Blogposium Topic: Biobanking

[Here is the first of two topics that HealthNex is contributing to the Blogposium, a three-day collaboration of healthcare bloggers to expand the Clinical Informatics Wiki. As readers, you can advance this innovation effort by adding comments, edit suggestions, or additional material to each of these topic drafts.  Please also visit the other participating Blogposium blogs--links at bottom of this post-- to view and review other topics]

Biobanking (a.k.a. biorepositories or tissue banks)

Biobanks are a new frontier for biomolecular research, clinical genomics and personal medicine that seeks to integrate collections of bio-specimens (blood, DNA, tissue, biopsy specimens, etc) with corresponding patient data such as genetic profiles, medical histories, and lifestyle information.

By combining and comparing biological tissue samples with genetic and historical patient information, researchers will be able to investigate the fundamental mechanisms of diseases in rich new ways. New insights into molecular and genetic processes will lead to better techniques for predicting who may be susceptible to particular illnesses, as well as to more targeted and innovative ways to treat many diseases.

As medicine and information technologies continue to converge, biobanking offers new abilities to study the complex interaction between genes, the environment and social factors. One element of the movement toward “information-based medicine” and computational biology, biobanking promises to be an essential tool for translating new biomedical knowledge into new clinical practices, diagnostic techniques and preventative treatments.

While biobanking is still in its infancy, some critics question whether behavioral and lifestyle data can be tracked and measured against genetic data in ways that will lead to major breakthroughs. Others challenge the assumption that genetics plays a decisive role in most disease processes.

Leading Examples of Biobanking

• Launched in March, 2006, the UK Biobank aims to collect DNA samples and histories from 500,000 patients, ages 40-69, and track their health over time. Participants’ names and addresses will be kept confidential, but data will be made available to applicants whose research will first be reviewed by a committee. A BBC report called the UK Biobank "the largest ever study into the genetic and environmental causes of disease."

• Karolinska Institutet, the Nobel-prize-awarding research center in Stockholm, Sweden announced the KI Biobank in November, 2004. Part of its mission is to help establish biobank informatics, which “involves defining, structuring and standardizing the vast information associated to collected samples.” At the core of the project is a Biobank Information Management System (BIMS), designed to enhance the scientific utility of the biobank. Through this system, genotype and phenotype data will be linked in a standardized fashion, and be accessed by research groups. KI Biobank is also part of The Swedish National Biobank Program.

• The National Cancer Institute’s Office of Biorepositories and Biospecimen Research (OBBR) was established in 2005 “in recognition of the critical role that biospecimens play in cancer research.” The OBBR is working to develop a common biorepository infrastructure that promotes resource sharing and team science, in order to facilitate multi-institutional, high throughput genomic and proteomic studies. OBBR’s objectives include: establishing biobanking as a new area of research, developing guidelines to harmonize policies and procedures of NCI-supported biorepositories, coordinating with the international biobanking community, and facilitating the establishment of a National Biospecimen Network (NBN).The Prostate SPORE program is the first pilot for the NBN.

• Seven genetic advocacy organizations established the Genetic Alliance BioBank in October, 2003 as a repository for the standardized collection, storage and distribution of biological samples and clinical data for research purposes. This novel, advocacy-owned and -managed repository focuses and accelerates research, providing infrastructure for many advocacy groups to build a valuable resource.

• The ProCURE Québec Prostate Cancer Biobank “aims to collect, process, and store the highest quality biological materials (prostate tissue, blood and urine) and related information from men with prostate cancer and those at risk over time, to make available for the widest possible range of clinically meaningful prostate cancer research. The goal of the Biobank is to increase the quality of patient care and accelerate the impact of research on such care. It will implement the highest standards of biological banking to provide outstanding clinical, medical, demographic and analytic data through the use of upfront broad consent forms.”

• FasterCures.org announced in November, 2005 it will build and maintain BioBank Central, a Web-based portal that will connect all the constituencies in the global biobank world: researchers; academic medical centers; biobank managers; tool and product providers; patients; ethicists; government agencies; and the public. The portals objectives: to encourage the donation of specimen; educate the public about the advancements that could come from the study of biological materials; accelerate the discovery and development of new diagnostics and therapeutics; enable the biorepository community to collaborate on implementing best practices and promising approaches. Sponsors include IBM, Invitrogen, Affymetrix, and Bioaccelerate.

• The Genographic Project is a five-year effort to understand the human journey—where we came from and how we got to where we live today. Launched in April, 2005 as a collaboration between National Geographic and IBM, the project seeks to trace mankind’s migration through DNA analysis. More than 137,000 public participants around the globe have contributed their DNA via packaged kits. Field scientists also aim to collect more than 100,000 DNA samples from 10 remote and isolated indigenous populations on six continents. While not precisely a biobanking project, the work may inform other efforts. The genetic propensity for certain diseases in different “haplogroups,” population segments of the human ancestry, may lead to new ways to prevent and treat disease.

• Founded in 2000, the International Society for Biological and Environmental Repositories, ISBER, strives to provide "information and guidance on the safe and effective management of specimen collections. One of the group’s recent efforts was to develop Best Practices for Human Tissue Repositories, which was published in its official publication Cell Preservation Technology. ISBER is a division of the American Society for Investigative Pathology.

Biobanking Related Companies

• Ardais
• BioStorage Technologies
• Cytomyx
• Integrated Laboratory Services - Biotech (ILSbio)
• LabVantage Solutions
• SeraCare Life Sciences (Genomics Collaborative unit)

Key Challenges to Biobanking

• Anonymizing, or de-identifying, samples to protect patient privacy
• Standardizing sample preparation, storage protocols
• Enabling interoperability and data exchange between biobanks
• Resolving issues such as who owns and controls specimens and refining informed consent practices as biobanking expands

Visit All the Blogposium Participants:

• Christina's Considerations on Regional Health Information Organizations
• eHealth on Integration of Personal Health Records and Electronic Medical Records
• EMR and HIPAA on Electronic Medical Records and Biometric Integration
• Envisioning 2.0 on The E-Patient-Provider Relationship
• HealthNex (two other topics: Patient Experiential Data and Genetic Privacy Issues)
• HITsmit on e-MAR Systems
• HIT Transition on RHIO Startup Funding and Finance
• Informaticopia on International Perspectives on Clinical Informatics
• Marketplace.MD on the Consumer-Driven Health Care Movement
• medmusings  on Mobile Access to EMR/EHR/PHR for Providers and Patients
• Usemed  on Ongoing and Completed EHR, CPOE and CDS Implementation Projects

(It's not too late to register! )

Blogposium IBM HealthNex

Comments

[emr and HIPAA]

I don't know much about biobanking so I can't help too much. I would be interested in a section describing the types of technology used to store all of this data. How much data is it? What kind of processors/equipment is used to analyze the data? How does it capture the data?

[Royal College of Physicians of Ireland]

As part of the Royal College of Physicians of Ireland’s (RCPI) annual programme of public meetings on health issues – “Promoting a Healthy Nation” – we are pleased to invite you and your colleagues to the Faculty of Pathology’s meeting on cancer biobanking to take place on December 3, 2007 at 6:00 p.m. at the RCPI, 6 Kildare Street, Dublin 2.

The fight against cancer depends on cancer research. Surplus tissue samples from cancer operations can be frozen and stored for research in individual hospital biobanks, which have greatly added value if linked with coded patient data in a shared database.

Patient consent and privacy, fair access, sharing, trust and appropriate resources would stimulate large collaborative Irish and international research studies and eventually better treatment, earlier diagnosis and cancer prevention. The aims of the meeting are to engage with the public in discussing this initiative and help inform the Minister’s expert group for the development of an all-Ireland cancer biobank.

The public meeting, which will be chaired by Claire Byrne, broadcaster and journalist, will include presentations by Prof. John O’Leary, Professor of Pathology at Trinity College Dublin, Prof. Gerry Thomas, Professor of Molecular Pathology at Hammersmith Hospital, London and Prof. Eoin Gaffney, Consultant Histopathologist at St. James’s Hospital.

The meeting is open to all members of the public, and we hope you can attend. Please RSVP to Ms. Annemarie Murphy at pathology@rcpi.ie or at: 01-8639700.