by Dr. Hsien-Hsien Lei
Posted June 28, 2007 in DNA Around the World, DNA in General
The Karitiana Indians of the Amazon feel as if part of their heritage has been auctioned off by researchers who misled them. They first gave their blood in the 1970’s after making contact with “the outside world.” In 1996, they again gave samples of their blood in exchange for medicine, which the Karitiana Indians claim they never received. Similar to the American Indians who were studied to investigate the relationship between the MAOA gene, childhood sexual abuse, and alcoholism, Amazonian Indians live in closed communities where their lifestyle, living environment, and disease inheritance patterns make it easier to conduct genetic studies.
But the extent to which their genetic data would be used was not clear to the Karitiana Indians when they donated their blood. To their shock and anger, they recently discovered that their DNA is now being sold via the Coriell Institute for Medical Research which is funded by the US National Institutes of Health and other givernment agencies. You can obtain a listing of 25 cell cultures from the Karitiana Indian people with details such as race, age, gender, and disease status. A 1.0 ml cell culture costs $85 while 0.05 mg of DNA costs $55.
The situation is not as sinister as it seems, however. The Corielle Institute sells specimens only to scientists who sign an assurance form agreeing to guidelines that specify:
- That the biomaterials will be used in compliance with all regulations protecting human subjects.
- That the biomaterials or any products derived from them will not be commercialized.
- That the biomaterials will not be distributed to a third party (that the researcher will not “share” with a colleague) without authorization by the Coriell Institute for Medical Research as agent for the National Institute of General Medical Sciences.
The Karitiana Indians are not satisfied and along with other Amerindian groups, they claim that selling or using their DNA in unapproved ways is biopiracy. For example, many indigenous groups have expressed their distrust of the National Geographic’s Genographic Project, including the Maori of New Zealand and Alaska natives who want National Geographic to stop â€œsucking indigenous blood.â€
The United Nations Permanent Forum on Indigenous Issues recommended the halt of The Genographic Project in May 2006. The Project is practically at a standstill anyway since almost every federally recognized tribe in North America is refusing to participate. Clearly, scientists and others asking indigenous populations to donate biological samples need to do a better of job of communicating the overarching goals and benefits such studies can achieve.
Judith Greenberg, director of genetics and developmental biology at the National Institute of General Medical Sciences:
This is sort of a balancing act. We don’t want to do something that makes a whole tribe or people unhappy or angry. On the other hand, the scientific community is using these samples, which were accepted and maintained under perfectly legitimate procedures, for the benefit of mankind.
Legitimate for us maybe, but not necessarily for the Karitiana people.
How do you think indigenous populations should be compensated for their participation in genetic studies?
*(Does this answer your question, Berci?)
Scotland on Sunday, June 23, 2007
Don’t Sell Our DNA Say Cook Islanders...
First Results from The Genographic Project Mitochondrial DNA Database...
Mendel’s Garden Genetics Blog Carnival #16...
Dr. Jim Watson’s Genome Sequenced for
What does DNA mean to you? #12...
DNA Video: The Secret of Life...
Eye on DNA Headlines for 15 February 2008...
Sorry, the comment form is closed at this time.
Search Eye on DNA
- Genetic Genealogy on Faces of America
- DNA Network Tweet Cloud
- Genetics = Real Science
- Larry David’s DNA Test
- Lopez Tonight First Late-Night Show to Offer DNA Testing
- American Genes Don’t Exist
- Knowledge about Genetic Risk is Power or is it Fear?
- Murderer Gets Reduced Sentence Because His Genes Made Him Do It
- Video: Knome’s Ari Kiirikki Speaks with Medgadget
- DNA Toys: Ben 10 and Digimon Digivice
- 100 Facts About DNA
- Salaries for Jobs in Genetics
- Fetal Gender DNA Tests Answer Common Pregnancy Question...Or Not
- How To Determine Paternity Without A DNA Test
- What does DNA mean to you?
- Eye on DNA Interview: Dr. Tzung-Fu Hsieh of RedTracer DNA Test for the Red Hair Gene, MC1R
- Books About DNA: The Crime of Reason by Robert B. Laughlin
- Genetically Modified Organisms Bring in the Cash
- Navigenics Introduces Physician Portal and Annual Insight Service
- People Who’ve Had Their Genomes Sequenced
09/29/2009 07:03 am
- Larry David’s DNA Test
11/17/2009 02:52 am
- 23andMe DNA Tests for $399, Down From $999
09/10/2008 04:33 am
- Crazy Genetic Marketing Ideas
07/05/2008 09:14 pm
- Parenting Children Using Genetic Tests
05/18/2009 02:09 am
- Business of DNA
- DNA @ Google Answers
- DNA and Disease
- DNA and Genealogy
- DNA and the Law
- DNA Around the World
- DNA Fun
- DNA in General
- DNA Inventions and Gadgets
- DNA Lab Talk
- DNA Podcasts and Videos
- DNA Quotes and Excerpts
- DNA Testing
- Gene Therapy
- Genetic Engineering
- Genetically Modified Foods and Organisms
- Jobs Involving DNA
- Personalities with DNA
- Polls About DNA
- January 2010
- November 2009
- October 2009
- September 2009
- August 2009
- July 2009
- June 2009
- March 2009
- February 2009
- January 2009
- December 2008
- November 2008
- October 2008
- September 2008
- August 2008
- July 2008
- June 2008
- May 2008
- April 2008
- March 2008
- February 2008
- January 2008
- December 2007
- November 2007
- October 2007
- September 2007
- August 2007
- July 2007
- June 2007
- May 2007
- April 2007
- Six Impossible Things Before Breakfast
- Nurse Practitioner News
- Christina Loves
- The Panda’s Thumb
- Writing Spark
- Flags and Lollipops