Safeguards needed for tissue donors

Safeguards needed for tissue donors
Tom Tomlinson, Michigan State University, argues that donors to biobanks have a right to information about how their sample may be used. Credit: Photo by G.L. Kohuth.

vast collections of human tissue samples that scientists hope will lead to new treatments for diseases – have a right to basic information about how their donations may be used, a Michigan State University ethicist argues in a new paper.

The idea behind biobanks is that a repository with hundreds of thousands of samples, each linked to and other , can yield discoveries smaller data sets can't match. Once samples are collected, researchers in many fields can use the data repeatedly.

"More and larger biobanks are in many ways the future of ," said Tom Tomlinson, director of MSU's Center for Ethics and Humanities in the Life Sciences. "Their rise as a means that sooner or later – probably sooner – all of us will be participating in research that we know nothing whatsoever about."

have typically viewed biobank donations through the lens of risk: Once someone has given a tissue sample and all identifying information is removed, later research risks no harm to them. Since they no longer need protection, donors usually sign blanket consent forms and receive no updates about how the tissue is used.

But people make donations in the hope of doing good, giving them an ongoing moral stake in what happens to their tissue samples, Tomlinson writes in the Hastings Center Report, a leading bioethics journal.

"Donors should have the information they need to decide if there are moral risks involved that might not be worth taking," he said.

For instance, surveys have found that some people may not donate to publicly funded biobanks if the research would lead to private commercial gain. Others may not want to be involved in research on controversial issues like , or studies that reinforce negative .

"It's hard to tell a person exactly how their donation will be used," Tomlinson said, "but what you can tell them is the range of uses to which it might be put."

Tomlinson offers specific steps biobanks should take to protect donors' rights. Among them:

  • Donors should get ongoing summaries of research projects, written in plain language.
  • Biobanks should inform donors when their tissue might be used in potentially controversial research.
  • Data-management systems should be in place to let donors withdraw their samples at any time if they take issue with the kinds of research the biobank supports.

add to favorites email to friend print save as pdf

Related Stories

Europe tackles ethics of biobanks

Jun 20, 2012

Collections of human biological samples used in medical research should be governed by clear rules that safeguard ethics while advancing knowledge, scientists said Wednesday at a Council of Europe symposium.

Public prefers limited informed consent process for biobanks

Jun 29, 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 ...

Keeping DNA 'all in the family'

Oct 06, 2009

Scientists look for clues about therapies and cures for life-threatening childhood illnesses in children's DNA -- it seems only logical to do so. But the decision as to who should have access to DNA samples from children ...

Recommended for you

Cold cash just keeps washing in from ALS challenge

Aug 28, 2014

In the couple of hours it took an official from the ALS Association to return a reporter's call for comment, the group's ubiquitous "ice bucket challenge" had brought in a few million more dollars.

Medtronic spends $350M on another European deal

Aug 27, 2014

U.S. medical device maker Medtronic is building stronger ties to Europe, a couple months after announcing a $42.9 billion acquisition that involves moving its main executive offices across the Atlantic, where it can get a ...

Mind over matter for people with disabilities

Aug 26, 2014

People with serious physical disabilities are unable to do the everyday things that most of us take for granted despite having the will – and the brainpower – to do so. This is changing thanks to European ...

Ukraine's former world's tallest man dies

Aug 25, 2014

Ukraine's tallest man, who briefly held the world record but gave it up to live as a recluse, has died due to complications from the condition that saw him never stop growing, local media reported Monday.

User comments