Archive for July, 2011

Andrew Pollack, a New York Times journalist for “Business and science of biotechnology”, reports on proposed changes in the ruling of research with human subjects as an effort to protect them and facilitates new research.

 

[From the New York Times Website]

“The officials said the changes were needed to deal with a vastly altered research climate, whose new features include genomics studies using patients’ DNA samples, the use of the Internet and a growing reliance on studies that take place at many sites at once.

‘These are the first substantial changes that have been made to the rules governing human subjects in decades, so this is really quite a historic moment,’ Kathy Hudson, a deputy director of the National Institutes of Health, said in a telephone news conference on Friday.

The changes would be in the rules that cover topics like the informed consent that research participants must provide and the institutional review boards that oversee research at universities and hospitals. Initially drawn up by the Department of Health and Human Services in the 1970s and ’80s, the system was adopted by 14 other federal agencies and departments in 1991 and became known as the Common Rule.

But some experts said it had become too cumbersome.

‘It’s a terrible drag on getting good research done,’ said Dr. Robert J. Levine, a professor of medicine and a bioethicist at Yale who headed the university’s institutional review board for 31 years. He said Sunday that while he had not thoroughly reviewed the government’s lengthy proposal, he was encouraged by what he had seen.

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New Scientist (Issue 2817) features Linda Geddes’ article “Tribal wars: DNA testing divides American Indians”. Geddes reports on the membership disputes among the Chukchansi Tribe in Central California, USA. The Tribe Council will vote this month if new applicants must undergo a DNA test to prove they “really” are related to a member of the community. From the point of view of the tribal council this is an effort to block access to the benefits coming with the membership (e.g. the right to a share of the Chukchansi Gold Resort and Casino’s profits) and grant access only to those qualified (“blood quantum”). Tribe members, would-be members, and external observers fear this consumption of genetic information may open the door for false disputes around ancestry; contribute to delegitimizing other cultural criteria for establishing membership; and possibly, to undermine tribal sovereignty.

Reference:

GEDDES, Linda
(2009). “Tribal wars. Genetic testing divides Native Americans”. New Scientist 210(2817): 8-10.The article can be accessed through the New Scientist webpage (through a subscription).

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