medicine and Ethics 28(2000): 52-54. Eric Juengst, “Assessing the social impact of human genome research,” Kansas Medicine 96(Summer, 1995): 50-52. Elinor Langfelder and Eric Juengst, "Profile of Ethical, Legal and Social Implications (ELSI) Program, National Center for Human Genome Research," Politics and the Life Sciences 12(August, 1993): 273-277. Eric Juengst, "Priorities in professional ethics and social policy for human genetics," JAMA 266(October 2, 1991): 1835-1836. Eric Juengst, "Germ-line gene therapy: back to basics," The Journal of Medicine and Philosophy 16(1991):587-593. [Reprinted in Human Gene Therapy 3(1992): 45-47.] Eric Juengst, "Patterns of reasoning in medical genetics: An introduction," Theoretical Medicine 10;2 (1989): 101-105. 6. TEACHING ACTIVITIES

UNC-Chapel Hill Courses Course Director: 2016 “Anticipating Personalized Genomic Medicine: Ethical and Clinical Implications(MED 231.001) Fall, 2016. 2014 “Concepts of Health and Disease: Historical and Philosophical Perspectives” (MED 213.001, Spring, 2014)

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2012-14 “Anticipating Personalized Genomic Medicine: Ethical and Clinical Implications” (MED 231.001, Spring, 2012; Fall, 2012; Fall 2013) Faculty:

2010- 2011 “Medicine and Society” (MED 127, Fall, 2010; Spring, 2011) 2011-2014 “Science of Medicine Seminars” (MED 400, Spring, 2012, 2013) 2011- “Experimental Approaches to Human Disease” (PHYI 703, Spring, 2011, ‘12, ’13, ’14,’15,’16)

Graduate Thesis Supervision: 2008 “Opponent,” Ph.D. Dissertation, Department of Science and Society, University of Linkoping, Linkoping, Sweden (Eric Malmqvist). 2006-2008 Reader, Ph.D. Dissertation, Department of Science and Society, University of Linkoping, Linkoping, Sweden (Hannah Grankvist). 2004-2010 Advisor, Ph.D. Dissertation, Department of Bioethics, CWRU (Melissa Butson). 2004-08 Advisor, Ph.D. Dissertation, Department of Bioethics, CWRU (Aaron Goldenberg, MPH.) 2004-09 Advisor, Ph.D. Dissertation, Department of Bioethics, CWRU (Shlomit Zuckerman, JD). 1999-03 Reader, Ph.D. dissertation, Department of Anthropology, CWRU (Lydia

Lauritzen). 1998-02 Reader, Ph.D. dissertation, Department of Genetics, CWRU (Debra Mathews, currently at the Berman Bioethics Institute of Johns Hopkins University). 1997-99 Reader, Ph.D. dissertation, Institute for the Medical Humanities,

University of Texas Medical Branch (Faith Legay, currently at the AMA Ethics Resources Center).

1995-00 Reader, Ph.D. dissertation , Department of Philosophy, Georgetown University (Kevin Fitzgerald, SJ, M.D., currently at Georgetown Univ. School of Medicine).

Post-doctoral Mentoring and Advising: 2014- Mentor, Gabriel Lazaro, Ph.D., JD, P50 Center Postdoctoral Fellowship 2013-2015 Mentor, Daniel Moseley, Ph.D., T32 Postdoctoral Training Fellowship. 2008-2010 Mentor, Shawneequa Callier, JD, P50 Center Postdoctoral Fellowship. 2008-2010 Mentor, Ruth Farrell, MD, NIH K-12 Clinical Research Scholars Award. 2008-2009 Mentor, Michelle McGowan, Ph.D., P50 Center Postdoctoral Fellowship 2006-2007 Mentor, Lynn Dressler, Ph.D., NIH NRSA Postdoctoral Fellowship, 1F32-

HG004200

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2005-2007 Mentor, Patricia Powers, M.Div. P50 Center Postdoctoral Fellowship, 2004-07 Mentor, Christian Simon, Ph.D., NIH Mentored Scientist Development

Award, K07-CA 108457. 2001-03 Mentor: Marcia Van Riper, RN, Ph.D., NIH Mentored Scientist

Development Award, 1 KO1-NR00139. 2000-02 Mentor, James Sikela, Ph.D., NIH Senior Fellowship,

1 F33-HG00209-01. 1999-01 Mentor, Anita Weiss, M.D., NIH Mentored Scientist Development

Award, 1 K01-AI01616-0.1 7. GRANTS and RESEARCH ADMINISTRATION A. Active:

R01 HG-005277 Juengst, E., Fishman, J. Settersten, R. (PIs) 9/1/10-8/31/15 NIH, National Human Genome Research Institute Anticipating Personalized Genomic Medicine: Impact and Implications This project is the competitive renewal of: R01 AG/HG-1446, “Controlling Human Aging: Ethical and Policy Issues,” (listed under “ Completed Grants”) Role on Project: Principal Investigator,

UL1RR025747 Runge, M. (PI) 7/1/2008-6/31/2013 NIH UNC Clinical Translation Science Award This application provides 5 years of support for UNC-CH's CTSA award. The work proposed in this CTSA is designed to transform clinical and translational science at UNC and beyond. Role: Investigator

1P50 HG004488-01 Henderson, G. (PI) 9/2007-8/2012 NIH National Human Genome Research Institute Center for Genomics and Society The UNC-CH Center for Genomics and Society focuses on newly emerging ethical, legal and social implications (ELSI) of genomics research as the field shifts its focus from small efforts to those on a much larger scale, raising a wide range of ELSI issues not apparent in smaller-scale efforts. The Center will conduct research projects on these ELSI issues; offer a research ethics consultation service for genomic researchers; facilitate policy initiatives informed by our research findings; and provide training, education, and community engagement particularly for underrepresented minorities to foster ELSI research on large-scale genomics. Role: Co-Investigator

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2R01 HG002207-08A1 Marshall, P (PI) 9/30/2010-9/29/2011 NIH National Human Genome Research Institute Colon Cancer and Cancer Genomics Research Dr. Juengst will lead the research team in its work on the ethical and normative analysis. This will be done concurrently with the empirical research by turning to existing ELSI literature and other empirical, philosophical, and policy-related publications addressing trust in medicine and research, social obligations regarding research participation, and attitudes toward genomics research. He will help the team to assess normative questions raised by what we learn about the sources and strength of patient attitudes, and to generate points to consider in recommendations for the design of cancer genomics research and recruitment strategies. Role Co-Investigator

B. Completed: P.I.: Eric Juengst, Ph.D. Sponsor: NIH, National Human Genome Research Institute Title: Center for Genetic Research Ethics and Law Grant #: P50-HG03390 Role on Project: Principal Investigator, 50% time and fringe benefits Dates: 7/01/04-6/30/10 Direct Costs: $4,156,723; IDC: $2,122,063 This grant supports one of four national “Centers of Excellence in Ethical, Legal, and

Social Implications Research” awarded by the National Human Genome Research Institute.

P.I. Eric Juengst, Ph.D. Co-Investigators: Maxwell Mehlman, J.D., Jennifer Fishman, Ph.D., Robert Binstock, Ph.D. Sponsor: NIH, National Institute on Aging Title: “Controlling Human Aging: Ethical and Policy Issues.” Grant #: R01-AG01446 Role on Project: P.I.: 20% of time and fringe benefits Dates: 10/01/05 –8/31/10 Direct Costs: $862,303; IDC: $457,020 This project is the competitive renewal of: R01 AG/HG-1446, “Enhancement Ethics and

the Molecular Genetics of Aging,” P.I. Maxwell Melman, JD Sponsor: NIH, National Human Genome Research Institute Co-investigators: Eric Juengst, Jennifer Fishman, Jessica Berg, Rick Kodish, Mary Griffin Title: Protecting Human Subjects in Genetic Enhancement Research Application #: R01 HG003879 Role on Project: Co-investigator: 20 % time and fringe benefits Dates: 10-1-05 thru 9-30-07

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Direct costs: 500,000 total IDC: 265,000 P.I.: Georgia Wiesner, M.D. Co-Investigators: Eric Juengst, Anne Mathews, Nancy , Thomas Nozick Sponsor: NIH, National Cancer Institute Title: Essentials of Cancer Genetics On-line Curriculum Grant#: R25 CA092357 Role on Projects: Co-investigator: 5% of time and fringe benefits Dates: 12/01/02-11/30/07 Direct Costs:$1,438,053; IDC: $9,5044 P.I. Patricia Marshall, Ph.D. Sponsor: National Human Genome Research Institute Title: Consent in Genetic Research: An International Trial. Grant #: R01 HG002207-04 Role on Project: Co-investigator: 5% of time and fringe benefits,

Dates: 9/1/03-8/31/07 Direct Costs (year 1): $496,659 P.I.: Eric T. Juengst, Ph.D.

Co-Investigators: Maxwell Mehlman, J.D., Stephen Post, Ph.D, Robert Binstock, Ph.D. Sponsor: NIH, National Institute on Aging/National Human Genome Research Institute Title: “Enhancement Ethics and the Molecular Genetics Aging.” Grant #: R01-AG01446 Role on Project: P.I.: 40% of time and fringe benefits Dates: 10/01/01 –9/29/04 Direct Costs: $888,599; IDC: $470,957

This project was the competitive renewal of: R01 HG-1446-01, “Managing Enhancement: Professional Ethical and Public Policy Issues.”

P.I.: Eric T. Juengst, Ph.D. Sponsor: NIH, National Human Genome Research Institute Title: “Managing Enhancement: Professional Ethical and Public Policy Issues” Grant #: R01-HG01446-03 Role on Project: P.I.: 40% of time and fringe benefits. Dates: 3/1/99-2/29/01 Total Direct costs: $290, 878; IDC$154,165. This project was the competitive renewal of : R01 HG01446-01/2 “Anticipating

Enhancement: Ethical, Legal and Social Issues.” P.I. Eric Juengst Sponsor: NIH, National Human Genome Research Institute Title: “Anticipating Enhancement: Ethical, Legal and Social Issues.”

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Grant #R01 HG01446-01/02 Role on Project: P.I.: 40% effort Dates: 3/1/97-5/31/99 Total Direct costs: $216,224, P.I.: Laura Seminoff, Ph.D. Sponsor: NIH, National Human Genome Research Institute Title: “Therapeutic Research Consent: Empirical and Ethical Analysis Grant #: R01 CA 78212 Role on Project: Co-Investigator: 10% effort Dates: 10/01/97-09/30/00 P.I.: Caroline Whitbeck, Ph.D. Sponsor: NIH, National Institute for Allergies and Infectious Disease Title: “A Modular Short Course in Research Ethics” Grant # T-15 AI 07592 Role on Project: Co-Investigator: 8% effort. Dates: 6/1/99-6/31/2002 Funded Research Collaborations: completed

2005-2008 Consultant, “Ethical Dilemmas due to Prenatal and Genetic Diagnostics:

Interdisciplinary Assessment of Effects of Prenatal and Genetic Diagnostics on Women, their Partners, and on their Relationship in Different European Cultures,” Prof. Dr. phil. Marianne Leuzinger-Bohleber, Coordinator, E.C. SOCIETY-WP2004-2.1.2, University of Kassel, Kassel, Germany..

2004-08 Member, External Advisory Board, “Pharmacogenomics, Ethics and Public Policy,” Eric Meslin, P.I., NIGMS U-GM61373, Indiana University

2004-07 Member, Project Working Group, “Community Consultation for Genetic Research,” Pilar Ossario, P.I., NHGRI R01 HG003042, University of Wisconsin.

2003-06 Consultant, “"Risk Evaluation and Education for Alzheimer's Disease" Robert Green, P.I. NHGRI R01-HG02213 Boston University

2003-05 Consultant, “Academic Industry Relationships Among IRB Members,” Eric Campbell, P.I., NCI R01 grant, Massachusetts General Hospital Health Policy Institute

2002-05 Member, Advisory Board “Genetics of Nicotine Addiction: Examining Ethics and Policy” Barbara Koenig, P.I., NHGRI/NIDA R01 DA14577, Stanford University

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2001-03 Member, Research Group, “Performance Enhancement In Sport,” Tom Murray, P.I., U.S. Anti-Doping Agency Research Grant, The Hastings Center , Garrison, NY

1995-98 Member, Research Group, “Enhancing Human Traits: Ethical and Social Implications,” Erik Parens, P.I. National Endowment for the Humanities RH-21271-95, The Hastings Center, Garrison, NY

Pre-CWRU Grants: completed 1989 Project Director. Pennsylvania Humanities Council Research Conference

Grant ($11,200): "Discovery and Invention: The Dynamics of Scientific Change in Medicine."

1987 Project Director. California Council for the Humanities Research Conference Grant ($5,500): "Philosophical Problems in Medical Genetics."

1985-1980 Principal Investigator. National Science Foundation/National Institutes of Health Multi-disciplinary Research Award ($120,000): "Ethical Issues in Human Germ-line Interventions: Moral Choice Under Uncertainty."

1985 Co-Director (with Barbara Koenig and Albert R. Jonsen). California Council for the Humanities Research Conference Grant ($8,200): "Medical Ethics and AIDS: Perspectives from the Humanities."

8. PROFESSIONAL SERVICE a. Professional Society Memberships and Service: 2004- European Society for the Philosophy of Medicine 2001- American Society for Bioethics and Humanities (ELSI Affinity Group Co-Director, 2010- ) (Affinity Group Committee, 2002-2005) (Invited Plenary Speaker: “Beyond Therapy and the Bioethics of Enhancement”

6th Annual Meeting, Philadelphia, PA., Oct. 28, 2004.) 1985-01 Society for Health and Human Values (Co-Chair, Northeastern Region, 1989-1990) (Chair, Philosophy Curriculum Handbook Group, 1989-92) (Nominating Committee, 1989-90) 1985-01 Association for Faculty in the Medical Humanities (Executive Nominating Committee, 1989) (Chair, Philosophy Disciplinary Section, 1989)

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1980-1985 American Philosophical Association 1980-1985 Philosophy of Science Association b. NIH Study Section and Advisory Council Service: 2013, 2014 Member, NIAID Special Emphasis Panel, “Ethical Issues in Research on

HIV/AIDS and its Co-morbidities”(March 18, 2013; March 31, 2014). 2002-2005 Member, National Council for Human Genome Research, National Human Genome Research Institute. 2001-02 Member, Coriell Cell Repository Advisory Committee, National Institute

for General Medical Sciences 2000-04 Member, E.L.S.I. Research Advisors Committee, National Advisory

Council on Human Genome Research, National Human Genome Research Institute

1999 Member, National Human Genome Research Institute Special Emphasis Panel ZHG1-HGR-P(j2) (Reviewing applications to Program Announcement 96-042, “Ethical, Legal and Social Implications of Human Genome Research ) Bethesda, MD (Dec. 20)

1999 Member, National Human Genome Research Institute Special Emphasis Panel ZHG1 HGR-P (j4) (reviewing applications to Request For Applications HG-99-002, “Studies of the Ethical, Legal and Social Implications of Research into Human Genetic Variation” ) Bethesda, MD (Nov. 17-18)

1998-99 Ad hoc Member, Human Genome Initial Review Group GNOM-E (Reviewing applications to Program Announcement 96-042, “Ethical, Legal and Social Implications of Human Genome Research), Bethesda, MD (November 3, 1998, March 10, 1999, June 7, 1999)

1997-98 Member, NIH Center for Scientific Review Special Emphasis Panel ZRG GNM (1s), (Reviewing applications to Request for Applications OD -97- 001, “Informed Consent in Research Involving Human Participants” ), Bethesda, MD (July 30-Aug. 1, 1997 and Dec. 7-8, 1998)

c. Grant-making and Administration: 1990-1994 Program Officer, 65 NIH federal assistance (R01, R13, R25) grants 1993 Author, "Ethical, legal and social implications," National Center for

Human Genome Research 1991-1992 Progress Report. (NCHGR, April, 1993), pp. 37-49.

1992 Author, NIH Request for Applications #HG-91-01, "Studies of testing and counseling for cystic fibrosis mutations."

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1990-93 Project Officer, Federal contract #NO1-HG-0-0001 (National Academy of Sciences, "Assessing Genetic Risks")

1990 Basic R&D Project Officer Training 1980-84 Co-Chair (with Rachelle Hollander), NEH-NSF Ethics and Values in Science and Technology Proposal Review Panel 1980-82 Chair, NEH Interdivisional Policy Committee on Humanities Studies of

Science and Technology 1983 Co-Author (with David E. Wright), "Humanities, Science and

Technology: Guidelines and Application Forms," National Endowment for the Humanities.

d.. Service in Research Ethics: 2009-2012 Member, Informed Cohort Oversight Board, GenePartnership Program, Boston Children’s Hospital, 2008-12 Member, ELSI Working Group, EMERGE Consortium, NHGRI, NIH 2006-10 Member, Ethics Advisory Working Group, Genomic Medicine Program Advisory Committee, U.S. Department of Veterans Affairs.

2003-10 Member, Ethics Advisory Committee, National Aeronautical and Space Administration (NASA)

2001-02 Member, Observational Study Monitoring Board, Family Blood Pressure Program, National Heart, Lung and Blood Institute

2001-04 Member, Repository Oversight Committee, National Advisory Council on Aging, National Institute on Aging

2001-05 Member, Ethics Committee, American Society for Gene Therapy 2000-04 Member, Pharmacogenomics Working Group, Office of Bioethics, National

Institutes of Health 1997-01 Member, Recombinant DNA Advisory Board (RAC), National Institues of

Health 1995 Member, Rapid Action Task Force on Informed Consent to Genetic

Research, American Society of Human Genetics (Co-author, “ASHG Statement on consent for genetic research,” Am. J.

Human Genetics 59(1996): 471-474. 1994 External Member, Data Safety and Monitoring Board, University of Pittsburgh Gene Therapy Program 1993 Member, Internal Steering Committee, Panel on Human Embryo Research,

NIH 1993 Member, Intramural Working Group on Genetic Family Studies, NIH 1992-94 Member, NIH Special Review Committee (provided advice to the NIH

Deputy Director for Intramural Research about NIH protocols identified by the Institutes as potentially controversial).

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1991-93 Liaison Representative, Expert Panel on Genetic Strategies to Heart Lung and Blood Diseases, NHLBI

1991-92 Member, NIH Director's Clinical Research Advisory Committee (conducted systematic review of NIH human subjects review process)

1987 Consultant, AIDS Vaccine Project, Genentech, Inc. 1987 Member, Human Subjects Research Committee, Mt. Zion Medical Center,

San Francisco, CA 1980-84 Liaison Representative, Recombinant DNA Advisory Committee, National

Institutes of Health e. Service in Science Policy: 2003 Testimony to Secretary’s Advisory Commission on Genetics, Health and

Society, DHHS, Washington, DC (Inaugural meeting of SACGHS). (June 11)

1998-00 Member, AAAS Working Group on Germ-line Gene Therapy, American Association for the Advancement of Science

(Contributing author, M. Frankel and A. Chapman, Eds., Designing Our Descendents:Promises and Perils of Genetic Modification (Baltimore: Johns Hopkins Press, 2003).)

1997-01 Member, DNA Advisory Board, U.S. Federal Bureau of Investigation 1996-98 Member, Committee on Human Genome Diversity, Commission on Life

Sciences, National Research Council, National Academy of Sciences (co-author, Assessing Human Genetic Diversity, National Academy Press,

1998) 1993 Faculty, Dibner Institute-Marine Biological Laboratory Short Course, "The

Social History of Human Genetics," Woods Hole, MA 1993 Consultant, Canadian Genome Analysis and Technology Program 1991-93 Staff Coordinator, NIH-DOE Task Force on Genetic Information and

Insurance 1992 Invited reviewer, Office of Technology Assessment, U.S. Congress,

Report on population screening for cystic fibrosis mutations 1992 Participant, National DNA Identification (CODIS) Conference, Federal

Bureau of Investigation 1991-92 Member, Social Impact Subcommittee, Biotechnology Committee, Federal

Coordinating Committee on Science and Technology 1991-92 Member, Strategic Policy Panel on NIH Policies on Biomedical Research

Ethics in Society, NIH 1988-90 Member, Advisory Panel on Genetic Testing in the Workplace, Office of

Technology Assessment, U.S. Congress 1988 Invited Reviewer, Office of Technology Assessment, U.S. Congress,

Report on Mapping and Sequencing the Human Genome

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1987-88 Adviser, Committee on Mapping and Sequencing the Human Genome, National Academy of Sciences

(co-author, "Implications for Society," in Mapping and Sequencing the Human Genome, (National Academy Press, Washington DC, 1988), pp. 99-105.)

1986 Invited Reviewer, Office of Technology Assessment, U.S. Congress, Report on Ownership of Human Tissue and Cells

1986 Member, Advisory Panel on Molecular Biology and Genetic Engineering Staff Development, California State Department of Education

f. Service in Professional Ethics: 2002- Member, Ethical, Legal and Social Issues Working Group, Alpha-1 Foundation 1995-2006 Member, National Ethics Committee, The March of Dimes 1995-00 Member, Ethics Committee, Great Lakes Regional Genetics Network 1991-94 Liaison Member, Ethics Committee, Council of Regional Networks for

Genetic Services Ethics Committee 1991-94 Consultant, NIH Clinical Center Bioethics Office 1988-89 Faculty, The Intensive Bioethics Course, The Kennedy Institute of Ethics,

Georgetown University, Washington DC 1987 Faculty, The Western Coalition of Medical Humanities Centers Summer

Seminar on Medical Ethics, San Francisco, CA 1986-87 Member, Ethics Committee, On Lok Senior Health Care Services, San

Francisco, CA 1986-87 Member, Ethics Committee, San Francisco General Hospital 1984-87 Member, Ethics Consultation Service, UCSF Medical Center 1985-87 Coordinator, Ethics Grand Rounds, UCSF School of Medicine (monthly) 1984-87 Invited participant, regular case conference series for: Pediatric Bone

Marrow Transplant Program, Medical Genetics Group, Fetal Treatment Group, Intensive Care Nursery, Pediatric Intensive Care Unit, UCSF Medical Center

g. Service in Religion and Society: 2003 Consultant, “Ethical Issues in Human Genetic Enhancement,” National

Conference of Catholic Bishops, Washington DC (September 5-6) 1987-89 Member, Research Group on Genetics and Human Reproduction,

Catholic Health Association (co-author, Human Genetics: Ethical Issues in Genetic Testing,

Counseling and Therapy, (C.H.A, St. Louis, 1990)). 1985-90 Member, Board of Directors, Center for Theology and the Natural

Sciences, The Graduate Theological Union, Berkeley, CA

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1984-87 Member, Task Force on Theology and Cosmology, The Presbyterian Church in the USA

1986-87 Member, Board of Directors, The Landberg Center for Health and Ministry, UCSF

h. Service to the Scholarly Literature: 2008- Member, Editorial Board, Public Health Genomics 2007- Associate Editor for Ethics, Culture, Medicine and Psychiatry 2007- Member, Editorial Board, Theoretical Medicine and Bioethics 2002-2008 Associate Editor, Community Genetics 2002-04 Area Editor for Genetics, The Encyclopedia of Bioethics, 3rd Edition 2003- Member, Editorial Board, IRB: Journal of Human Subjects Research Ethics 1999- Member, Editorial Board, American Journal of Bioethics 1999- Member, Editorial Board, The Philosophy and Medicine Book Series, Kluwer

Press 1997- Member, Editorial Board, Medical Humanities Reviews 1994-99 Co-Editor, Ethics Section, American Journal of Medical Genetics 1991- Member, Editorial Board, Human Gene Therapy 1986- Member, Editorial Advisory Board, The Journal of Medicine and Philosophy i. National/International Conference Organization and Management

Planning Committee, “Expanding the ELSI Universe, 4th Int’l ELSI Research Community Congress, Farmington, CT, June 5-8, 2017. Organizing Committee, “Translational Research and Emerging Biomedical Technologies: Does the Distinction Between Clinical Care and Research Still Matter?” Oxford, UK, June 23-25, 2015. Organizer, “From Clinical to Community Sequencing: Emerging Ethical, Legal and Social Issues in Genomics.” American Society for Human Genetics/ American Society for Bioethics and Humanities Joint Satellite Symposium, San Diego, CA, October 18, 2014. Organizer, “ELSI 2.0: Planning a New International Collaboratory for Genomics and Society Research,” Rotterdam, NL, June 26, 2012. Organizing Committee, “Exploring the ELSI Universe, 3rd Intl’ ELSI Research Community Congress, Chapel Hill, NC, April 11-12, 2010. Organizer, “Translating ELSI: Global Perspectives in Research on the Ethical, Legal and Social Implications of Human Genome Research,” 2nd Intl’ ELSI Research Community Congress, Cleveland, OH, May 1-3, 2008.

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Co-Organizer (with Marilyn Coors and Mark Yarborough), “Engineering Immortality: The End of Death?” 11th Annual Genetics and Ethics in the 21st Century Conference, Aspen, Co., July 2006. Co-Organizer (with Susan Lederer), “Discovery and Invention: The Dynamics of Scientific Change in Medicine,” Society for Health and Human Values Spring National Meeting, Hershey, PA, April 19-21, 1990. Organizer, “Historical and Philosophical Problems in Medical Genetics,” 25th Transdisciplinary Symposium on Philosophy and Medicine, San Francisco, CA, Dec. 11-12, 1987. Co-Organizer (with Barbara Koenig), “AIDS and the Medical Humanities” Society for Health and Human Values Spring National Meeting, San Francisco, CA, April 10-11, 1986.

j. Institutional service UNC-Chapel Hill: University: 2013- Member, Steering Committee, Medicine, Culture and Literature MA Program, 2010- Member, Faculty Advisory Committee, Parr Center for Ethics, Dept. of Philosophy 2010-2014 Organizer, Bioethics @ UNC Faculty Interest Group 2012-14 Member, UNC Task Force on the Management of Genomic Data

(Report: Recommendations for the Stewardship of Genomic Data, April, 2014) School of Medicine: 2012-2015 Member, Conflict of Interest Committee 2011- Member, NC TraCS Steering Committee 2010- Chair, Merrimon Lecture Committee 2010- Chair, Health and Human Rights Lecture Committee UNC Health System 2012- Study Review Committee on Compensation for Research Injury 2010- Ex-Officio Member, UNC Hospital Ethics Committee Department of Social Medicine 2010- Member, Executive Committee

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