Susan M. Wolf

  • Regents Professor and McKnight Presidential Professor of Law, Medicine & Public Policy
  • Faegre Drinker Professor of Law
  • Professor of Medicine

Degrees

  • Princeton University, A.B.
  • Yale Law School, J.D.

Expertise

  • Bioethics
  • Disability
  • Health Law
  • Medicine & Law
  • Science & Law
  • Women's Legal Issues

Professor Susan M. Wolf is a Regents Professor; McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Drinker Professor of Law; and Professor of Medicine. She is Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences and Founding Director of the Joint Degree Program in Law, Science & Technology.

Professor Wolf is an elected member of the National Academy of Medicine (NAM), an elected fellow of the American Association for the Advancement of Science (AAAS), an elected member of the American Law Institute (ALI), and an elected fellow of The Hastings Center as well as a past-member of the Fellows' Council. She has received numerous grants to support her research, including from the National Institutes of Health (NIH), National Science Foundation (NSF), and The Greenwall Foundation. In 2007-2010, Wolf served as a member of the Law & Neuroscience Project funded by the MacArthur Foundation. She has recently served as a senior consultant to The Hastings Center on its project on guidelines for end-of-life care, funded by the Donaghue Foundation and Sussman Trust. In 2012, she received a Robert Wood Johnson Foundation (RWJF) Investigator Award in Health Policy Research to fund research in 2012-14.

Professor Wolf teaches in the areas of health law, law and science, and bioethics. She is the faculty chair of the Law School's Concentration in Health Law & Bioethics. Professor Wolf was co-holder of the 1999-2000 Julius E. Davis Chair in Law, a 1998-99 Opperman Research Scholar, a 1996 recipient of the John K. & Elsie Lampert Fesler Research Grant, and a 1996 recipient of a University of Minnesota Medical School Merit Award. She was appointed to the Faegre Drinker Professorship in Law in 2000 and the McKnight Presidential Professorship in Law, Medicine & Public Policy in 2006; and Regents Professorship in 2021.

Professor Wolf received an A.B. degree summa cum laude from Princeton University and a J.D. degree from Yale Law School, with graduate work at Harvard University. She clerked for Judge Leonard B. Sand of the U.S. District Court for the Southern District of New York and then practiced with the New York law firm of Paul, Weiss, Rifkind, Wharton & Garrison from 1981 to 1984. In 1984-85, Professor Wolf was a National Endowment for the Humanities (NEH) Fellow at The Hastings Center in New York, a senior bioethics research institute. She then became the Center's Associate for Law. She also taught law and medicine at New York University School of Law as an adjunct associate professor from 1987 to 1992. In 1992-93, she was a Fellow at Harvard University in the Program in Ethics and the Professions.

Professor Wolf has served on a variety of governmental and institutional panels, including for the National Academies, as well as the American Bar Association (ABA) Coordinating Group on Bioethics and the Law, American Society for Reproductive Medicine (ASRM) Ethics Committee, New York City AIDS Review Panel, and Memorial Sloan-Kettering Cancer Center Ethics Committee. In 2011, she was appointed by the Secretary of Health & Human Services to the National Science Advisory Board for Biosecurity (NSABB) and served through 2016. She currently sits on the National Academies' Strategic Council for Research Excellence, Integrity, and Trust and Committee on Science, Engineering, Medicine, and Public Policy (COSEMPUP). She is a past chair of the AALS Section on Law, Medicine and Health Care and a past board member (elected) of the American Society of Bioethics and Humanities (ASBH). Professor Wolf has served on the Editorial Board for the Journal of Law, Medicine & Ethics; American Journal of Bioethics (AJOB); Journal of Urban Health; and Journal of Women's Health and Law; and as Faculty Advisor to the Minnesota Journal of Law, Science & Technology. She has lectured widely, in the United States and abroad.

Many of Professor Wolf's publications may be found on her SSRN page.

Or visit the Consortium on Law and Values in Health, Environment & the Life Sciences.

You can also visit Professor Wolf’s webpage on the Department of Medicine website.

Law, Biomedicine and Bioethics


Books

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life (Oxford University Press, rev. and expanded 2d ed., 2013)
(with
Nancy Berlinger
and
Bruce Jennings
)
Feminism & Bioethics: Beyond Reproduction (Oxford University Press, 1996) (editor)
Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts, Guidelines for State Court Decision Making in Life-Sustaining Medical Treatment Cases (West Publishing, rev. 2d ed., 1993) (Council member)
Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts, Guidelines for State Court Decision Making in Authorizing or Withholding Life-Sustaining Medical Treatment (West Publishing, 1991) (Council member)
Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying: A Report of The Hastings Center (Indiana University Press & The Hastings Center, 1987) (project director)

Selected Research Grants

Grant from National Science Foundation (NSF) (#2220611) (2022-24), on NetEthics: Building Tools & Training to Advance Responsible Conduct in Complex Research Networks Pioneering Novel Technologies (Susan M. Wolf, Timothy Pruett, Gillian Roehrig, Keisha Varma, Korkut Uygun (Massachusetts General Hospital) (PIs))
Grant from National Science Foundation (NSF) (#1941543) (2020-25), on NSF Engineering Research Center for Advanced Technologies for the Preservation of Biological Systems (ATP-BioSM) (John Bischof, Mehmet Toner (Massachusetts General Hospital), Guillermo Aguilar (Texas A&M University), Kevin Healy (UC Berkeley) (PIs))
Grant from National Institutes of Mental Health (NIMH), National Institutes of Health (NIH) (#1-RF1-MH123698-01 ) (2020-24), on Highly Portable and Cloud-Enabled Neuroimaging Research: Confronting Ethics Challenges in Field Research with New Populations (Francis Shen, Susan M. Wolf, Frances Lawrenz (PIs))
Grant from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) & National Cancer Institute (NCI) (#1-R01-HG008605) (2016-19), on LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application (Susan M. Wolf, Ellen Wright Clayton (Vanderbilt Univ.), Frances Lawrenz (PIs))
Grant from MnDRIVE Transdisciplinary Research, University of Minnesota (2014-16) on DNA Nanotechnology: Developing and Analyzing a New Tool for Sensing and Targeting Disease (Efrosini Kokkoli, Karen Ashe, Scott McIvor & Susan M. Wolf (PIs))
Grant #1-R01-CA154517 from National Institutes of Health (NIH), National Cancer Institute (NCI), and National Human Genome Research Institute (NHGRI) (2011-16) on Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment (Profs. Barbara Koenig, UCSF (Co-PI), Gloria Petersen, Mayo Clinic (Co-PI), and Susan M. Wolf (Co-PI))
Grant from Robert Wood Johnson Foundation (RWJF) Investigator Award in Health Policy Research (2012-14) on Translating Research into Health Benefits: Returning Research Results & Incidental Findings (Prof. Susan M. Wolf (PI))
Grant #1-RC1-HG005338 from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) (2009-11) on Nanodiagnostics and Nanotherapeutics: Building Research Ethics and Oversight (Prof. Susan M. Wolf (PI) with Profs. Jeffrey McCullough, Jeffrey Kahn, and Ralph Hall (Co-Investigators))
Grant #2-R01-HG003178 from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) (2009-11) on Managing Incidental Findings and Research Results in Genomic Biobanks & Archives (Prof. Susan M. Wolf (PI) with Profs. Brian Van Ness, Jeffrey Kahn, and Frances Lawrenz (Co-Investigators))
Grant #SES-0608791 from National Science Foundation (NSF) (2006-10) on Evaluating Oversight Models for Active Nanostructures and Nanosystems: Learning From Past Technologies in a Societal Context (Prof. Susan M. Wolf (PI) with Profs. Efrosini Kokkoli, Jennifer Kuzma, and Gurumurthy Ramachandran, and Jordan Paradise (Co-Principal Investigators))
Grant from the MacArthur Foundation (2007-10) on Law & Neuroscience (Prof. Michael S. Gazzaniga (PI); Prof. Susan M. Wolf, Project Member)
Grant from the MacArthur Foundation (2008-09), subaward from University of California, Santa Barbara on How Should Neuroscience Change Law? Lessons from the Impact of Genetics and Emerging Convergence of Genomics and Neuroscience (Prof. Susan M. Wolf (PI))
Grant from the Greenwall Foundation (2007-08) on Emerging Problems in Neurogenomics: Ethical, Legal & Policy Issues at the Intersection of Genomics & Neuroscience (Prof. Susan M. Wolf (PI) with Prof. Harry Orr and Jordan Paradise (Co-Investigators))
Grant #1-R01-HG003178 from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) (2005-07), on Managing Incidental Findings in Human Subjects Research (Prof. Susan M. Wolf (PI) with Profs. Charles Nelson, Jeffrey Kahn, and Frances Lawrenz (Co-Investigators))
Grant #1-R01-HG002818 from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) (2003-04), on Colliding Categories: Haplotypes, Race & Ethnicity (Dr. Jon Kahn (PI), Prof. Jeffrey Kahn, and Prof. Susan M. Wolf (Co-Investigators))
Grant #1-R01-HG02089 from National Institutes of Health (NIH), National Human Genome Research Institute (NHGRI) (2000-04) on Genetics & Disability Insurance: Ethics, Law & Policy (Prof. Jeffrey Kahn (PI) and Prof. Susan M. Wolf (Co-Investigator))

Journal Articles

Ethical, Legal, and Policy Challenges in Field-Based Neuroimaging Research Using Emerging Portable MRI Technologies: Guidance for Investigators and for Oversight, 11:1 Journal of Law and the Biosciences (2024)
(with
Frances Lawrenz
,
Donnella S. Comeau
,
Kafui Dzirasa
,
Barbara J. Evans
,
Damien Fair
,
Martha J. Farah
,
S. Duke Han
,
Judy Illes
,
Jonathan D. Jackson
,
Eran Klein
,
Karen S. Rommelfanger
,
Matthew S. Rosen
,
Efraín Torres
,
Paul Tuite
,
J. Thomas Vaughan
and
Michael Garwood
)
Trends in US Public Confidence in Science and Opportunities for Progress, 121:11 PNAS: Proceedings of the National Academy of Sciences of the United States of America (published online Mar. 4, 2024)
(with
Arthur Lupia
,
David B. Allison
,
Kathleen Hall Jamieson
,
Jennifer Heimberg
and
Magdalena Skipper
)
Assessment of Stored Red Blood Cells Through Lab-on-a-Chip Technologies for Precision Transfusion Medicine, 120:32 PNAS: Proceedings of the National Academy of Sciences of the United States of America (published online July 26, 2023)
(with
Ziya Isiksacan
,
Angelo D’Alessandro
,
David H. McKenna
,
Shannon N. Tessier
,
Erdem Kucukal
,
A. Aslihan Gokaltun
,
Nishaka William
,
Rebecca D. Sandlin
,
John Bischof
,
Narla Mohandas
,
Michael P. Busch
,
Caglar Elbuken
,
Umut A. Gurkan
,
Mehmet Toner
,
Jason P. Acker
,
Martin L. Yarmush
and
O. Berk Usta
)
Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal, 24 Annual Review of Genomics and Human Genetics 393-414 (2023)
(with
Robert C. Green
)
Triage Procedures for Critical Care Resource Allocation During Scarcity, 6(8) JAMA Network Open e2329688 (2023)
(with
Jackson S. Ennis
,
Kirsten A. Riggan
,
Nicholas V. Nguyen
,
Daniel B. Kramer
,
Alexander K. Smith
,
Daniel P. Sulmasy
,
Jon C. Tilburt
and
Erin S. DeMartino
)
Vitrification and Nanowarming Enable Long-Term Organ Cryopreservation and Life-Sustaining Kidney Transplantation in a Rat Model, 14 Nature Communications 3407 (2023)
(with
Zonghu Han
,
Joseph Sushil Rao
,
Lakshya Gangwar
,
Bat-Erdene Namsrai
,
Jacqueline L. Pasek-Allen
,
Michael L. Etheridge
,
Timothy L. Pruett
,
John C. Bischof
and
Erik B. Finger
)
Designing COVID-19 Vaccine Mandates in Colleges and Universities: A Roadmap to the 10 Key Questions, 9 Journal of Law and the Biosciences 1 (2022)
(with
James G. Hodge, Jr.
)
Addressing a Missing Link in Emergency Preparedness: New Insights on the Ethics of Care in Contingency Conditions from the Minnesota COVID Ethics Collaborative, 21(8) The American Journal of Bioethics 17-19 (2021)
(with
Joel T. Wu
,
Debra A. DeBruin
,
Thomas Klemond
and
Erin S. DeMartino
)
Emerging Ethical Issues Raised by Highly Portable MRI Research in Remote and Resource-limited International Settings, 238 NeuroImage (2021)
(with
Supriya Bhavnani
,
Sean Deoni
,
Jed T. Elison
,
Damien Fair
,
Michael Garwood
,
Michael S. Gee
,
Sairam Geethanath
,
Kendrick Kay
,
Kevin O. Lim
,
Georgia Lockwood Estrin
,
Monica Luciana
,
David Peloquin
,
Karen Rommelfanger
,
Nicoline Schiess
,
Khan Siddiqui
,
Efraín Torres
and
J. Thomas Vaughan
)
Pharmacogenomics Education, Research and Clinical Implementation in the State of Minnesota, 22 Pharmacogenomics 681-691 (2021) (with others)
A Roadmap for Precision Medicine Research Recruitment: Empirical Assessment of the Public's Willingness to Participate, 17 Personalized Medicine 345-359 (2020)
(with
Kelsey Moriarty
,
Patricia M. Veach
,
Bonnie LeRoy
,
Ian M. MacFarlane
and
Heather A. Zierhut
)
Developing an Ethics Framework for Allocating Remdesivir in the COVID-19 Pandemic, 95 Mayo Clinic Proceedings 1946-1954 (2020) (with others)
Ethical Challenges Arising in the COVID-19 Pandemic: An Overview from the Association of Bioethics Program Directors (ABPD) Task Force, 20:7 The American Journal of Bioethics 15-27 (2020)
(with
Amy L. McGuire
,
Mark P. Aulisio
,
F. Daniel Davis
,
Cheryl Erwin
,
Thomas D. Harter
,
Reshma Jagsi
,
Robert Klitzman
,
Robert Macauley
,
Eric Racine
,
Matthew Wynia
,
Paul Root Wolpe
and
The COVID-19 Task Force of the Association of Bioethics Program Directors (ABPD)
)
Ethical Issues Posed by Field Research Using Highly Portable and Cloud-Enabled Neuroimaging, 105 Neuron 771-775 (2020)
(with
Ramon Gilberto Gonzalez
and
Michael Garwood
)
From Genetics to Genomics: Facing the Liability Implications in Clinical Care, 48 Journal of Law, Medicine & Ethics 11-43 (2020) (for the LawSeq Liability Task Force)
(with
Gary Marchant
,
Mark Barnes
,
James P. Evans
and
Bonnie LeRoy
)
How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?, 48 Journal of Law, Medicine & Ethics 44-68 (2020) (for the LawSeq Quality Task Force)
(with
Barbara J. Evans
,
Gail Javitt
,
Ralph Hall
,
Megan Robertson
,
Pilar Ossorio
,
Thomas Morgan
and
Ellen Wright Clayton
)
Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics, 48 Journal of Law, Medicine & Ethics 69-86 (2020) (for the LawSeq Framework Task Force)
(with
Pilar N. Ossorio
,
Susan A. Berry
,
Henry T. Greely
,
Amy L. McGuire
,
Michelle A. Penny
and
Sharon F. Terry
)
Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions, 48 Journal of Law, Medicine & Ethics 87–104 (2020)
(with
Fook Yee Cheung
,
Lauren Clatch
,
Ellen Wright Clayton
and
Frances Lawrenz
)
Return of Results in Participant-Driven Research: Learning from Transformative Research Models, 48: 1(Supp) Journal of Law, Medicine & Ethics 159-166 (2020)
A Faustian Bargain That Undermines Research Participants’ Privacy Rights and Return of Results, 71 Florida Law Review 1281-1345 (2019)
(with
Barbara J. Evans
)
Consent for Clinical Genome Sequencing: Considerations from the Clinical Sequencing Exploratory Research Consortium, 16 Personalized Medicine 325–333 (2019) (with others)
How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities?, 29(Suppl 3) Ethnicity & Disease 623-28 (2019)
(with
Vence L. Bonham
and
Marino A. Bruce
)
Improving Recommendations for Genomic Medicine: Building an Evolutionary Process from Clinical Practice Advisory Documents to Guidelines, 21 Genetics in Medicine 2431-2438 (2019)
(with
Wylie Burke
,
Ellen Wright Clayton
,
Susan A. Berry
,
Barbara J. Evans
,
James P Evans
,
Ralph Hall
,
Diane Korngiebel
,
Anne-Marie Laberge
,
Bonnie S. LeRoy
and
Amy L. McGuire
)
Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences, 10 AJOB Empirical Bioethics 1-22 (2019)
(with
Deborah R. Gordon
,
Carmen Radecki Breitkopf
,
Marguerite Robinson
,
Wesley O. Petersen
,
Jason S. Egginton
,
Kari G. Chaffee
,
Gloria M. Petersen
and
Barbara A. Koenig
)
Approaches to Carrier Testing and Results Disclosure in Translational Genomics Research: The Clinical Sequencing Exploratory Research Consortium Experience, 6 Molecular Genetics & Genomic Medicine 898-909 (2018)
(with
Kathryn M. Porter
and
et al.
)
Return of Results and Data to Study Participants, 362 Science 159-60 (Oct. 12, 2018)
(with
Barbara J. Evans
)
Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners, 13 Journal of Empirical Research on Human Research Ethics 295–304 (2018)
(with
Carmen Radecki Breitkopf
,
Kari G. Chaffee
,
Marguerite E. Robinson
,
Noralane M. Lindor
,
Deborah R. Gordon
,
Barbara A. Koenig
and
Gloria M. Petersen
)
Navigating the Research-Clinical Interface in Genomic Medicine: Analysis from the CSER Consortium, 20 Genetics in Medicine 545–53 (2018)
(with
et al.
)
Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants, 46 Journal of Law, Medicine & Ethics 87-109 (2018)
(with
et al.
)
The Continuing Evolution of Ethical Standards for Genomic Sequencing in Clinical Care: Restoring Patient Choice, 45 Journal of Law, Medicine & Ethics 333-340 (2017)
The Need to Develop a Patient-Centered Precision Medicine Model for Adults with Chronic Disability, 17 Expert Review of Molecular Diagnostics 415-18 (2017)
(with
Bharat Thyagarajan
and
Brent L. Fogel
)
A Survey of Current Practices for Genomic Sequencing Test Interpretation and Reporting Processes in US Laboratories, Genetics in Medicine (published online Nov. 3, 2016)
(with
et al.
)
Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine, 98 American Journal of Human Genetics 1051-66 (2016)
(with
et al.
)
When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority, 168 Journal of Pediatrics 226-31 (2016)
(with
et al.
)
40 Years of Work on End-of-Life Care: From Patients’ Rights to Systemic Reform, 372 New England Journal of Medicine 678-82 (2015)
(with
Nancy Berlinger
and
Bruce Jennings
)
International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access, 43 Journal of Law, Medicine & Ethics 576-93 (2015)
(with
Rebecca Branum
)
Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide, 43 Journal of Law, Medicine & Ethics 486-501 (2015)
(with
Wylie Burke
and
Barbara A. Koenig
)
Preferences Regarding Return of Genomic Results to Family Members of Research Participants, Including After Participant Death: Empirical Results from a Cancer Biobank, 43 Journal of Law, Medicine & Ethics 464-75 (2015)
(with
Carmen Radecki Breitkopf
,
Gloria M. Petersen
and
others
)
Returning a Research Participant’s Genomic Results to Relatives: Analysis & Recommendations, 43 Journal of Law, Medicine & Ethics 440-63 (2015)
(with
others
)
Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children: Recent Statements by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics, 14(3) AJOB: American Journal of Bioethics 3-9 (2014)
(with
Ellen Wright Clayton
and
others
)
The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations, 42 Journal of Law, Medicine & Ethics 344-355 (2014)
(with
Gail E. Henderson
,
Kristine J. Kuczynski
,
Steven Joffe
,
Richard R. Sharp
,
D. Williams Parsons
,
Bartha M. Knoppers
,
Joon-Ho Yu
and
Paul S. Appelbaum
)
Patient Autonomy and Incidental Findings in Clinical Genomics, 340 Science 1049-50 (2013)
(with
George J. Annas
and
Sherman Elias
)
Recommendations for Returning Genomic Incidental Findings? We Need to Talk!, 15 Genetics in Medicine 854-59 (2013)
(with
Wylie Burke
and
others
)
Return of Individual Research Results and Incidental Findings: Facing the Challenges of Translational Science, 14 Annual Review of Genomics and Human Genetics 557-77 (2013)
The Big Picture on Small Medicine: Analyzing the Landscape of Approved and Clinical Nanomedicine Products, 9(1) Nanomedicine: Nanotechnology, Biology and Medicine 1-14 (2013)
(with
Michael L. Etheridge
,
Stephen A. Campbell
,
Arthur G. Erdman
,
Christy Haynes
and
Jeffrey McCullough
)
Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, 14 Genetics in Medicine 361-84 (2012)
(with
and
et al.
)
The Past, Present, and Future of the Debate over Return of Research Results and Incidental Findings, 14 Genetics in Medicine 355-57 (2012)
Mapping the Inputs, Analyses, and Outputs of Biobank Research Systems to Identify Sources of Incidental Findings and Individual Research Results for Potential Return to Participants, 14 Genetics in Medicine 385-92 (2012)
(with
Heather R. Bemmels
and
Brian Van Ness
)
Recommendations for Nanomedicine Human Subjects Research Oversight: An Evolutionary Approach for an Emerging Field, 40 Journal of Law, Medicine and Ethics 716 (2012)
(with
Ralph Hall
and
others
)
The Role of Law in the Debate over Return of Research Results and Incidental Findings: The Challenge of Developing Law for Translational Science, 13 Minnesota Journal of Law, Science & Technology 435-48 (2012)
Designing Oversight for Nanomedicine Research in Human Subjects: Systemic Analysis of Exceptional Oversight for Emerging Technologies, 13 Journal of Nanoparticle Research 1449-1465 (2011)
(with
Cortney Jones
)
Recommendations for Oversight of Nanobiotechnology: Dynamic Oversight for Complex and Convergent Technology, 13 Journal of Nanoparticle Research 1345-1371 (2011)
(with
Gurumurthy Ramachandran
,
Jordan Paradise
,
Jennifer Kuzma
,
Ralph Hall
,
Efrosini Kokkoli
and
Leili Fatehi
)
Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines from an NHLBI Working Group, 3 Circulation: Cardiovascular Genetics 574-80 (2010)
(with
Richard R. Fabsitz
and
others
)
Incidental Findings in Imaging Research: Evaluating Incidence, Benefit and Burden, 170 Archives of Internal Medicine 1525-32 (2010)
(with
Nicholas M. Orme
)
Developing U.S. Oversight Strategies for Nanobiotechnology: Learning from Past Oversight Experiences, 37 Journal of Law, Medicine & Ethics 688-705 (2009)
(with
Jordan Paradise
,
Jennifer Kuzma
,
Aliya Kuzhabekova
,
Alison W. Tisdale
,
Efrosini Kokkoli
and
Gurumurthy Ramachandran
)
Gene Therapy Oversight: Lessons for Nanobiotechnology, 37 Journal of Law, Medicine & Ethics 659-684 (2009)
(with
Rishi Gupta
and
Peter Kohlhepp
)
Confronting Physician-Assisted Suicide and Euthanasia: My Father's Death, 38 Hastings Center Report 23-26 (Sept./Oct. 2008)
An Integrated Approach to Oversight Assessment for Emerging Technologies, 28 Risk Assessment 1197-1220 (2008)
(with
Jennifer Kuzma
,
Jordan Paradise
,
Gurumurthy Ramachandran
,
Jee-Ae Kim
and
Adam Kokotovich
)
Developing Oversight Frameworks for Nanobiotechnology, 9 Minnesota Journal of Law, Science & Technology 399 (2008)
(with
Jordan Paradise
,
Gurumurthy Ramachandran
,
Efrosini Kokkoli
,
Ralph Hall
and
Jennifer Kuzma
)
Incidental Findings in CT Colonography: Literature Review and Survey of Current Research Practice, 36 Journal of Law, Medicine & Ethics 320-31 (2008)
(with
Hassan Siddiki
,
J.G. Fletcher
,
Beth McFarland
,
Nora Dajani
,
Nicholas Orme
,
Barbara Koenig
and
Marguerite Strobel
)
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations, 36 Journal of Law, Medicine & Ethics 219-48 (2008) (with others)
Neurolaw: The Big Question, 8 American Journal of Bioethics 21-22 (Jan. 2008)
Practical Approaches to Incidental Findings in Brain Imaging Research, 70 Neurology 384-90 (2008) (with others)
The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties, 36 Journal of Law, Medicine & Ethics 361-83 (2008)
(with
Jordan Paradise
and
Charlisse Caga-anan
)
Genetic Testing and the Future of Disability Insurance: Ethics, Law & Policy, 35 Journal of Law, Medicine & Ethics 6-32 (2007) (special supp. to v.35:2)
(with
Jeffrey P. Kahn
)
Doctor and Patient: An Unfinished Revolution, 6 Yale Journal of Health Policy, Law & Ethics 485-500 (2006)
Incidental Findings in Brain Imaging Research, 311 Science 783-84 (2006) (with others)
Assessing Physician Compliance with the Rules for Euthanasia and Assisted Suicide, 165 Archives of Internal Medicine 1677-79 (2005)
Physician-Assisted Suicide, 21 Clinics in Geriatric Medicine 179-92 (Linda L. Emanuel ed., Palliative Care II: Improving Care, 2005)
Ethics Committee of the American Society for Reproductive Medicine, Informing Offspring of their Conception by Gamete Donation, 81 Fertility and Sterility 527-31 (2004) (Committee member)
Law & Bioethics: From Values to Violence, 32 Journal of Law, Medicine & Ethics 293-306 (2004)
Using Preimplantation Genetic Diagnosis to Create a Stem Cell Donor: Issues, Guidelines & Limits, 31 Journal of Law, Medicine & Ethics 327-39 (2003)
(with
Jeffrey P. Kahn
and
John E. Wagner
)
Toward a Systemic Theory of Informed Consent in Managed Care, 35 Houston Law Review 1631-81 (1999)
Foreword: Facing Death, 82 Minnesota Law Review 885-93 (1998)
Pragmatism in the Face of Death: The Role of Facts in the Assisted Suicide Debate, 82 Minnesota Law Review 1063-1101 (1998)
Ban Cloning? Why NBAC is Wrong, 27 Hastings Center Report 12-15 (Sept./Oct. 1997)
A Professional Response to Demands for Accountability: Practical Recommendations Regarding Ethical Aspects of Patient Care, 124 Annals of Internal Medicine 240-49 (1996) (with Linda L. Emanuel for the Working Group on Accountability) (Working Group member)
Foreword: Bioethics From Mirror to Window, 15 St. Louis University Public Law Review 183-89 (1996)
Physician-Assisted Suicide in the Context of Managed Care, 35 Duquesne Law Review 455-79 (1996)
Beyond "Genetic Discrimination": Toward the Broader Harm of Geneticism, 23 Journal of Law, Medicine & Ethics 345-53 (1995)
Health Care Reform and the Future of Physician Ethics, 24 Hastings Center Report 28-41 (Mar./Apr. 1994)
Quality Assessment of Ethics in Health Care: The Accountability Revolution, 20 American Journal of Law & Medicine 105-28 (1994)
Shifting Paradigms in Bioethics and Health Law: The Rise of a New Pragmatism, 20 American Journal of Law & Medicine 395-415 (1994)
Decisions Near the End of Life: Professional Views on Life-Sustaining Treatments, 83 American Journal of Public Health 14-23 (1993) (with others)
Toward a Theory of Process, 20 Law, Medicine & Health Care 278-90 (1993)
Final Exit: The End of Argument, 22 Hastings Center Report 30-33 (Jan./Feb. 1992)
Ethics Committees and Due Process: Nesting Rights in a Community of Caring, 50 Maryland Law Review 798-858 (1991)
Sources of Concern About the Patient Self-Determination Act, 325 New England Journal of Medicine 1666-71 (1991) (with others)
Toward an Expanded Vision of Clinical Ethics Education: From the Individual to the Institution, 1 Kennedy Institute of Ethics Journal 225-45 (1991) (with others)
Nancy Beth Cruzan: In No Voice At All, 20 Hastings Center Report 38-41 (Jan./Feb. 1990)
"Near Death" -- In the Moment of Decision, 322 New England Journal of Medicine 208-10 (1990)
Holding the Line on Euthanasia, 19 Hastings Center Report 13-15 (Jan./Feb. 1989)
Conflict Between Doctor and Patient, 16 Law, Medicine & Health Care 197-203 (1988)
The Professions: Public Interest and Common Good, 17 Hastings Center Report 3-11 (Feb. 1987)
(with
Bruce Jennings
and
Daniel Callahan
)
Enforcing Surrogate Motherhood Agreements: The Trouble with Specific Performance, 4 New York Law School Human Rights Annual 375-412 (1987)
Trying Not to Talk Forever: A Tool for Change, 15 Law, Medicine & Health Care 248-53 (1987/88)
Ethics Committees in the Courts, 16 Hastings Center Report 12-15 (June 1986)
HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs, 256 JAMA 1768-74 (1986)
(with
Ronald Bayer
and
Carol Levine
)
Public Involvement in Medical Ethics, A Model for Government Action, 310 New England Journal of Medicine 627-32 (1984)
(with
Morris B. Abram
)

Book Chapters

Liability Implications of Direct-to-Consumer Genetic Testing, in Consumer Genetic Technologies: Ethical and Legal Considerations 15-25 (I. Glenn Cohen, Nita A Farahany, Henry T Greely, Carmel Schachar, eds., Cambridge University Press, 2021)
(with
Gary E. Marchant
,
Mark Barnes
and
Ellen W. Clayton
)
Generalizable Architectures and Principles of Informatics for Scalable Personalized and Precision Medicine (PPM) Decision Support, in Personalized and Precision Medicine Informatics: A Workflow-Based View 277-303 (Terrence Adam &  Constantin Aliferis, eds., Springer, 2020)
(with
Steven G. Johnson
,
Pamala Jacobson
,
Kingshuk K. Sinha
,
Douglas Yee
and
Constantin Aliferis
)
The Rise of Patient-Driven Research on Biospecimens and Data: The Second Revolution, in Specimen Science: Ethics and Policy Implications 317-34 (Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen & Suzanne M. Rivera, eds., MIT Press, 2017)
(with
Isaac S. Kohane
)
Incidental Findings in Neuroscience Research: A Fundamental Challenge to the Structure of Bioethics and Health Law, in Oxford Handbook of Neuroethics 623-34 (Judy Illes & Barbara J. Sahakian, eds., Oxford University Press, 2011)
Should We Offer Predictive Tests for Fatal Inherited Diseases and, If So, How?, in Ethical Dilemmas in Neurology 22-40 (Adam Zeman & Linda L. Emanuel, eds., W.B. Saunders, 2000)
(with
Thomas G. Horejsi
)
Advocating for Patients in Managed Care: Commentary, in Ethical Challenges in Managed Care: A Casebook 219-26 (Karen Gervais et al., eds., Routledge, 1999)
Erasing Difference: Race, Ethnicity, and Gender in Bioethics, in Embodying Bioethics: Recent Feminist Advances 65-81 (Laura M. Purdy & Anne Donchin, eds., Rowman and Littlefield, 1998)
Facing Assisted Suicide and Euthanasia in Children and Adolescents, in Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide 92-119, 274-94 (Linda L. Emanuel, ed., Harvard University Press, 1998)
Physician-Assisted Suicide, Abortion, and Treatment Refusal: Using Gender to Analyze the Difference, in Physician-Assisted Suicide 167-201 (Robert Weir, ed., Indiana University Press, 1997)
Gender, Feminism, and Death: Physician-Assisted Suicide and Euthanasia, in Feminism & Bioethics: Beyond Reproduction 282-317 (Susan M. Wolf, ed., Oxford University Press, 1996)
Introduction: Gender and Feminism in Bioethics, in Feminism & Bioethics: Beyond Reproduction 3-43 (Susan M. Wolf, ed., Oxford University Press, 1996)
Beyond the Double Agent: Moving Toward an Ethics of Case Management, in Ethical Conflicts in the Management of Home Care: The Case Manager's Dilemma 59-68 (Rosalie A. Kane & Arthur L. Caplan, eds., Springer Publishing, 1993)

Book Reviews

Book Review, 357 New England Journal of Medicine 426-27 (2007) (reviewing Bethany J. Spielman, Bioethics in Law (Humana Press, 2007))
Book Review, 10 Constitutional Commentary 502-9 (1993) (reviewing Frances Myrna Kamm, Creation and Abortion: A Study in Moral and Legal Philosophy (Oxford University Press, 1992))
Book Review, 102 Ethics 671-72 (1992) (reviewing Surrogate Motherhood: Politics and Privacy (Larry Gostin, ed., Indiana University Press, 1990)

Edited Symposia & Journals

LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application, 48 Journal of Law, Medicine & Ethics 7-160 (2020)
(with
Ellen Wright Clayton
and
Frances Lawrenz
)
The Future of Informed Consent in Research and Translational Medicine, 46 Journal of Law, Medicine & Ethics 7-129 (2018) (co-editor)
(with
Ellen Wright Clayton
and
Frances Lawrenz
)
Return of Genomic Research Results to a Participant’s Family, Including After Death, 43 Journal of Law, Medicine & Ethics 437-593 (2015) (co-editor)
(with
Barbara A. Koenig
and
Gloria Petersen
)
Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, 14 Genetics in Medicine 355-496 (2012) (co-editor)
(with
Brian Van Ness
and
Frances Lawrenz
)
Nanodiagnostics and Nanotherapeutics : Building Research Ethics & Oversight, 40 Journal of Law, Medicine & Ethics 712-864 (2012) (co-editor)
(with
others
)
Governance of Nanobiotechnology, 13 Journal of Nanoparticle Research 1341-1812 (2011) (co-editor)
(with
Leili Fatehi
,
Gurumurthy Ramachandran
and
Jennifer Kuzma
)
Developing Oversight Approaches to Nanobiotechnology: The Lessons of History, 37 Journal of Law, Medicine & Ethics 535-789 (2009) (co-editor)
(with
Gurumurthy Ramachandran
,
Jennifer Kuzma
and
Jordan Paradise
)
Managing Incidental Findings in Human Subjects Research: From Imaging to Genomics, 36 Journal of Law, Medicine & Ethics 216-383 (2008) (co-editor)
(with
Jordan Paradise
,
Charles A. Nelson
,
Jeffrey P. Kahn
and
Frances Lawrenz
)
Genetic Testing and Disability Insurance: Ethics, Law & Policy, 35 Journal of Law, Medicine & Ethics 5-89 (2007) (special supp. to v.35:2) (co-editor)
(with
Jeffrey P. Kahn
)
The Responsible Use of Racial and Ethnic Categories in Biomedical Research: Where Do We Go From Here?, 34 Journal of Law, Medicine & Ethics 483-558 (2006) (editor)

Entries in Reference Works

Euthanasia, in The World Book Encyclopedia (World Book, Inc., 2008 ed.)
Living Will, in The World Book Encyclopedia (World Book, Inc., 2008 ed.)
Iatrogenic Illness and Injury, in 3 Encyclopedia of Bioethics 1187-91 (Warren T. Reich, ed., Macmillan Publishing Co., 2d ed., 1995)

Editorials, Commentary & Letters

Defending the Return of Results and Data, 362 Science 1255-1257 (Dec. 14, 2018) (letter)
(with
Barbara J. Evans
)
What To Do about Too Much Medical Information?, Minneapolis Star Tribune, Dec. 12, 2013 (op-ed)
Return of Results in Genomic Biobank Research: Ethics Matters, 15 Genetics in Medicine 157-59 (2013) (letter)
Court Ruling Doesn't Answer Assisted Suicide Questions, St. Paul Pioneer Press, Jan. 29, 2006 (op-ed)
The Incidentalome, 296 JAMA 2800-01 (2006) (letter)
(with
Jeffrey P. Kahn
,
Frances Lawrenz
and
Charles A. Nelson
)
What "Million Dollar Baby" Says About Disability and Death, St. Paul Pioneer Press, Feb. 13, 2005 (op-ed)
Preimplantation Testing to Produce an HLA-Matched Donor Infant, 292 JAMA 803-4 (2004) (letter)
(with
John E. Wagner
,
Jeffrey P. Kahn
and
Jeffrey M. Lipton
)
Creating Embryos for Research, New York Times, June 2, 2002 (letter)
Negative Outcomes of Infant Home Apnea Monitoring, 286 JAMA 304 (2001) (letter)
Supreme Court Decision Rightly Forces More Talk About Life's End, Minneapolis Star Tribune, July 6, 1997 (op-ed)
Why the Bioethics Commission is Wrong to Seek a Ban on Cloning, Minneapolis Star Tribune, June 19, 1997 (commentary)
Key to Clinton Health Plan Is Choice that Works at Every Level, Minneapolis Star Tribune, Oct. 27, 1993 (commentary)
A Right to Exit?, 22 Hastings Center Report 45 (Nov./Dec. 1992) (reply to letters)
The Patient Self-Determination Act, 326 New England Journal of Medicine 1502-3 (1992) (reply to letters)
Rights of State and Family Clash in Forced-Immunization Cases, National Law Journal, May 13, 1991, at 28
(with
Jennifer Trahan
)
More Women Doctors Will Make Doctors' Lives More Human, Newsday, Feb. 6, 1990 (op-ed)
Decision-Making in "Near Death," 322 New England Journal of Medicine 1606 (1990) (reply to letters)
The Health Care Needs of Homeless and Runaway Youths, 263 JAMA 811 (1990) (letter)
The Right to Die, 109 Annals of Internal Medicine 79 (1988) (letter)
Progress on Three Fronts, New Jersey Law Journal, July 16, 1987, at 23
Humane Rules on Surrogate Motherhood, Morristown Daily Record, Jan. 25, 1987 (op-ed)
Mandatory Screening for HIV Antibody, 257 JAMA 625 (1987) (reply to letter)
(with
Ronald Bayer
and
Carol Levine
)
New York Avoids Dealing with Death, New York Times, Nov. 30, 1985 (op-ed)
Public Involvement in Medical Ethics, 311 New England Journal of Medicine 264 (1984) (reply to letters)
(with
Morris B. Abram
)

Other Publications & Abstracts

Learning from COVID-19 Triage Schemes to Face the Next Public Health Emergency, 72 Journal of the American Geriatrics Society 1298-1301 (2024)
(with
Erin S. DeMartino
,
Jackson S. Ennis
and
Daniel P. Sulmasy
)
Ethics Support During COVID-19: The Minnesota COVID Ethics Collaborative, 104(1) Minnesota Medicine 10-11 (2021)
(with
Debra DeBruin
)
What Has Covid-19 Exposed in Bioethics? Four Myths, Hastings Center Report 3-4 (May-June 2021)
Introduction: The Crucial Role of Law in Supporting Successful Translation of Genomics into Clinical Care, 48 Journal of Law, Medicine & Ethics 7-10 (2020)
(with
Ellen Wright Clayton
and
Frances Lawrenz
)
It Is Time to Consult the Children: A Mother Who Faced Mitochondrial Replacement and Her Son Consider the Limits of Genetic Modification, 20:8 The American Journal of Bioethics 41-43 (2020)
(with
Jacob S. Borgida
)
Introduction: The Past, Present, and Future of Informed Consent in Research and Translational Medicine, 46 Journal of Law, Medicine & Ethics 7-11 (2018)
(with
Ellen Wright Clayton
and
Frances Lawrenz
)
Returning Results in Biobank Research: Global Trends and Solutions, 21 Genetic Testing and Molecular Biomarkers 128-31 (2017) (guest editorial)
(with
Eva De Clercq
,
Jane Kaye
,
Barbara A. Koenig
and
Bernice S. Elger
)
 Introduction: Return of Research Results: What about the Family?, 43 Journal of Law, Medicine & Ethics 437-39 (2015)
What Adrienne Knew: Living Bioethics, 44(2) Hastings Center Report 17-19 (2014)
Abstract, International Governance Approaches to Whole Genome Sequencing: Who Governs Return of Results & Incidental Findings, Conference on Governance of Emerging Technologies: Law, Ethics & Policy, Arizona State University (2013)
(with
Rebecca Boxhorn
)
Abstract, Return of Actionable Results to Kin in a Pancreatic Cancer Biorepository: Views of Probands and Family Members, American Society of Human Genetics Annual Meeting (2012)
(with
Barbara A. Koenig
and
Gloria Petersen
)
The Challenge of Nanomedicine Human Subjects Research: Protecting Participants, Workers, Bystanders, and the Environment, 40 Journal of Law, Medicine & Ethics 712-15 (2012)
Introduction: Designing Nanobiotechnology Oversight, 13 Journal of Nanoparticle Research 1341-1343 (2011)
(with
Leili Fatehi
,
Gurumurthy Ramachandran
and
Jennifer Kuzma
)
Abstract, Managing Individual Research Results of Health Importance, 4th National Conference on Genomics and Public Health (2010)
(with
Brian Van Ness
and
others
)
Introduction: MJLST at 5 Years, the Consortium at 10, 11 Minnesota Journal of Law, Science & Technology 1-5 (2010)
Introduction: The Challenge of Developing Oversight Approaches to Nanobiotechnology, 37 Journal of Law, Medicine & Ethics 543-545 (2009)
(with
Jordan Paradise
,
Jennifer Kuzma
,
Gurumurthy Ramachandran
and
Efrosini Kokkoli
)
Abstract, An Integrated Approach to Oversight for Emerging Technologies, Gordon Conference on New Frontiers in Science and Technology Policy (2008)
(with
Jennifer Kuzma
,
Jordan Paradise
,
Jee-Ae Kim
,
Adam Kokotovich
and
Gurumurthy Ramachandran
)
Introduction: The Challenge of Incidental Findings, 36 Journal of Law, Medicine & Ethics 216-18 (2008)
Risks Posed By New Biomedical Technologies: How Do We Analyze, Communicate and Regulate Risk?, 13 Lahey Clinic Medical Ethics Journal 5-8 (Fall 2006) (edited transcript of a May 2006 symposium presented by the University of Minnesota's Consortium on Law and Values in Health, Environment & the Life Sciences, co-sponsored by the University's Joint Degree Program in Law, Health & the Life Sciences; Center for Bioethics; & Center for Environment and Health Policy)
(with
Jordan Paradise
)
Introduction: Debating the Use of Racial and Ethnic Categories in Research, 34 Journal of Law, Medicine & Ethics 483-86 (2006)
Bioethics Matures: The Field Faces the Future, 35 Hastings Center Report 22-24, (July/Aug. 2005)
(with
Jeffrey P. Kahn
)
Death & Dying in America: Schiavo's Implications, Minnesota Medicine, June 2005, at 34-35
Are We Making Progress in the Debate Over Racial and Ethnic Categories in Biomedical Research?, 37 Nature Genetics 789-90 (2005)
The Minnesota Journal of Law, Science & Technology: A New Kind of Interdisciplinarity, 6 Minnesota Journal of Law, Science & Technology i-vi (2004)
Discrimination Against the Infertile: The Supreme Court Speaks, Minnesota Medicine, Oct. 1998, at 49-52
Should There Be an Age Limit for Recipients of Donor Oocytes? No, OB/GYN News, Aug. 15, 1997, at 12
The Ethical Challenge of Managed Care: A Critique of the AMA's Stance, Minnesota Medicine, June 1996, at 29-32
Constitutional Controversy over Physician-Assisted Suicide and Euthanasia, The Center for Biomedical Ethics Newsletter (University of Minnesota), Summer 1995, at 1-2
Discussion: Euthanasia and the Care of Dying Patients (W. Bradford Patterson and Ezekiel J. Emanuel, eds.), 7 Journal of Clinical Oncology 1516-21 (1994)
Dreams, 22 Hastings Center Report (July/Aug. 1992) ("At the Center" feature)
Due Process in Ethics Committee Case Review, 4 HEC Forum 83-96 (1992)
Honoring Broader Directives, 21 Hastings Center Report s8-s9 (special supp., Sept./Oct. 1991)
After Cruzan: Preserving the Right to Refuse Unwanted Treatment, 15 American Academy of Psychiatry and the Law Newsletter 82-84 (1990)
La Promulgazione di Norme Giuridiche per Regolamentare le Tecnologie Riproduttive (The Creation of Legal Standards to Govern Reproductive Technologies), in Scienza ed Etica Nella Centralita dell'Uomo 244-47 (Paolo Cattorini, ed., FrancoAngeli, 1990)
On the Road, 19 Hastings Center Report (Nov./Dec. 1989) ("At the Center" feature)
"Maybe Together...": A Lawyer Among Allies, 19 Hastings Center Report (Mar./Apr. 1989) ("At the Center" feature)
For Lack of a Crystal Ball and a Second Self: The Real World of Surrogate Decisions, 5 Decisions Near the End of Life 18 (Education Development Center, 1989)
The Evolution of the Right to Refuse Treatment, 1 Decisions Near the End of Life 10 (Education Development Center, 1989)
The Law, Too, Urges Planning, 3 Decisions Near the End of Life 22 (Education Development Center, 1989)
Trying to Work it Out, 6 Decisions Near the End of Life 6 (Education Development Center, 1989)
When Doctors Dissent: The Limits of Objection and Withdrawal, 2 Decisions Near the End of Life 20 (Education Development Center, 1989)
Doing Ethics in Italy, 18 Hastings Center Report 13-14 (special supp., Aug./Sept. 1988)
(with
Strachan Donnelley
)
The Persistent Problem of PVS, 18 Hastings Center Report 26 (Feb./Mar. 1988)
Life Versus Religious Liberty: The Case of Jamal Burke -- Commentary, in Casebook on the Termination of Life-Sustaining Treatment and the Care of the Dying 52-54 (Cynthia B. Cohen, ed., Indiana University Press & The Hastings Center, 1988)
Whose Decision? The Case of Roy Gantos -- Commentary, in Casebook on the Termination of Life-Sustaining Treatment and the Care of the Dying 4-7 (Cynthia B. Cohen, ed., Indiana University Press & The Hastings Center, 1988)
Reaching Judges, 17 Hastings Center Report (June 1987) ("At the Center" feature)