Arthur T Knackerbracket has found the following story:
Advocates for genomic research in Africa are worried about fallout from a dispute that has roiled the Wellcome Sanger Institute, a major genome research center in Hinxton, U.K. Last year, whistleblowers privately accused Sanger of commercializing a gene chip without proper legal agreements with partner institutions and the consent of the hundreds of African people whose donated DNA was used to develop the chip. “What happened at Sanger was clearly unethical. Full stop,” says Jantina de Vries, a bioethicist at the University of Cape Town in South Africa, who has followed the dispute.
Sanger’s troubles have mounted since the beginning of the dispute, which was first made public last month. The institute says it did not commercialize the chips or profit from them, but admits in a statement that its relationship with some African partners has been “disrupted.” Stellenbosch University in South Africa has demanded that Sanger return samples. In addition, one whistleblower says she was fired because of the controversy, and a large research team has left the institute and ended a plan to study the genomes of 100,000 Africans.
More broadly, Sanger’s mishandling of the matter could erode trust between researchers and African people, setting back genomic research that could benefit them, de Vries says. “The tragedy and the scandal is that the people who will pay the price are Africans.”
Genome sequencing can reveal the genetic roots of diseases and offer clues for new drugs and personalized medicine. But whole genome sequencing costs $800 to $1200 per person. Researchers use gene chips as a cheaper shortcut to look at key spots in a person’s genome where variation might be expected. The chips can lower the cost to less than $100 per sample, but first they need to be designed based on entire genomes from a given population.
In a $2.2 million deal inked in 2017, Thermo Fisher Scientific made 75,000 gene chips, or microarrays, for Sanger based on African genomic data gathered through several collaborations. Working with a unit of the Medical Research Council in Entebbe, Uganda, researchers at Sanger sequenced nearly 2100 genomes of Ugandan people. To capture more of the variation on the continent, they partnered with other institutions in Africa to sequence the genomes of about 400 more people.
Sanger planned to use the new chips to study the genomes of up to 100,000 Africans, looking for genetic insights into conditions such as heart disease, diabetes, and high blood pressure. The data could benefit Africans, and because populations in Africa are more diverse than other populations, they also might contain genetic variants—rare or missing elsewhere in the world—that could help researchers understand the mechanisms behind common diseases.
[...]
After the [4] whistleblowers filed their complaint, the Wellcome Trust asked an external lawyer to investigate. A summary of the lawyer’s report, which Sanger released in October 2018, addressed a separate complaint about alleged bullying by senior Sanger management, concluding that no wrongdoing took place. Regarding the gene chip work, it found there was "no wrongful exploitation of scientific work.”
All four whistleblowers have since left Sanger. One says she was fired in June for bringing Sanger “into disrepute” for writing emails to colleagues about the issue. Sanger declined to comment on personnel. The 75,000 gene arrays, stored at Sanger, have not been used and will expire in December.
(Score: 1, Funny) by Ethanol-fueled on Friday November 01 2019, @02:16AM (3 children)
Wasn't Margaret Sanger the woman who lived in Africa with the gorillas and was the star of that movie Gorillas in the Mist? [youtube.com]
Why oh why would she turn her silverback to them now?
(Score: 0, Troll) by Ethanol-fueled on Friday November 01 2019, @02:55AM (1 child)
FUCK YOU BASTARDS
(Score: -1, Redundant) by Anonymous Coward on Friday November 01 2019, @03:02AM
Didn't get the downmod you were looking for, or drinking something stronger than blood 2nite?
(Score: 0) by Anonymous Coward on Friday November 01 2019, @05:47AM
Close. She was the woman who lived in 'murica, who wanted to destroy all the gorillas, and started Planned Gorillahood.
(Score: 4, Informative) by Barenflimski on Friday November 01 2019, @02:20AM (3 children)
I read that article a couple of times. It sounds like Sanger's employees got upset the other companies were getting money and filed whistle-blower complaints because they didn't get the same 'bonus.'
In the end this sounds like an office fight about money where some lawyers got involved and found this violation. All of a sudden after they all wanted money they are all saints and wish it was given to the people that gave them the information about the product they were developing to help them?
The argument seems to be that the agreement the "Africans" signed wasn't comprehensive enough and should have included the line "This might be commercialized."
The goal of the project they were all working on sounds legit. It sounded like it will even lower the cost of these genetic tests to about 1/7th the original cost, helping the entire continent.
Maybe I'm missing something? Please help me be outraged.
(Score: 0) by Anonymous Coward on Friday November 01 2019, @03:22AM
What were the rules both groups agreed to regarding the further 75-100k genomic samples they were going to recieve? Would they be used strictly for non-patented/commercialized research that would be published for all, or paywalled only for their corporate cronies?
I understand both sides of this argument, but look at HeLa for an example of why commercializing access to someone's genetic material without any form of consent is politically and financially important. I'm all for science when it's published free for all, but when it's paywalled, fuck 'em all.
(Score: 1) by Sally_G on Friday November 01 2019, @05:52AM
That was my impression of the whole thing. I would feel more comfortable if they used Tribal names, rather than so much "africa africa africa". Those people in Africa remain pretty much faceless, nameless, and lost in the dust of a domestic United Kingdom squabble.
(Score: 2) by Rupert Pupnick on Friday November 01 2019, @12:14PM
Agree with your assessment. The article is very confusing, but it seems like a the revelation of a kickback scheme is being used to fuel allegations that the genetic information is being somehow abused by being "commercialized". If the objective is to improve the health of a large population, how else do you get that improvement out to all those people without commercializing it?
(Score: 2, Insightful) by Anonymous Coward on Friday November 01 2019, @02:38AM (3 children)
Wall-of-text summary, even if you read through it you have no clue how it relates to the headline.
(Score: 0) by Anonymous Coward on Friday November 01 2019, @02:59AM (2 children)
100,000 Africans want their share of $2.2 million.
(Score: 0) by Anonymous Coward on Friday November 01 2019, @03:02AM (1 child)
What, in visa debit cards? And what the fuck is "gene chip" anyways?
(Score: 0) by Anonymous Coward on Friday November 01 2019, @07:33PM
It's a new potato chip not made from potatoes.