Presentations

2007

"Research Ethics," Training sessions for Vanderbilt University Medical Students, Nashville, TN (January 9 and 11, 2007). (LC)

"Doctor Frankenstein, I Presume?  Why the Investigator-Subject Relationship Is a Problem for the Physician-Patient Relationship, and Vice Versa," Invited lecture, Translational Science Institute Seminar Series, Wake Forest University School of Medicine, Winston-Salem, NC (October 10, 2007) (NK)

"Language, Models, and Meaning in Medicine and Science," Invited presentation, Hot Topics Community Forum: Language, Technology and You: Social and Moral Controversies Transforming Public Life, Wake Forest University Graduate School of Arts & Sciences, Winston-Salem, NC (October 16, 2007) (NK)

2006

"Research Ethics," Training sessions for Vanderbilt University Medical Students, Nashville, TN (January 10 and 12, 2007). (LC)

"Talking about Benefits in Clinical Research: An Analysis and Assessment," Invited Lecture, Wake Forest University School of Medicine, Winston-Salem, NC (March 14, 2006). (NK)

"Doctor Frankenstein, I Presume? Why the Investigator-Subject Relationship is a Problem for the Physician-Patient Relationship, and Vice Versa," Invited Lecture, Speas Colloquium, Davidson College, Davidson, NC (March 17, 2006). (NK)

"Assessing Subjects' Therapeutic Misconception in Early Phase Clinical Trials: What's the Problem and Can We Fix It?" Invited Lecture, Medical Humanities Hour, University of Maryland Medical Center, Baltimore, MD (March 30, 2006). (GH)

"Vulnerability and the Therapeutic Misconception," Training Session for Vanderbilt Medical Center IRB.  Nashville, TN (LC)

"Ethical Issues in Gene Transfer Research:  Informed Consent and More," Invited Keynote Lecture, CLINIGENE Kick-Off Conference, Annecy, France (April 1, 2006). (NK)

"Informed Consent and the Therapeutic Misconception in Hospital-Based Clinical Trials:  Why Dotting the 'I's and Crossing the 'T's Matters," Invited Plenary Lecture, Second Annual Catholic Healthcare West Human Research Protection Office Research Conference, Phoenix, AZ (April 6, 2006). (NK)

"Risks of Harm and Potential Benefits in Research:  A Primer," Invited Lecture, Clinical Anesthesiology Research Endeavors Annual Retreat, Durham, NC (April 7, 2006). (NK)

"Ethical Issues in Gene Transfer Research: What Investigators, Sponsors, and Oversight Bodies Need to Know," Panelist, Procedural and Substantive Issues in Oversight of Gene Transfer Research: IRB Review, IBC Review, and Ethics, BIO 2006, Chicago, IL (April 10, 2006). (NK)

"Reaching Consensus on the Conceptual Definition of Therapeutic Misconception,"  Presentation for Symposium on Therapeutic Misconception in Clinical Research, American Psychological Association Annual Conference, Toronto, Canada (May 22, 2006). (BBR)

"Therapeutic Misconception in Clinical Research: How Big an Issue?"  Presentation to Vanderbilt University General Clinical Research Center Investigators, Nashville, TN (August 4, 2006). (LC)

"Understanding & Consent in Research:  Lessons from Gene Transfer", Invited Lecture, Rush University Medical Center, Chicago, IL (October 3, 2006).

"Ethical Issues in Gene Transfer Research:  Informed Consent and More," Invited Speaker, ESGT Annual Meeting, Athens, Greece (Nov. 10, 2006). (NK)

"Potential Benefits and Risks of Harm:  Understanding in Context," Invited "Risk" Panel Presentation, PRIM&R 2006 Annual Human Research Protections Programs Conference, A Commitment to Ethical Research, Washington, DC (Nov. 17, 2006). (NK)

2005

"Therapeutic Misconception in Early Phase Gene Transfer Trials," Presentation, Sociology of Bioethics Mini-Conference, Eastern Sociological Society Annual Meeting, Georgetown University, Washington, DC (March 19, 2005). (GH)

"Children in Gene Transfer Trials:  Design, Benefit, and Consent Issues," Presentation for Scientific Symposium on Informed Consent and Children, Annual Meeting of the American Society of Gene Therapy, America’s Center, St. Louis, MO (June 3, 2005). (NK)

“Therapeutic Misconception in Early Phase Gene Transfer Trials,” Presentation, Annual Meeting of the American Society of Gene Therapy, America’s Center, St. Louis, MO (June 5, 2005). (GH)

“Risks of Harm & Potential Benefits in Research: A Primer,” Invited Lecture, Emerging Issues in Research with Human Subjects Conference, National Institute of Environmental Health Sciences, Research Triangle Park, NC (September 23, 2005). (NK)

"The Challenging Role of the Study Coordinator," Fall Seminar, Greater Charlotte NC Chapter, Association of Clinical Research Professionals (ACRP), Charlotte, NC  (October 14, 2005). (AD) 

"Scientific Promise/ Scientific Uncertainty,"  Presentation, Sociology Department Colloquium, University of North Carolina, Chapel Hill, NC (April 21, 2004).  (GH, BBR)

"Clinical Trial Guidance and Oversight:  Lessons from Gene Transfer Research,"  Plenary panel session, The Fourth Annual Medical Research Summit, Baltimore, MD (April 22, 2004).  (NK)

"Research Using Patients:  Setting Standards for Direct Benefit," Workshop session, Bioethics Summer Retreat, Wintergreen, VA (June 2004). (NK)

"Informed Consent in Gene Transfer Research: Report of a Study" and "Genetic Research and the Germline:  Accident or Desire?" Panel presentations, International ELSAGEN Conference and the 18th European Conference on Philosophy of Medicine and Health Care:  "Genetics and Health Care", Reykjavik, Iceland (August 26, 2004). (NK)

"Informed Consent in Clinical Trials: Lessons from a Content Analysis of Gene Transfer Consent Forms," Invited presentation, Hoffman-La Roche, Basel, Switzerland (October 13, 2004).  (NK)

Presentation to CF coordinators, North American Cystic Fibrosis Conference, St. Louis, MO (October 16, 2004. (BW)

"Hope in Clinical Trials," Panel presentations, ASBH Annual Meeting, Philadelphia, PA (October 30, 2004). (LC, AD, NK, SH)

"The Therapeutic Misconception:  New Empirical Research," Panel presentation, ASBH Annual Meeting, Philadelphia, PA (October 31, 2004). (GH)

2003

“Studying Benefit in Gene Transfer Research: Preliminary Data from Consent Forms and Interviews with Investigators and Subjects," Invited Presentation, Duke University Genome Ethics, Law, and Policy Faculty Colloquium, Durham, NC (Feb. 14, 2003). (NK, GH)

"Coordination of IBC and Institutional Review Board Reviews:  Respective Roles and Responsibilities," Break-out session, The Future Face of Institutional Biosafety Committees:  Evolving Roles and Responsibilities, Upcoming Challenges and Opportunities, a Professional Development Conference, San Diego, CA  (Feb. 21, 2003). (DN)

"What GTR Consent Forms Say, and Why It Matters," Invited seminar, Johns Hopkins Bloomberg School of Public Health and The Phoebe R. Berman Bioethics Institute, Johns Hopkins University, Baltimore, MD (March 3, 2003). (NK)

"Balancing Competing Advocacies for Patient, Subject and Study: Analysis of Interviews with Study Coordinators and Their Subjects," Paper presentation, ACRP Conference, Philadelphia, PA (Apr. 7, 2003). (AD, GH)

"Informed Consent in Hemophilia Gene Transfer Research," Invited lecture, National Hemophilia Foundation Workshop on Gene Therapies for Hemophilia, La Jolla, CA (April 26, 2003). (NK)

"What Consent Forms Say and What Researchers and Subjects Expect in Gene Transfer Research," Recombinant DNA Advisory Committee Meeting, Bethesda, MD (June 19, 2003). (NK, GH)
Webcast of RAC meeting:
            Click "Thursday June 19 morning before break" to see our presentation.
            Click "Thursday June 19 morning after break" for comments and discussion from on how our data inform the
            guidance document created by RAC's Informed Consent Working Group.

"Oversight and Harm-Benefit Information in Gene Transfer Research," invited plenary presentation,
ABA / AMA / AAAS Conference on Genetics and the Law, Chapel Hill, NC (October 3, 2003). (NK)

"Therapeutic Misconception and Informed Consent," Invited Lecture, Association of Clinical Research Professionals, Research Triangle Park, NC (October 25, 2003). (BBR)

"Beneficence," Presentation in Plenary Panel Session, PRIM&R 2003 Annual IRB Conference, Washington, DC, (December 6, 2003). (NK)

2002

RAC Meeting, Preliminary Data Report to the RAC on IRB Interview Data and Consent Form Coding, Bethesda, MD, (Mar., 2002). (NK)

Social Genomics Meeting, UNC-Chapel Hill Center for Genetics, Mar. 1, 2002 (presentation on grant). (GH)

“Accident and Desire:  Germline Interventions and Effects in Clinical Research,” Germ-Line Interventions and Human Research Ethics Colloquium Presentation, Washington University, St. Louis, MO (April 5, 2002). (NK)

“IRBs and Gene Transfer Research” and “Ethical Issues in Gene Transfer Research,” Clinical Gene Transfer Review Course, American Society of Gene Therapy Annual Meeting, Boston, MA (June 4-5, 2002). (NK)

“What Consent Forms Say (And Why It Matters),” Panel Presentation, Health Law Teachers 26th Annual Meeting, Indianapolis, IN (June 7, 2002). (NK)

Bioethics Summer Retreat, Lake Placid, NY, June 2002 (workshop session). (NK)

“Clinical Trials and Genetic Disease:  Policy Insights from Gene Transfer Research,” Greenwood Genetic Center Faculty Retreat, Greenville, SC (Sept. 6, 2002). (NK)

"How IRBs Understand Benefits in Research," Paper Presentation, ASBH Annual Meeting, Baltimore, MD (Oct. 25, 2002). (LC)

"What Consent Forms Say -- And Why It Matters," Paper Presentation, ASBH Annual Meeting, Baltimore, MD (Oct. 26, 2002). (NK)

"A Moment in Time. Thinking about Gene Transfer Research: Have Things Changed Since 1999?" Paper Presentation, ASBH Annual Meeting, Baltimore, MD (Oct. 27, 2002). (AD)

"Clinical Investigator/ Patient-Subject:  Can Social Science Help Us Understand the 'Dual Role'?" Paper Presentation, ASBH Annual Meeting, Baltimore, MD (Oct. 27, 2002). (GH)

“Advice and Consent:  Ethics and Gene Transfer Research for Providers”, Preconference Medical Symposium, National Hemophilia Foundation Annual Meeting, Lake Buena Vista, FL (October 31, 2002). (NK)

“Assessing Benefits in Gene Transfer Research:  A Risky Business?” Poster Presentation, PRIM&R Annual Meeting, San Diego, CA (Nov. 16-19, 2002). (DN, LC) Abstract (pdf)

“IRB Review of Gene Transfer Research:  Have Things Changed Since Jesse Gelsinger?” Poster Presentation, PRIM&R Annual Meeting, San Diego, CA (Nov. 16-19, 2002). (DN, AD) Abstract (pdf)

“What Research Consent Forms Say, And Why It Matters,” Invited Lecture, Medical Humanities Hour, University of Maryland Medical Center, Baltimore, MD (Nov. 21, 2002). (NK)

2001

“Ethical Issues in Gene Transfer Research,” Human Genome Lecture Series, National Human Genome Research Institute, NIH, Bethesda, MD (Jan. 18, 2001). (NK)

“Relationships in Research,” AAAS Short Course on Racial and Ethnic Minorities as Research Subjects, Tuskegee, AL (May 19, 2001). (NK)

“Ethical Issues in Gene Transfer Research,” Clinical Gene Transfer Training Course American Society of Gene Therapy Annual Meeting, Seattle, WA  (May 30, 2001). (NK)

“Decisionmaking About Gene Transfer Research,” Panel Presentation, Health Law Teachers 25th Annual Meeting, Boston, MA (June 2, 2001). (NK)

“Research Advocacy and Health Care Justice,” Bioethics Summer Retreat, Jiminy Peak, MA (June 20, 2001). (NK)

"Nurse Rivers' Dilemmas:  Research Relationships, Ethics, and the Study Coordinator," Panel Presentation ASBH Annual Meeting, Nashville TN (Oct. 25, 2001). (GH, AD, BW)

“Decisionmaking About Gene Transfer Research,” Plenary Panel Presentation, PRIM&R Annual Meeting, Boston, MA (Dec. 4, 2001). (NK)

“IRBs and the RAC,” New RAC Member Orientation Session, Bethesda, MD (Dec. 5, 2001). (NK)

2000

“Safety Issues from the Gene Transfer Experience,” Working Conference on Institutional Review Boards and Data & Safety Monitoring Committees in the Monitoring of Clinical Trials, Duke Clinical Research Institute, Durham, NC (May 11, 2000). (NK)

“Benefit in Clinical Trials,” Panel Presentation, Health Law Teachers Annual Meeting, Cleveland, OH (June 9, 2000). (NK)

“Risk-Benefit Assessment in Gene Transfer Research: Ethical and Policy Considerations,” Plenary Panel Presentation, Toxicology Forum 26th Annual Summer Meeting, Aspen, CO (June 14, 2000). (NK)

“Ethics in Clinical Research,” Panel Presentation, Bioethics Summer Retreat, Asilomar. CA (June 23, 2000). (NK)

“Defining and Describing Benefit in Clinical Research,” Western IRB 16th Annual Training Seminar, Seattle, WA (August 25, 2000). (NK)

“Patients as Subjects,” Panel Presentation, ASBH Annual Meeting, Salt Lake City, UT (October 29, 2000). (NK)

1999

“A Reasonable Chance of Benefit in Clinical Research,” Panel Presentation, ASBH Annual Meeting, Philadelphia, PA (October 29, 1999). (NK)

“Benefit in Research,” Nijmegen Medical Ethics Colloquium, Department of Ethics, Philosophy, and History of Medicine and Department of Internal Medicine, University of Nijmegen, the Netherlands (November 15, 1999). (NK)

“Defining and Describing Benefit Appropriately in Clinical Trials,” Plenary Panel Presentation, PRIM&R Annual Meeting, Boston, MA (December 6, 1999). (NK)