By Lara Trace Hentz
In 1994, for a whopping $500, Earl Bland and I did a DNA test/blood-draw in Springfield, Illinois. Within a month, we knew it was 99.9% certain that Earl was my biological father. Happy? Of course!
When it comes to ethical genetics, NOW I am still concerned about the co-opting (and theft) of our DNA data by FBI/Police/Big Science/BIG PHARMA. As you know there are new floods of adoptees using DNA tests since states are still NOT opening our adoption records or helping us locate our own families.
How do THEY get this information? When an adoptee uses a DNA test to find their parent(s), for example.
Years ago I published a review “BLOOD FOR MONEY” about the film Leech and Earthworm.
Ever wondered if genetic research is being done on Indigenous people? Absolutely and often without their knowledge. The film “The Leech and the Earthworm” chronicles the new Columbus – a genetic scientist who wants to map your genetic identity, and will even steal to get it.”
One interview that stands out is with Larry Baird, leader of the Nuu-chah-nulth Tribe of Vancouver Island, Canada, who was outraged to find out that DNA samples taken from over 800 tribal members almost 20 years ago for arthritis research were taken to Oxford and used for other purposes without their consent.
Here’s a link to my essay: https://www.academia.edu/10350970/Blood_For_Money
The companies 23AndMe and Ancestry.com will collect your DNA sample, charge you money to tell you who you are related to (and your ancestry) — BUT they are under no obligation to keep this private. As far as I can tell they use this data to sell your information, and of course profit from it. (Always follow that money, right?)
— http:LaraTraceHentz (@Trace15) October 17, 2015
“Long before Ancestry.com got into the DNA game, it had ties to the Mormon church. Its owners were two Brigham Young University grads who had made their fortune selling Latter-day Saints publications on floppy disks. Access to Ancestry.com was free at LDS Family History Centers, and recently the company signed a deal with the church’s genealogy non-profit, FamilySearch.org.
“Ancestry.com’s huge advantage over services like 23andMe is its age; since it has been collecting ancestral data about its users for decades, it knows health information not just about its users, but about their great-grandparents and great-great-grandparents. SOURCE
AND NOW THIS: Cops use DNA to catch suspects in Cold Cases
“Outside the consumer realm, though, 23andMe has had some victories. The company’s massive database landed it some megadeals with pharmaceutical giants Genentech and Pfizer earlier this year, and last month, it launched its own drug-discovery lab, 23andMe Therapeutics.”
If this is the edge of science, we need MORE, not less, regulation… Trace
I will end with this essay by the Indigenous Peoples Council on Biocolonialism
SOUNDING THE ALARM in 2000:
Indigenous Peoples Critical of The Human Genome Project
Source: http://www.ipcb.org Published June 27, 2000
Nixon, NV– Scientists representing the publicly funded Human Genome Project, and the private venture, Celera Corporation, announced today they have completed a rough map of the human genome. The human genome consists of two sets of 23 chromosomes, with each set containing a total of 3 billion chemical units.
“This announcement, and genetic research generally, raises serious issues of concern to indigenous peoples,” said Debra Harry, Northern Paiute, and Executive Director of the Indigenous Peoples Council on Biocolonialism. She says, “Now that the sequencing project is complete more scientists will turn their attention to human genetic diversity, which includes the collection and study of the DNA of indigenous peoples. This is likely to result in patents on the genetic inheritance of indigenous peoples, and possible manipulations of their DNA, which violate the natural genetic integrity of their ancestry.”
Brett Shelton, Lakota, an attorney, and IPCB’s Director of Policy and Research states, “Therefore, indigenous peoples need to first obtain information about genetic research likely to be done in their communities. And, indigenous peoples need to assert their sovereign right to control genetic research activities that affect them. They must set limitations and enforce them when research activities affect their peoples.” The IPCB has developed a model ordinance for tribal governments that can be used to govern scientific research in tribal jurisdictions.
Harry says, “I’m concerned that this furthers the hype for more genetic research. The public is lead to believe this will lead to cures of human diseases, however, cures are not going to be realized anytime in the near future if at all, since most human illnesses are a result of complex interactions between genes and the environment.”
“Genetic research of this scale hurts, rather than benefits, indigenous peoples because it diverts public funds away from direct health care and prevention programs.” She says “the millions of dollars spent on human genome sequencing has diverted attention away from far more current and pressing public health needs. The same amount of attention to insure we have access to basic health care, clean water, safe foods, and a healthy environment is an effort from which we would see real benefits.”
Several critics of the current widespread emphasis on genomic research have noted that economic oppression, not genetics, is a major cause of illness in minority/ethnic communities. Harry notes, “An emphasis on genetic research will pose no benefits to vast numbers of the American public, whose health problems are a product of contaminated environments, and economic poverty, not inherited diseases.”
Dr. Jonathan King, Professor of Biology at MIT and a member of the board of directors of the Council for Responsible Genetics states “We are concerned that the emphasis on gene sequences will be used to imply that genes are at the basis of a variety of human disease and conditions, when in fact the great body of evidence, establishes that the majority of human ill health is not inherited but is due to external insult including pollution, infection, inadequate or in appropriate diet, physical accident, or excess stress or social disruption such as wars.” King further adds, “We note that preventing damage to human genes from carcinogens is a far more effective public health strategy than allowing the disease to develop and then attempting gene therapy. ”
Other scientists criticize the reductionist perspectives in the search for genetic causes and cures of disease. Dr. Stuart Newman, Professor of Cell Biology and Anatomy New York Medical College and a board member of the Indigenous Peoples Council on Biocolonialism notes, “Although there are potentially beneficial uses for the information gathered in the Human Genome Project, there is also the great threat that this information will be used to persuade people that they are not good enough, biologically. This will be justified by promised improvements to human health, but unless carefully monitored and regulated, this emphasis on genetics will have a divisive effect, whereby those categories and groups of people that have traditionally been marginalized will now learn that their genes are inferior and need to be improved.”
There are many potential negative aspects of human genetic research which are not being widely discussed in the general public, yet have serious social consequences such as genetic discrimination, or the hazards posed by genetic engineering. These are serious questions that have not been addressed, and require public debate and democratic control.
This work brings us closer to a future where the human genome can be privatized, not to benefit people’s health but to fatten corporate profits. Already, patents have been filed, and then later abandoned, on the DNA of indigenous peoples from the Solomon Islands and Panama. The U.S. Patent and Trademarks Office (PTO) actually approved a patent on the cells lines of a Hagahai man from Papua New Guinea. The patent was granted to the U.S. Department of Health and Human Services and the National Institutes of Health in March 1994. In late 1996 the NIH abandoned the patent. However, the Hagahai cell line is now available to the public at the American Type Culture Collection as ATCC Number: CRL-10528 Organism: Homo Sapiens (human) for $216 per sample. This trend is likely to continue as new potentially profitable genes are identified in indigenous populations.
Numerous patents have been granted to both public and private interests for partial or full human genes. For instance, Celera has applied for 6,500 gene patents (1), while Incyte has filed patent applications covering 50,000 individual human genes (2). In order to stop the privatization and commodification of the human genome, several citizens groups are calling for national legislation to mandate the US Patent and Trademark Office to cease granting patents on human genes, and to exclude living creatures, their genes or components from the patent system.
Genetic engineering also poses risks for humanity because human biology can be manipulated in a manner that redefines what it is to be human. For example, Maori tribal members in New Zealand were horrified to learn they were subjects of transgenic experiments where their human DNA was inserted into sheep. Apparently one elderly tribal member was persuaded to sign a consent form on behalf of the entire tribe. “The thought of human (Maori) and animal genes being mixed was totally abhorrent and offensive both culturally and morally.”(3) This experimentation was carried out by PPL Therapeutics, the commercial arm of the Roslin Institute which holds the patent on cloning technology for all mammals. This incident highlights the potential for human genetic manipulation when mechanisms for oversight, control, and accountability are lacking.
Newman comments, “Some scientists and writers have indeed begun to advocate remaking human biology using the new genetics, and predict that those who are unable or unwilling to make use of these technologies will fall by the wayside. A few organizations have taken up the fight to protect society from the negative uses of this project. Some scientists, physicians, and entrepreneurs will try to play god, and think they have the right to redefine life. The public has to understand this and set limits.”
The Indigenous Peoples Council on Biocolonialism is organized to assist indigenous peoples in the protection of their genetic resources, indigenous knowledge, and cultural and human rights from the negative effects of biotechnology. The organization encourages indigenous peoples to pay critical attention to genetic research, and to establish laws that protect their resources from exploitation. More information on the work of the IPCB can be found on their website at www.ipcb.org.
1. Celera Press Release “Celera compiles DNA Sequence Covering 90% of the Human Genome”, January 10, 2000
2. Incyte Press Release, November 22, 1999 PRNewswire
3. L.Pihama, C. Smith, Hands Off Our Genes: A Case Study on the Theft of Whakapapa (Maori lineages), International Research Institute for Maori and Indigenous Education, University of Auckland 1997
For further information: www.ipcb.org