Featured Research

from universities, journals, and other organizations

Genetic Research Using Human Samples Requires New Types Of Informed Consent

Date:
September 18, 2008
Source:
Public Library of Science
Summary:
Genetic studies involving the long term storage and study of human samples hold great promise for medical research -- but they also pose new threats to individuals such as uninsurability, unemployability, and discrimination, say a team of researchers in this week's PLoS Medicine.

Genetic studies involving the long term storage and study of human samples hold great promise for medical research—but they also pose new threats to individuals such as uninsurability, unemployability, and discrimination, say a team of researchers in this week's PLoS Medicine.

Related Articles


Matthias Wjst (Institute of Genetic Medicine, Bozen, Italy) and colleagues argue that the traditional informed consent process—in which the researcher counsels potential study participants about the risks and benefits of taking part in a study—may no longer be appropriate when dealing with long-term studies using biological materials.

"In current practice," say the authors, "the only moment when a person is really able to make a choice about participating in clinical research is when they sign the informed consent form."

But they argue that there is a major problem with asking participants to sign this form as a "once-and-for-all decision"—a biological sample collected from a study participant for one study today might feasibly be of use in a future study several years down the line. New genetic information that is obtained from these later studies, if released, could lead to "uninsurability, unemployability, discrimination, and the breakdown of family relationships by unintentionally demonstrating missing or unknown relatedness."

"Informed consent should be seen as an ongoing process between researcher and participant, and not just as a once-and- for-all decision," say Wjst and colleagues.

They argue that any research following the initial storage of samples needs to be explained to the participants so that they can give their feedback. The authors suggest that such communications could involve both conventional channels—face-to face meetings, group meetings, and letters—as well as newer electronic communications—such as e-mail alerts, online chat rooms, and blogs.


Story Source:

The above story is based on materials provided by Public Library of Science. Note: Materials may be edited for content and length.


Journal Reference:

  1. Mascalzoni D, Hicks A, Pramstaller P, Wjst M. Informed consent in the genomics era. PLoS Med, 2008; 5(9): e192 DOI: 10.1371/journal.pmed.0050192

Cite This Page:

Public Library of Science. "Genetic Research Using Human Samples Requires New Types Of Informed Consent." ScienceDaily. ScienceDaily, 18 September 2008. <www.sciencedaily.com/releases/2008/09/080916101150.htm>.
Public Library of Science. (2008, September 18). Genetic Research Using Human Samples Requires New Types Of Informed Consent. ScienceDaily. Retrieved April 21, 2015 from www.sciencedaily.com/releases/2008/09/080916101150.htm
Public Library of Science. "Genetic Research Using Human Samples Requires New Types Of Informed Consent." ScienceDaily. www.sciencedaily.com/releases/2008/09/080916101150.htm (accessed April 21, 2015).

Share This


More From ScienceDaily



More Health & Medicine News

Tuesday, April 21, 2015

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Blue Bell Recalls All Products

Blue Bell Recalls All Products

AP (Apr. 21, 2015) Blue Bell Creameries voluntary recalled for all of its products after two samples of chocolate chip cookie dough ice cream tested positive for listeria, a potentially deadly bacteria. Blue Bell&apos;s President and CEO issued a video statement. (April 21) Video provided by AP
Powered by NewsLook.com
Yemen Doctors at Breaking Point

Yemen Doctors at Breaking Point

Reuters - News Video Online (Apr. 21, 2015) A Sanaa hospital struggles to cope with the high number of casualties with severe injuries, after an air strike left at least 25 dead and hundreds wounded. Deborah Lutterbeck reports. Video provided by Reuters
Powered by NewsLook.com
'Tutu Tuesdays' Brighten Faces at Kids' Hospital

'Tutu Tuesdays' Brighten Faces at Kids' Hospital

AP (Apr. 21, 2015) Doctors and nurses have started wearing ballet tutus every Tuesday to cheer up young hospital patients at a Florida hospital. It started with a request made by a nervous patient -- now, almost the entire staff is wearing the tutus. (April 21) Video provided by AP
Powered by NewsLook.com
Humanoid Robot Can Recognise and Interact With People

Humanoid Robot Can Recognise and Interact With People

Reuters - Innovations Video Online (Apr. 20, 2015) An ultra-realistic humanoid robot called &apos;Han&apos; recognises and interprets people&apos;s facial expressions and can even hold simple conversations. Developers Hanson Robotics hope androids like Han could have uses in hospitality and health care industries where face-to-face communication is vital. Matthew Stock reports. Video provided by Reuters
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:

Strange & Offbeat Stories


Health & Medicine

Mind & Brain

Living & Well

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins