Penn | Center for Bioethics

Center Projects

RESEARCH AREA

Penn bioethics is committed to the view that sound ethical analysis must rest upon a firm empirical foundation. Empirical, interdisciplinary research is a mainstay of the Center's activities. Using surveys, ethnographic studies, historical research, legal analysis and participant-observation, Center faculty have built an impressive array of knowledge about the practices and behaviors that are the real world of clinical care and biomedical research. Ongoing projects focus on key issues such as genetic testing and engineering, informed consent, human subject research, end-of-life care, vaccines, mental health, resource allocation, and transplantation. The faculty's work frequently appears in such prestigious journals as Annals of Internal Medicine, British Medical Journal, Nature, Science, The Hastings Center Report, The Journal of the American Medical Association, American Journal of Bioethics, The Lancet, and The New England Journal of Medicine.

CURRENT PROJECTS

Advancing the Race Dialog: Genes, Forensics, and Medicine
Pamela Sankar, PhD
The major goal of this study is to examine how race and ethnicity are used as variables in medical and forensic genetic research.

Attrition in Radiation Therapy Oncology Trials
Connie Ulrich, PhD, RN, FAAN
A 20 Year Retrospective Review. This study investigates the prevalence of attrition in RTOG clinical trials over a 20 year period (1985-2005) and; 2) to assess individual, organizational, and protocol-related factors associated with attrition in all RTOG treatment studies that were opened to accrual as of January 1, 1985 and have completed accrual and had the primary endpoint published by January 1, 2005.

Bioethics and Biopolitics
Jonathan Moreno, PhD
It has become harder to distinguish between ethics and politics in public discussions about the future of biotechnology. I'm following the ways that these issues are framed by experts and political actors to engage the public.

Bioethics, Sexuality, and Gender Identity
Autumn Fiester, PhD and Lance Wahlert, PhD
Given that there are many pressing ethical issues that lie at the intersections of LGBTQI politics and bioethics, The Project on Bioethics, Sexuality, and Gender Identity aims to create a range of inter-disciplinary forums (on-line, in print, and in-conference) to define this new field and to map-out its bioethical centrality, its implications, and its possibilities. For more information, please visit: www.queerbioethics.org.

The Center for Vaccine Ethics and Policy
The Center for Vaccine Ethics and Policy is a program of the Center for Bioethics of the University of Pennsylvania, the Wistar Institute Vaccine Center, and the Vaccine Education Center at the Children's Hospital of Pennsylvania (CHOP). We believe the ethical imperative for vaccine policy is to accelerate the development and delivery of needed vaccines -- providing safe, affordable and effective access, and producing sustained immunity, for all people at risk regardless of circumstance or geography. For more information, please visit: http://www.centerforvaccineethicsandpolicy.org/

Conflicts of Interest in Clinical Practice Guidelines
James Kirkpatrick, MD
Potential conflicts of interest (PCOI) are a cause for ethical concern in patient care. While conflicts of interest among clinical providers in the community can compromise local care, conflicts which influence clinical practice guideline development can have a national and even international effect. This project analyzes the scope of PCOI among the participants in national guideline writing.

Death is just not what it used to be
A Project from the Resuscitation Science and Bioethics Research Collaborative
James Kirkpatrick, MD
This project reviews the potential changes in the definition of death and criteria and tests used to diagnose death in light of recent advances organ harvesting in resuscitative, neurological and cardiovascular technologies.

Emerging Ethical Issues in Criminal Forensic Genetics
Pamela Sankar, PhD
The major goal of this research is to assess the capacity in the forensic genetics field to respond to the ethical challenges posed by the new technology: forensic DNA phenotyping.

ForensicDNAethics
Pamela Sankar, PhD
The Forensic DNA Phenotyping [FDP] Project at the Penn Center for Bioethics is part of a larger project, Ethical Issues in Criminal Forensic Genetics, which examines the potential benefits and problems associated with using genetics in law enforcement. FDP is a recent development and has had only limited use in law enforcement. Yet this technology that promises to help police scientifically predict a suspect’s identity is likely to gain support. The FDP Project will monitor and analyze developments in FDP internationally. For more information, please visit: http://forensicdnaethics.org/home.

The Ethics of Gene Patenting
Jon Merz, MBA, JD, PhD, and Mildred Cho, PhD
Center faculty have been studying and writing about the effects of gene patenting for many years. Drs. Jon Merz and Mildred Cho of Stanford, working with Dr. Debra Leonard of Penn and others, have developed a body of empirical work looking primarily at the effects of patents claiming genetic diagnostic tests on the practice of medicine. For the last 3 years, they have had NIH/NHGRI/ELSI funding (HG02034 to Cho et al.) for a large interview-based case study examining the effects on clinical medicine and research of patented genes. A number of smaller studies have also been performed, including work examining licensing practices, and several studies that are currently in preparation looking more in depth at patenting, licensing, and interferences in biotechnology.

The Ethics of Nanotechnology and Nanomedicine
Arthur Caplan, PhD, Marisa Marcin, JD and Jan Jaeger, RN, PhD
This project involves the study of the ethical issues and social implications of nanotechnology and nanomedicine. A number of projects have been conducted in conjunction with the UPenn Nano/Bio Interface Center supported by the NSF including risk perception research and the ethical issues of testing nanomedicines in clinical trials.

GABEX: Global Alliance of Biomedical Ethics Centers Project
Art Caplan, PhD and Autumn Fiester, PhD
The University of Tokyo Center for Biomedical Ethics and Law (UT-CBEL) - a new interdisciplinary and international education research center, was created to address bioethical issues relevant to Japan and the international community. This center will form an international network by establishing partnerships with research centers overseas (GABEX: Global Alliance of Biomedical Ethics Centers Project). Through these efforts, we will foster the next generation of bioethics experts in policy-making, research, and clinical medicine who are capable of providing international leadership in the future. Currently, Center Director Art Caplan, and Senior Fellow Autumn Fiester are involved in this collaboration. For more information, please visit http://www.u-tokyo.ac.jp/coe/English/list/base15.html.

High School Bioethics Project
Art Caplan, PhD and Dominic Sisti, PhD
Since 2001, the University of Pennsylvania Center for Bioethics High School Bioethics Project has endeavored to improve secondary education through bioethics. We believe bioethics can not only introduce students to ethical choices they will face in their lives but also stimulate understanding of scientific advances and methods, thereby contributing to lifelong interest in biomedical science. We have sponsored several instructional workshops, intensive summer courses, teacher fellowships, and student internships. Project staff have also partnered with high school teachers who wish to develop bioethics curricula for use in science classes or syllabi for stand-alone bioethics courses. For more information, please visit the High School Bioethics Project website: http://www.highschoolbioethics.org/

Identifying Ethical Issues in Stem Cell Transplantation
Arthur Caplan, PhD and Jan Jaeger, RN, PhD
This project seeks to learn first hand - from bench scientists and clinicians - what they believe are the most important ethical issues raised by stem cell research that should be addressed in order to protect human research subjects. By capturing these concerns in the early stages of stem cell research the appropriate ethical guidance to manage unique challenges in clinical trials can be developed.

Immune Tolerance Network
Art Caplan, PhD, Jan Jaeger, RN, PhD and Marisa Marcin, JD
The Immune Tolerance Network is a National Institutes of Health supported international research consortium that conducts clinical trials concerned with conditions affecting the human immune system such as organ transplantation, type 1 diabetes, multiple sclerosis and rheumatoid arthritis. Faculty and staff at the Center for Bioethics are members of the Network Steering Committee and comprise the Policy and Ethics Committee. The Center ensures the ethical conduct of clinical trials, manages conflicts of interest and monitors confidentiality compliance.

Managing Patient/Caregiver Conflict Through Mediation
Edward Bergman, JD and Autumn Fiester, PhD
The Penn Center Mediation Program offers training in clinical ethics mediation skills and techniques for physicians, nurses, administrators, ethics committee members, social workers, legal counsel, pastoral care provides and other health care professionals. This program enhances the skill set of any health care professional who deals with conflict in a clinical setting. Our workshops cover an introduction to the mediation process, dynamics of the patient/provider relationship, categories of clinical ethics disputes, the neutrality dilemma, and mock mediations. Students will be placed in a variety of clinical simulations in which they will play the roles of disputants and mediators, with ongoing discussions and critiques of mediator performance. For more information, contact: Robin Hartley, hartleyr@mail.med.upenn.edu or visit: www.bioethics.upenn.edu/mediation

Neuroscience and National Security
Jonathan Moreno, PhD
This area continues to attract growing academic and governmental attention. I'm working on several related projects, including the use of technologies like transcranial magnetic stimulation for brain modification and repair.

Respondent Burden and Retention in Cancer Clinical Trials
Connie Ulrich, PhD, RN, FAAN
The purpose of this mixed methods study is to explore what burden adult cancer subjects perceive in relation to benefits, the impact of these benefit-burden perceptions and other factors on retention decisions, and to develop items for future use in constructing a preliminary instrument of decisional balance (benefit-burden) to understand subjects' decisions related to cancer CT retention.

The Scattergood Program for the Applied Ethics of Behavioral Healthcare
Art Caplan, PhD, Dominic Sisti, MBE, PhD, Hila Rimon-Greenspan, MA
The Scattergood Program for the Applied Ethics of Behavioral Healthcare is a program based at the Center for Bioethics at the University of Pennsylvania, dedicated to discussion, research, and resource production for the field of psychiatric, mental, and behavioral health ethics. The ScattergoodEthics Program is one of the few programs in the United States dedicated to an examination of ethics in psychiatric, mental, and behavioral healthcare. The program engages in scholarly research; trains and educates clinicians and scholars in psychiatric, mental, and behavioral health ethics; sponsors programs and public events; and generally promotes and advocates for greater attention to the ethical dimensions of diagnosis and treatment. The ScattergoodEthics Program hopes to dramatically enrich the quality of dialogue and thinking in the mental health field both regionally and nationally. To contact ScattergoodEthics, email spaebh@mail.med.upenn.edu or visit our website at http://www.scattergoodethics.org.

Categories & Controversies: The Ethical Dimensions of the DSM-5
Dominic Sisti PhD & Arthur Caplan PhD
Beginning in 2011, the Scattergood Program for the Applied Ethics of Behavioral Healthcare at the Center for Bioethics will convene a working group to examine ethical issues emerging from the publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in May 2013. The working group will also be hosting a symposium on ethical issues of the DSM-V in the fall of 2011. This project is supported by a grant from the Leonard Davis Institute of Health Economics and the Thomas Scattergood Foundation. Please see our website for more information.

Residency in Psychiatry: Ethics Track
In conjuction with the Department of Psychiatry at the Perelman School of Medicine of the University of Pennsylvania, the ScattergoodEthics Program will offer directed research and didactics for psychiatry residents and fellows interested in developing their skills in the applied ethics of behavioral healthcare. Trainees will work with faculty mentors to design a focused reading list and execute a research project during their third and/or fourth year of residency at Penn. Applicants to the residency program should communicate their interest in the ethics track-- including relevant experience, background and goals-- to Dr. Anthony Rostain. For more information: Click here.

Standards of Scientific Conduct
Connie Ulrich, PhD, RN, FAAN
The two specific aims of this project are: (1) Construct framework for national survey of RCR standards (focus group discussions with mixed discipline and discipline-specific groups of researchers) and (2) Conduct national survey of RCR standards (interviews of research scientists and Web-based survey of faculty in doctoral programs for each of the four disciplines). The results of this investigation will provide an evidence-based rationale for what RCR course instructors should teach about the standards of responsible conduct.

Stem Cell Research Ethics
Jonathan Moreno, PhD
I continue to be interested in issues concerning research involving human embryonic stem cells. My special interest currently is the implications of induced pluripotent stem cell technology for ethical practices.

A Study of Occupational Health and Safety and Emerging Nanotechnologies
Jan Jaeger, RN, PhD
Research suggests that there may be potential health risks associated with exposure to engineered nanoscale materials. Regulations are not in place and the number of people exposed is rapidly growing as companies, universities, government laboratories and other organizations manufacture, use and dispose of these materials. The purpose of this project is to support the NIOSH endeavor to identify types of engineered nanoscale materials that are being manufactured or handled and where in the various workplace settings exposures might occur.

Toward a Framework for Policy Analysis of Microbiome Research
Pamela Sankar, PhD
The primary objective of this research is to develop a method to monitor the emergence of social and ethical issues associated with the Human Microbiome Project.

Transplant Ethics
Art Caplan, PhD and Jan Jaeger, RN, PhD
This recently initiated program is committed to research and scholarship pertaining to organ transplantation ethics. New activities are getting underway with initial work focusing on an ethical framework for stem cell based therapies entering clinical trials, identifying barriers to minority organ donation in the Philadelphia area and understanding how transplant patients make decisions about participating in clinical trials.

Vaccine Ethics
Art Caplan, PhD, David Curry, and Jason Schwartz, MBE, AM
Faculty and staff at the Penn Center for Bioethics conduct research on a number of topics related to vaccines and vaccination programs. Recent and ongoing projects have examined the evaluation of risk and benefit in vaccine policy, vaccination school-entry requirements, debates over vaccine safety, and the role of vaccines in planning for pandemics and bioterrorism. The Center for Bioethics also operates VaccineEthics.org: http://www.vaccineethics.org, a website providing news, perspectives, and resources on all aspects of vaccine policy and practice, with special attention to related ethical considerations. The Center for Bioethics is also a partner in the Center for Vaccine Ethics and Policy, a collaboration with the Wistar Institute Vaccine Center and the Vaccine Education Center at the Children's Hospital of Philadelphia.

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