Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Public prefers limited informed consent process for biobanks

29.06.2011
Biobanks are repositories for tissue samples, usually in the form of blood or saliva or leftover tissue from surgical procedures. These samples are collected and used for future research, including genetic research.

They may be linked to personal health information regarding the sample donor. People who are eligible to donate these samples and researchers who want to use them face important questions with respect to whether and how informed consent should be obtained for sample and health information collection and use.

A team of University of Iowa researchers led by Christian Simon, Ph.D., associate professor of bioethics and humanities in the Department of Internal Medicine at the UI Roy J. and Lucille A. Carver College of Medicine, conducted a study to determine people's preferences with respect to informed consent for biobanking. The study, "Active choice but not too active: Public perspectives on biobank consent models," was published ahead of print in last month's online edition of the journal, Genetics in Medicine. The study involved 751 telephone surveys and seven focus groups with English-speaking members of the public who were randomly sampled from counties across Iowa. Over half the study participants were female.

Most study participants had not heard of a "biobank" before, but when it was explained to them what biobanks were and that they could help advance research on genetic and nongenetic aspects of disease, most study participants were enthusiastic.

The majority (95 percent) of survey participants rejected the idea of deriving and banking samples without first informing and asking patients for their permission—obtaining their informed consent.

"This speaks to the premium many people place on being informed and having a choice about participating in research," Simon said.

Participants were also asked whether they would prefer to opt in or out of biobank participation.

"This distinction is important because opt-in consent typically involves more detail, more time and a more active decision on research participation when compared to an opt-out process," Simon explained.

Sixty-seven percent of those surveyed and 63 percent of those who participated in the focus groups said they would prefer an opt-in consent process.

"Nonetheless," Simon said, "a substantial minority -- 18 percent in the surveys and 25 percent in the focus groups -- said they would prefer an opt-out process, primarily because they felt it provided at least some level of choice, involved less time for potential donors and fewer resources for the biobank, and would help with sample accrual and therefore also medical research and progress."

Study participants were then asked to consider whether they would prefer a broad description of how their samples and health information might be used in future research, whether they wanted to control what research their samples and health information are used in via "menu-type" consent forms, or whether they wanted to be contacted for their permission every time their samples and health information became eligible for research.

"Broad consent was preferred by more people when compared to either the menu or study-specific types of consent," Simon said. "However, if you were to lump together the people who said they preferred the menu and study-specific types of consent on the grounds that both these approaches promote more control over sample use than broad consent, the margin is not so impressive."

Forty-one percent of people surveyed – and 54 percent of those in focus groups – were in favor of the broad approach to providing consent.

Simon noted that some experts have suggested that more than one consent approach should be offered to people to allow for a diversity of consent preferences.

"Of course, there may be significant cost and logistic implications to creating such multiple options," Simon said.

He said the study findings will provide a starting point for discussions about consenting patients to a new comprehensive tissue biobank at UI Hospitals and Clinics, which will house thousands of tissue samples for future research purposes. The tissue will be accessed for DNA as well as RNA, Simon said.

"Biobanks are going to be – already are – dependent on public support and participation," Simon said. "Putting into place an informed consent process that meets formal requirements and standards and that works for people by taking their values and preferences into account is one way that we can reach out and build public support and trust for biobanks."

The study was supported by the UI Institute for Clinical and Translational Sciences, the UI Carver College of Medicine and the UI Vice President for Medical Affairs. The study was conducted with the assistance of the Center for Social and Behavioral Research at the University of Northern Iowa.

Molly Rossiter | EurekAlert!
Further information:
http://www.uiowa.edu

Further reports about: Biobanks Medicine surgical procedures tissue samples

More articles from Life Sciences:

nachricht Transport of molecular motors into cilia
28.03.2017 | Aarhus University

nachricht Asian dust providing key nutrients for California's giant sequoias
28.03.2017 | University of California - Riverside

All articles from Life Sciences >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: A Challenging European Research Project to Develop New Tiny Microscopes

The Institute of Semiconductor Technology and the Institute of Physical and Theoretical Chemistry, both members of the Laboratory for Emerging Nanometrology (LENA), at Technische Universität Braunschweig are partners in a new European research project entitled ChipScope, which aims to develop a completely new and extremely small optical microscope capable of observing the interior of living cells in real time. A consortium of 7 partners from 5 countries will tackle this issue with very ambitious objectives during a four-year research program.

To demonstrate the usefulness of this new scientific tool, at the end of the project the developed chip-sized microscope will be used to observe in real-time...

Im Focus: Giant Magnetic Fields in the Universe

Astronomers from Bonn and Tautenburg in Thuringia (Germany) used the 100-m radio telescope at Effelsberg to observe several galaxy clusters. At the edges of these large accumulations of dark matter, stellar systems (galaxies), hot gas, and charged particles, they found magnetic fields that are exceptionally ordered over distances of many million light years. This makes them the most extended magnetic fields in the universe known so far.

The results will be published on March 22 in the journal „Astronomy & Astrophysics“.

Galaxy clusters are the largest gravitationally bound structures in the universe. With a typical extent of about 10 million light years, i.e. 100 times the...

Im Focus: Tracing down linear ubiquitination

Researchers at the Goethe University Frankfurt, together with partners from the University of Tübingen in Germany and Queen Mary University as well as Francis Crick Institute from London (UK) have developed a novel technology to decipher the secret ubiquitin code.

Ubiquitin is a small protein that can be linked to other cellular proteins, thereby controlling and modulating their functions. The attachment occurs in many...

Im Focus: Perovskite edges can be tuned for optoelectronic performance

Layered 2D material improves efficiency for solar cells and LEDs

In the eternal search for next generation high-efficiency solar cells and LEDs, scientists at Los Alamos National Laboratory and their partners are creating...

Im Focus: Polymer-coated silicon nanosheets as alternative to graphene: A perfect team for nanoelectronics

Silicon nanosheets are thin, two-dimensional layers with exceptional optoelectronic properties very similar to those of graphene. Albeit, the nanosheets are less stable. Now researchers at the Technical University of Munich (TUM) have, for the first time ever, produced a composite material combining silicon nanosheets and a polymer that is both UV-resistant and easy to process. This brings the scientists a significant step closer to industrial applications like flexible displays and photosensors.

Silicon nanosheets are thin, two-dimensional layers with exceptional optoelectronic properties very similar to those of graphene. Albeit, the nanosheets are...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

International Land Use Symposium ILUS 2017: Call for Abstracts and Registration open

20.03.2017 | Event News

CONNECT 2017: International congress on connective tissue

14.03.2017 | Event News

ICTM Conference: Turbine Construction between Big Data and Additive Manufacturing

07.03.2017 | Event News

 
Latest News

Researchers shoot for success with simulations of laser pulse-material interactions

29.03.2017 | Materials Sciences

Igniting a solar flare in the corona with lower-atmosphere kindling

29.03.2017 | Physics and Astronomy

As sea level rises, much of Honolulu and Waikiki vulnerable to groundwater inundation

29.03.2017 | Earth Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>