Navigation Links
Study of human specimen collections in the US offers first look at their huge diversity
Date:1/28/2013

Chapel Hill, N.C. Biobanks are organizations that collect, store and share human specimens (e.g., blood, solid tissues, hair) for research purposes. The rise of the human genome project and of large-scale genetics studies have spurred a dramatic increase in the number of biobanks in the last decade, increasing their importance in biomedical research.

But until now, biobanks in the U.S. have never been studied systematically, leaving few clear details as to how they are run or the policies and practices they use in managing their work.

A new study from the University of North Carolina published January 25, 2013 in the journal Genome Medicine reveals the huge diversity of U.S. biobanks and also raises questions about the best way to manage and govern them.

"Biobanks are increasingly important to scientific advances, but our decentralized, fragmented research enterprise system in the U.S. has encouraged their development without necessarily providing them with the tools to survive," says study leader Gail Henderson, PhD, professor and chair of social medicine at the University of North Carolina. She also heads UNC's Center for Genomics and Society.

Henderson and colleagues from UNC decided to address this paucity of information by inviting more than 600 biobanks in the U.S. to participate in an online survey. These included private and public, commercial and noncommercial, and many biobanks affiliated with hospitals and academia. Representatives of 456 U.S. biobanks (72 percent of the list invited) participated in the survey.

Among the main findings is their great diversity. "They get established for a variety of reasons; some accidental, some intentional. They vary in size, in when they were established, how formal they are as organizations, what kinds of specimens they hold, who pays for them, and where those specimens come from," Henderson notes.

In the survey, just over half (53 percent) listed research on a particular disease, such as cancer, as the most important reason for establishment. Twenty-nine percent listed research generally. Other reasons included response to a gift or grant, and "intent to centralize, integrate, or harmonize" older specimen collections.

The size of U.S. biobank collections varies, in number of specimens (from tens to millions) and in the types and where they come from individuals, clinics, hospitals, public health programs, and research studies.

Henderson also points out that only a small minority are commercial businesses. "So, not surprisingly, most biobanks do not perceive being in a competitive market. But the majority are quite worried about funding, and many are concerned that the specimens they collect aren't being adequately utilized."

"Researchers and people whose specimens are being held need to be concerned that we don't have a system that is as efficient and effective as it could be," Henderson adds. "If you collect specimens but don't use them, this is a failure to deliver on the promise of advancing translational research, and thus an ethical as well as technical concern."

Biobanks, like the researchers who depend on their services and specimens, need guidance informed by knowledge of their practices and challenges, the authors state. Required are policies "as nuanced as the biobanks themselves," whether these policies address issues of privacy or identity protection, or advancement of research goals.

"Given the diversity in biobank organizational characteristics identified in our survey, it's likely that management and governance policies will have to be tailored to fit the particular context. One-size policies will not fit all," says Henderson.


'/>"/>
Contact: Les Lang
llang@med.unc.edu
919-966-9366
University of North Carolina Health Care
Source:Eurekalert  

Related biology news :

1. Study by UC Santa Barbara researchers suggests that bacteria communicate by touch
2. Law that regulates shark fishery is too liberal: UBC study
3. New study will help protect vulnerable birds from impacts of climate change
4. Study jointly led by UCSB researcher supports theory of extraterrestrial impact
5. BYU study: Using a gun in bear encounters doesnt make you safer
6. 15-year study: When it comes to creating wetlands, Mother Nature is in charge
7. Pycnogenol (French maritime pine bark extract) shown to improve menopause symptoms in new study
8. Crystal structure of archael chromatin clarified in new study
9. EU-funded study underlines importance of Congo Basin for global climate and biodiversity
10. University of Houston study shows BP oil spill hurt marshes, but recovery possible
11. Study demonstrates cells can acquire new functions through transcriptional regulatory network
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
Study of human specimen collections in the US offers first look at their huge diversity
(Date:5/20/2016)... 20, 2016  VoiceIt is excited to announce ... By working together, VoiceIt and VoicePass ... and VoicePass take slightly different approaches to voice ... security and usability. ... new partnership. "This marketing and technology ...
(Date:5/12/2016)... 12, 2016 WearablesResearch.com , a brand ... overview results from the Q1 wave of its quarterly ... was consumers, receptivity to a program where they would ... health insurance company. "We were surprised to ... Michael LaColla , CEO of Troubadour Research, "primarily ...
(Date:5/3/2016)...  Neurotechnology, a provider of high-precision biometric identification ... Identification System (ABIS) , a complete system for ... can process multiple complex biometric transactions with high ... face or iris biometrics. It leverages the core ... MegaMatcher Accelerator , which have been used in ...
Breaking Biology News(10 mins):
(Date:5/26/2016)... , ... May 26, 2016 , ... ... company, today announced several positive developments that position the Company for the future. ... of the transaction, Craig F. Kinghorn has been appointed Chairman of the Board, ...
(Date:5/25/2016)... ... May 25, 2016 , ... The Ankle Plating System 3 ... to address fractures of the distal tibia and fibula. This system marks Acumed's ... System 3 is composed of seven plate families that span the lateral, medial, ...
(Date:5/25/2016)... ... , ... WEDI, the nation’s leading authority on the use of health IT ... been named by the WEDI Board of Directors as WEDI’s president and CEO. Stellar ... more than 35 years of experience in healthcare, association management and organizational leadership, Stellar ...
(Date:5/24/2016)... 24, 2016   MedyMatch Technology Ltd ., the data ... real-time decision support tools in the emergency room, announced today ... Israeli Advanced Technology Industries (IATI) BioMed Conference. ... 15th National Life Sciences and Technology Week, and is ... Hotel in Tel Aviv, Israel . ...
Breaking Biology Technology: