The Use of Human Tissue and Public Trust: The Chasm between Science and Ethics

Creighton University Center for Health Policy & Ethics

The Use of Human Tissue and Public Trust: The Chasm between Science and Ethics

Monday, September 19, 2011 7:30am (Check in) 8:00am - 4:00pm Program

Creighton University Harper Center Ahmanson Ballroom 602 N. 20th Street Omaha, Nebraska Free & open to the public. Registration required.

Register at http://chpe.creighton.edu Conference sponsors: Creighton University Center for Health Policy & Ethics The U S Department of Health & Human Services Creighton University Department of Medicine and Health Sciences Continuing Education Operations Designed For: Physicians, Physician Assistants, Nurses, Healthcare Educators, Residents, Students, Public Health professionals, other interested healthcare providers and members of the public.

PURPOSE AND OBJECTIVES Purpose: The conference will educate researchers, clinicians, humanists, and members of the public regarding the benefits of research on human tissue while highlighting the connections between trust, trustworthiness, and research integrity.

Objectives: At the completion of this conference the participants should be able to: • Weigh the social benefits of medical knowledge derived from tissue research against competing moral goods such as the protection of cultural traditions and beliefs as well as protection from exploitation.

• Examine the concept of trust, particularly from the perspective of marginalized populations and its importance in the research enterprise.

• Identify gaps in knowledge and values between the science community and the public regarding the use of human tissue.

SCHEDULE The Use of Human Tissue and Public Trust: The Chasm between Science and Ethics Monday, September 19, 2011 7:30 – 8:00 am

Check-in and Continental breakfast

8:00 – 8:15 am

Welcome and Introductions Amy M. Haddad, PhD Captain Jose Belardo, JD, MSW, MS John Galland, PhD Donald Frey, MD

8:15 – 8:30 am

Audience Response to Factual and Attitudinal Questions via Remote Devices

8:30 – 9:15 am

21st Century Biobanking: Aligning Research Goals with Healthcare Goals Kevin T. FitzGerald, SJ, PhD (via video)

9:15 – 10:00 am

Tissues, Trust, and African American History Dayle B. DeLancey, PhD

10:00 – 10:15 am

Break

10:15 – 11:00 am

A Legal Approach to the Use of Human Biological Materials for Research Purposes Marshall Kapp, JD, MPH

11:00 – 11:45 am

Listening to Community Voices: Creating New Models of Governance for Biobanks Barbara A. Koenig, PhD

11:45 am – Noon

Retrieve box lunches and reconvene

Noon – 2:00 pm

Working Lunch - Interactive Workshop by HHS/Office of Research Integrity

2:00 – 2:15 pm

Break

2:15– 3:00 pm

Ethical Issues – Trust and Trustworthiness, Dispelling Myths John R. Stone, PhD, MD

3:00 – 3:45 pm

Bridging the Chasm – Cross Disciplinary Discussion Moderator: Jos Welie, PhD Edward S. Cohn, MD Dayle B. DeLancey, PhD John Galland, PhD Marshall Kapp, JD, MPH Barbara A. Koenig, PhD John R. Stone, PhD, MD

3:45 – 3:55 pm

Audience Response to Factual and Attitudinal Questions via Remote Devices

3:55 – 4:00 pm

Concluding remarks Amy Haddad and Captain Jose Belardo

PRESENTERS COURSE DIRECTOR Amy M. Haddad, PhD Director, Center for Health Policy & Ethics and the Dr. C.C. and Mabel L. Criss Endowed Chair in the Health Sciences Creighton University PRESENTERS Captain Jose Belardo, JD, MSW, MS Acting Regional Health Administrator, Region VII Office of Public Health and Science U.S. Department of Health and Human Services Edward S. Cohn, MD Staff Otolaryngologist Boys Town National Research Hospital Dayle B. DeLancey, PhD Assistant Professor Department of Medical History and Bioethics University of Wisconsin-Madison Donald Frey, MD Vice President of Health Sciences Creighton University

Kevin T. FitzGerald, SJ, PhD Research Associate Professor David Lauler Chair for Catholic Health Care Ethics Center for Clinical Bioethics Georgetown University John Galland, PhD Director, Division of Education and Integrity Office of Research Integrity U.S. Department of Health and Human Services Marshall Kapp JD, MPH Director, Center for Innovative Collaboration in Medicine and Law Professor in the Department of Geriatrics and Courtesy Professor in the College of Law Florida State University Barbara A. Koenig, PhD Professor, Department of Social and Behavioral Sciences, Institute for Health and Aging University of California, San Francisco John R. Stone, MD, PhD Professor, Center for Health Policy and Ethics Creighton University

EDUCATION CREDIT The Creighton University School of Medicine designates this live activity for a maximum of 7.25 AMA PRA Category 1 Credit(s)TM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

This course is approved for 7.25 Contact Hours for Nurses and .72 CEU’s for Iowa Nurses through Iowa Western Community College Iowa Board of Nursing Provider # 6.

Application has been made to the National Commission for Health Education Credentialing, Inc. (NCHEC) for Certified Health Education Specialists (CHES) Category I Continuing Education Contact Hours.

Accreditation Statement: The Creighton University School of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

COMMITTEE MEMBERS PLANNING COMMITTEE:

Amy M. Haddad, PhD, RN; Joan Norris, PhD, RN; Sally C. O’Neill, PhD; Cate Pogge, BA; Helen Shew, MBA, MS; John R. Stone, MD, PhD DISCLOSURE POLICY: It is the policy of Creighton University School of Medicine Continuing Medical Education Division to ensure balance, independence, objectivity and scientific rigor in all its educational activities. All faculty participating in this activity are expected to disclose to the audience any significant financial interest or other relationship he/she has with the manufacturer (s) of any commercial products (s) discussed in an educational presentation.

INFORMATION Registration: includes course materials, continental breakfast and lunch. There is no registration fee to attend.

Cancellation: If you need to cancel your registration, please call 402-280-2646 by September 12, 2011.

Meeting Place and Parking: The Harper Center is located at 602 N. 20th Street. (Note: 20th Street is one-way South.) Parking is available in the surface parking lot immediately south of Harper or in the Visitors’ Parking Lot at the Northeast corner of 24th and Cass Streets.

Lodging: Should you need a hotel, please see www.visitomaha.com for a list of area hotels. The meeting place is near the Old Market and Cuming Street corridor hotels.

Program Accessibility: Creighton University wishes to ensure equal access to its programs, services, and activities and that no individual with special needs is excluded, denied services, segregated or otherwise treated differently because of the absence of auxiliary aids and services. If you are a person with a disability who requires accommodation in order to participate in this program, please contact the Center for Health Policy & Ethics in advance at 402 280 2646 or e-mail hshew@creighton.edu with your request.

For more information: Contact Creighton University Center for Health Policy & Ethics at 402-280-2646. E-mail hshew@creighton.edu

REGISTRATION The Use of Human Tissue and Public Trust: The Chasm between Science and Ethics Monday, September 19, 2011

Please REGISTER BEFORE September 12, 2011.

There is NO REGISTRATION FEE for this conference.

We’d like to hear from you before the conference. What would you like to ask the conference presenters? What confuses or troubles you about the conference topic? Type your questions or comments as you complete your online registration or write in the space below.

3 WAYS TO REGISTER 1. On-line at http://chpe.creighton.edu/ 2. Fax form to 402-280-5735 3. Phone 402-280-2646 Last Name_____________________________ First Name______________________ Middle Int______ Mailing Address_______________________________________________________________________ City_______________________________ State_________ Zip________________ Phone _____________________Fax__________________ Email_____________________________ Department______________________________________ Organization_________________________ For more information about this topic, please come to CHPE’s 21st Women and Health Lecture featuring REBECCA SKLOOT, author of The Immortal Life of Henrietta Lacks. The lecture will be held Thursday, October 6, 2011 at the Joslyn Art Museum. The lecture is free and open to the public; however, online registration is required.

Registration opens August 30, 2011 and may be accessed via http://chpe.creighton.edu