Note: A special thank you to the contributor of these links and information. I’m not very familiar with Wellcome but am on the fast-track to learning more now.
I’m sharing the links messaged to me here about Wellcome, a U.K. genetics lab, misusing African DNA. (Below)
There’s also information on some well known folks, and their work, in Autistic History that are problematic for Autistics today including: Simon Baron-Cohen, Matthew Hurles, Daniel Geschwind, David Rowitch.
By Erik Stokstad Oct. 30, 2019 , 4:00 AM
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.
Rhys Blakely, Science Correspondent
Monday October 14 2019
An African university has demanded that a leading genetics laboratory returns DNA samples taken from indigenous tribes that it sought to commercialise without consent.
Documents seen by The Times show that the Wellcome Sanger Institute in Cambridgeshire has been warned by Stellenbosch University in South Africa that its conduct could bring about “serious legal and ethical consequences”.
The dispute involves hundreds of samples collected by scientists at African universities and the Lebanese American University. Some came from indigenous communities, such as the Nama people from South Africa, Namibia and Botswana, who were told that they would be used only to study “population history and human evolution”.
Other subjects were told on consent forms that their samples “will not be used for any medically related study”.
- Prof Simon Baron-CohenUniversity of Cambridge, United Kingdom
- Dr Matthew HurlesWellcome Sanger Institute, United Kingdom
- Prof Daniel GeschwindUniversity of California, Los Angeles, USA
- Prof David RowitchUniversity of Cambridge, United Kingdom
Autism is a lifelong developmental condition and about 1% of the population is thought to have the condition. It is largely genetic and between 400 and 1,000 genes are thought to contribute to autism. However, fewer than 100 genes with a link to autism have been identified.
We will accelerate gene discovery by collecting DNA samples from 10,000 people with autism in the UK and their immediate families. We will combine this information with genetic information from 90,000 other people with autism already gathered from around the world. This large-scale resource will enable us to identify several genetic variants that contribute to the development of autism. This information will allow us to better understand the biology of autism, improve on existing methods for diagnosing autism and investigate if there are genetically-defined subgroups of people with autism.
The Wellcome Sanger Institute in the UK had planned to commercialize a genetics array based on African DNA samples, whistleblowers allege, which would have violated the terms of agreements for using the materials, The Times reports. Two universities in Africa have condemned any commercial endeavors using the samples, some of which came from indigenous tribes.
“This conduct of the Wellcome Sanger Institute raises serious legal and ethical consequences,” Stellenbosch University in South Africa wrote to Sanger Director Mike Stratton in March, according to The Times.
Whistleblower complaints and documents reviewed by the news outlet indicate that Sanger had discussed a deal with Thermo Fisher to sell an array for investigating the genetic influence behind diseases in Africa and had 75,000 produced. Yet, according to The Times, the DNA samples used in the design of the arrays were obtained with the promise that they would be studied for insights into human evolution and not for the development of products or for medical research. Ultimately, the arrays were never sold, and Sanger denies any wrongdoing.
“Relationships with some African partners in a particular project were disrupted. The cause of concern was a potential commercialisation proposal from an individual working at the institute,” a Sanger spokesperson tells The Times. “The institute did not pursue this proposal.”
On Twitter, geneticist Deepti Gurdasani writes that she is one of the whistleblowers and claims that she lost her job after she filed her complaint. “It’s great to see the silence around this being broken. Myself, and another whistleblower were dismissed after we raised concerns about this to senior management at @sangerinstitute and @JeremyFarrar at @wellcometrust. Eight more people were made redundant.”
Sanger has been dealing with accusations of poor management, harassment, and the expected loss of a number of top faculty members. While Stratton has admitted that there was mismanagement at the institute, an independent investigation cleared him of any wrongdoing.
Kerry Grens is a senior editor and the news director of The Scientist. Email her at firstname.lastname@example.org.