Biobank Public Deliberation

Welcome!

Did you know that each week, around 100 of your fellow Hoosiers give a vial of blood to help medical researchers?

This blood is kept by the Indiana Biobank, a project that is designed to help provide researchers across the state with biological samples that they can use to develop new medicines, better understand diseases, and improve patient care. To date, more than 50,000 people have provided blood samples, and the goal is to collect many more over the coming years.

Biobanks need the public's input on some imporatant issues. these issues range from figuring out how much information biobanks should be gathering about donors to what types of research these biobanks should help support.

Welcome to the Biobanking in Indiana Public Deliberation webpage, your hub for learning more about the project, biobanking in Indiana, and registering for participant selection!

We are inviting people from across the state to participate in a project called "The Biobanking in Indiana Public Deliberation." It is a a research study at the Indiana Clinical and Translational Sciences Institute (CTSI), a research collaborative between Indiana University, Purdue University, and the University of Notre Dame. 

The project will take place over two weekends during which participants will learn about the issues, share their perspectives on them, and work together to make recommendations for biobank policy and guidelines. 

We are not expecting you to have any specialized knowledge about biobanks or research. Instead, you will learn everything you need to know to contribute with the other participants. Your perspectives and life experience matter -- not your expertise!

Alternatively, you can call us at 317-278-4044 or email us at iucb@iupui.edu!

 

Where and When is This Event?

Dates: April 20-21 and May 4-5, 2024

Time: 9:00 AM - 4:30 PM

Location: Health Information and Translational Sciences Building

410 W. 10th St. Indianapolis, IN, 46202

Who Can Participate?

Participants will be selected from all of the people who contact our office to let us know they are interested. Participants also need to:

  • be at least 18 years old
  • speak and read English
  • belong to a household that received the invitation
  • be able to attend the entire event

How Will You Be Compensated?

  • Participants will receive $125 for each day attended, for a total of $500
  • Travel or mileage expenses will be reimbursed
  • Hotel accommodations covered for participants living more than an hour away
  • Meals and snacks provided each day

Biobanks in Indiana

Indiana Biobank

The Indiana Biobank is a statewide initiative, co-developed by Indiana University School of Medicine and IU Health to collect blood specimens through the Indiana Biobank for genomic sequencing. The specimens and information can be used in research to find better treatments for diseases of today and the future.

The goal of the Indiana Biobank is to aid researchers in discovery research that may lead to better ways to treat and prevent diseases. The Indiana Biobank works towards this goal by providing researchers with the tools and resources they need to advance their research.

Susan G. Komen Tissue Bank

In 1980, Nancy G. Brinker promised her dying sister, Susan, that she would do everything in her power to end breast cancer forever. In 1982, that promise became the Susan G. Komen® organization and the beginning of a global movement. What was started with $200 and a shoebox full of potential donor names has now grown into the world’s largest nonprofit source of funding for the fight against breast cancer. To date, they have invested nearly $3.6 billion in groundbreaking research, community health outreach, advocacy and programs in more than 60 countries. Their efforts helped reduce deaths from breast cancer by 43% since 1989. Their mission is to save lives by meeting the most critical needs in our communities and investing in breakthrough research to prevent and cure breast cancer.

Harper Cancer Research Institute Biorepository

To enhance the HCRI's mission of conducting innovative and integrative basic and clinical research to confront the complex challenges of cancer,  the Biosample Repository was established to enable researchers to investigate the mechanistic basis of human cancers, to identify new therapeutic targets, and to assess novel biomarkers of disease incidence and/or progression. 

In collaboration with pathologists at The South Bend Medical Foundation and physicians at St. Joseph Health Systems, Beacon Medical Group, and other practices around the region, the Biosample Repository collects tissue samples and fluids (blood, urine, saliva, ascites) procured from patients with malignant disease or control populations. These tissue samples and biofluids are distributed to HCRI investigators in a de-identified manner following application to and approval by the Tissue Use Committee. The Biosample Repository aims to serve as a centralized resource to procure, process, store, and distribute biosamples to investigators associated with HCRI.

National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD)

Biological samples, including DNA, cerebrospinal fluid, brain tissue and other biospecimens are the tools of laboratory research in Alzheimer’s disease. The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) at Indiana University School of Medicine is the national resource where these biological materials are stored and made available for new and ongoing research around the world.

Since its creation in the early 1990s, the repository has collected more than one million samples from individuals with Alzheimer’s disease and/or related dementias as well as healthy controls.

About the Indiana Clinical and Translational Sciences Insitute

The Indiana Clinical and Translational Sciences Institute (CTSI) was founded in 2008 by Anantha Shekhar, MD, PhD. Recognized as a statewide institute supported by a Clinical and Translational Science Award from the National Institutes of Health’s (NIH) and the National Center for Advancing Translational Science, it is now co-led by Sharon Moe, MD, and Sarah Wiehe, MD, MPH.

The Indiana CTSI has research partnerships with Indiana University, Purdue University, the University of Notre Dame, and Regenstrief Institute, and also has strong ties to many non-academic partners that include community, health care, governmental, and corporate stakeholders across the state. Furthermore, the Indiana CTSI engages with the public at every level of research, from basic science to patient care and community health.

Meet the Team

Peter Schwartz, MD, PhD

Dr. Schwartz is Director of the Indiana University Center for Bioethics, and Professor of Medicine and Professor of Bioethics at IU School of Medicine.  He is Professor of Philosophy at the IU School of Liberal Arts at Indiana University - Purdue University, Indianapolis (IUPUI). He directs the Bioethics and Participant Advocacy Program of the Indiana Clinical and Translational Sciences Institute (CTSI). Dr. Schwartz practices adult outpatient medicine in the Eskenazi Health System. 

Dr. Schwartz received his B.A. from Harvard College and his M.D. and Ph.D. in Philosophy from the University of Pennsylvania. He completed his residency in Internal Medicine at the Brigham and Women’s Hospital in Boston, MA. Dr. Schwartz has conducted research and written on ethical issues in many areas including informed consent, risk communication, electronic health information, opiates, and ideas of health, disease, and risk

Colin Halverson, PhD, Co-Investigator

Assistant Professor of Medicine at the Indiana University School of Medicine and Center for Bioethics

Dr. Halverson is a faculty investigator at the Indiana University Center for Bioethics and assistant professor of medicine at Indiana University School of Medicine. Dr. Halverson is a bioethicist as well as a medical and linguistic anthropologist. His methodologic expertise is in linguistics, anthropology, and qualitative methods in ethics research. He will participate in the planning of the public deliberation and bring his unique expertise to the development of the participant materials and analysis of the public deliberations’ output and transcripts. He will assist and provide guidance for the analysis of both the large group and small group transcriptions. 

Karen Schmidt, MSN, RN, CCRP, Project Coordinator

Project Manager, Indiana University Center for Bioethics, Department of Medicine, Indiana University School of Medicine

Ms. Schmidt is a project manager overseeing the research studies conducted by Center for Bioethics investigators. She manages public deliberation events, longitudinal studies, feasibility and pilot projects, and focus groups. Ms. Schmidt has over ten years’ experience coordinating research projects including a previous public deliberation. Ms. Schmidt will coordinate the planning and execution of the public deliberation and will be actively involved in the data analysis. She will be responsible for completing all regulatory procedures and reports including IRB approval.

 

 

Kayla Kleiman, MA, Program Staff

Research Assistant, Indiana University Center for BioethicsDepartment of Medicine, Indiana University School of Medicine

Kayla is a research assistant at the Indiana University Center for Bioethics. She joined the center part time in September 2021 and moved to full time in June 2022. Kayla received her bachelor’s degree in Sociology from Valparaiso University and she went on to finish her Masters in Philosophy with a concentration in Bioethics at IUPUI. Kayla’s primary academic interests include healthcare law and clinical ethics.

 

 

Nicolas Oliver, MA, Program Staff

Program Manager, Indiana University Center for Bioethics, Department of Medicine, Indiana University School of Medicine

Mr. Oliver is the Program Manager for the Indiana University Center for Bioethics and the Program Manager of the Bioethics and Subject Advocacy Program at the Indiana Clinical and Translational Sciences Institute. Mr. Oliver received his B.A. in History and his M.A. in Bioethics from Wake Forest University. Mr. Oliver’s academic interests include public health reform, clinical ethics, and the intersection of the law and bioethics.

 

 

Tom Doyle, PhD, Co-Investigator

Tom Doyle, PhD, is a Postdoctoral Fellow at the IU Center for Bioethics. Dr. Doyle received his bachelor’s degree in philosophy from Southern Illinois University-Carbondale, and his PhD in philosophy at Purdue University. Additionally, he completed a fellowship in clinical medical ethics at the Fairbanks Center for Medical Ethics at IU Health. With oversight of Drs. Schwartz, Ott, and Halverson, Dr. Doyle will prepare all the public deliberation materials including the briefing book. Dr. Doyle will also support the analysis and dissemination of the public deliberations’ outputs and transcripts. 

Michael Burgess, PhD, Consultant

Michael Burgess is Professor and Chair in Biomedical Ethics at the W. Maurice Young Centre for Applied Ethics and the Department of Medical Genetics at the University of British Columbia. Burgess’ primary research focus has combined social research methods with social and ethical theory to understand policy in health care, health research, and biotechnology. His more recent research has focused on science and technology and public engagement based on theories of deliberative democracy.

Burgess received his B.A. in philosophy and religion from Spring Arbor College in Michigan, and received his M.A. and Ph.D. in philosophy, with a specialization in medical ethics, from the University of Tennessee, Knoxville.

Kieran O'Doherty, PhD, Consultant

Kieran O’Doherty is an Assistant Professor at the W. Maurice Young Centre for Applied Ethics at University of British Columbia. O’Doherty’s research focuses in social aspects of health, as well as ethical implications of science and technology. He is interested in using public deliberation as a method to involve the public in research.

O’Doherty received his undergraduate training in physics and chemistry at the University of the Witwatersrand, South Africa. He then went on to complete his honors and Ph.D. degrees in psychology at the University of Adelaide, Australia.

Colene Bentley, PhD, Consultant

Colene is a Health Services Researcher at the British Columbia Cancer Agency. She also works at the Canadian Centre for Applied Research in Cancer Control as a health services researcher. Her primary training is in the humanities and social science research. Colene works to understand the outcomes of public engagement.