Title : China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this author
link : China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this author
China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this author
You saw it here on Healthcare Renewal first.In 2005 and 2007 I'd written the posts:
"Academic abuses in biomedicine vs. Indigenous Peoples: The Genographic Project" (http://hcrenewal.blogspot.com/2005/09/academic-abuses-in-biomedicine-vs.html)
and
"Informed consent, exploitation and developing a SNP panel for forensic identification of individuals" (http://hcrenewal.blogspot.com/2007/07/informed-consent-and-developing-snp.html)
respectively.
The theme of these posts was that genetics research (especially that centering on profiling) by unscrupulous scientists could have unforeseen, adverse (if not devastating) consequences to minority populations and oppressed peoples.
A common theme between those posts was the work of Yale Professor of Genetics Kenneth Kidd, PhD, a professor with whom I'd worked as Yale faculty myself on the Yale-Saudi Arabia collaboration in clinical genetics and birth defects of the mid 1990s. That relationship did not end well [1, 2].
Dr. Kidd, a key figure in the controversial, failed Human Genome Diversity Project, a genetics collection effort feared by indigenous populations being studied due to their concerns about exploitation and abuse, had tried in early 1996, at the end of the Saudi project, to misappropriate the EMR/genetics analysis, query and correlation system I'd written. This had caused me great distress and expense in defense of my IP [1].
This fundamental breach of ethics and trust by such a key figure in that type of global research had led me to have serious concerns about the future path of such research.
Now we have this large-scale controversy with Kidd as a central figure:
China Uses DNA to Track Its People, With the Help of American Expertise
The Chinese authorities turned to a Massachusetts company and a prominent Yale researcher as they built an enormous system of surveillance and control.
New York Times
Sui-Lee Wee, NYT correspondent, Beijing bureau
Feb. 21, 2019
https://www.nytimes.com/2019/02/21/business/china-xinjiang-uighur-dna-thermo-fisher.html
BEIJING — The authorities called it a free health check. Tahir Imin had his doubts.
They drew blood from the 38-year-old Muslim, scanned his face, recorded his voice and took his fingerprints. They didn’t bother to check his heart or kidneys, and they rebuffed his request to see the results.
“They said, ‘You don’t have the right to ask about this,’” Mr. Imin said. “‘If you want to ask more,’ they said, ‘you can go to the police.’”
Mr. Imin was one of millions of people caught up in a vast Chinese campaign of surveillance and oppression. To give it teeth, the Chinese authorities are collecting DNA — and they got unlikely corporate and academic help from the United States to do it.
The 'unlikely academic help' came from Kenneth Kidd, PhD at Yale School of Medicine.
As I read this NYT article, sent to me by a Yale friend aware of the 1990's issues, I realized my concerns expressed on this blog in 2005/2007 were sadly prescient:
China wants to make the country’s Uighurs, a predominantly Muslim ethnic group, more subservient to the Communist Party. It has detained up to a million people in what China calls “re-education” camps, drawing condemnation from human rights groups and a threat of sanctions from the Trump administration.
Collecting genetic material is a key part of China’s campaign, according to human rights groups and Uighur activists. They say a comprehensive DNA database could be used to chase down any Uighurs who resist conforming to the campaign.
How to get a comprehensive DNA database for that purpose? Find a naive (if not reckless) American professor to help:
To bolster their DNA capabilities, scientists affiliated with China’s police used equipment made by Thermo Fisher, a Massachusetts company. For comparison with Uighur DNA, they also relied on genetic material from people around the world that was provided by Kenneth Kidd, a prominent Yale University geneticist.
... Dr. Kidd said he had been unaware of how his material and know-how were being used. He said he believed Chinese scientists were acting within scientific norms that require informed consent by DNA donors. [More on this pollyanna claim below - ed.]
China’s campaign poses a direct challenge to the scientific community and the way it makes cutting-edge knowledge publicly available. The campaign relies in part on public DNA databases and commercial technology, much of it made or managed in the United States. In turn, Chinese scientists have contributed Uighur DNA samples to a global database [of Kidd's - ed.], potentially violating scientific norms of consent.
In my view, Kidd knew, should have known, or should have made it his business to know that collaboration with scientists from a communist country with a history of rights issues - especially collaboration with those working for the national police - could carry great risk.
Instead, he permitted unfettered access to his lab and work to national police-related officials, as per the NY Times article:
... Calling Dr. Kidd
Kenneth Kidd first visited China in 1981 and remained curious about the country. So when he received an invitation in 2010 for an expenses-paid trip to visit Beijing, he said yes.Dr. Kidd is a major figure in the genetics field. The 77-year-old Yale professor has helped to make DNA evidence more acceptable in American courts.His Chinese hosts had their own background in law enforcement. They were scientists from the Ministry of Public Security — essentially, China’s police.During that trip, Dr. Kidd met Li Caixia, the chief forensic physician of the ministry’s Institute of Forensic Science. The relationship deepened. In December 2014, Dr. Li arrived at Dr. Kidd’s lab for an 11-month stint. She took some DNA samples back to China. [And perhaps more? - ed.]“I had thought we were sharing samples for collaborative research,” said Dr. Kidd.
My mind boggles at the guilelessness (at best) or Marxist/totalitarian sympathies (at worst), the latter of which I'd experienced firsthand from Kidd in the 1990s.
... Dr. Kidd’s data became part of China’s DNA drive.In 2014, ministry researchers published a paper describing a way for scientists to tell one ethnic group from another. It cited, as an example, the ability to distinguish Uighurs from Indians. The authors said they used 40 DNA samples taken from Uighurs in China and samples from other ethnic groups from Dr. Kidd’s Yale lab.
Note in my aforementioned 2007 HC Renewal post "Informed consent, exploitation and developing a SNP panel for forensic identification of individuals" (http://hcrenewal.blogspot.com/2007/07/informed-consent-and-developing-snp.html) I'd expressed great concern over this type of work, specifically Kidd's own paper "Developing a SNP panel for forensic identification of individuals", Kenneth K. Kidd, Andrew J. Pakstis et. al, Journal Forensic Science International: Forensic Sci Int. 2006 Dec 1;164(1):20-32, PubMed link and abstract here. I had worked with both Ken and Andy at Yale.
Frankly, I was disturbed by such research being performed by someone I knew, from personal experience, to have been predatory of my own work in disregard of my rights [1].
In patent applications filed in China in 2013 and 2017, ministry researchers described ways to sort people by ethnicity by screening their genetic makeup. They took genetic material from Uighurs and compared it with DNA from other ethnic groups. In the 2017 filing, researchers explained that their system would help in “inferring the geographical origin from the DNA of suspects at crime scenes.”For outside comparisons, they used DNA samples provided by Dr. Kidd’s lab, the 2017 filing said. They also used samples from the 1000 Genomes Project, a public catalog of genes from around the world.
In retrospect, I wonder just how many of the ideas and methodologies for "sorting people by ethnicity by screening their genetic makeup" were home-grown in China, and how much came from Kidd directly. I was also disturbed by the realization that my computer work back in the 1990s, the object of Kidd's expropriation efforts, could be exploited to facilitate related ends. More on that issue below.
... The data flow also went the other way.Chinese government researchers contributed the data of 2,143 Uighurs to the Allele Frequency Database, an online search platform run by Dr. Kidd that was partly funded by the United States Department of Justice until last year. The database, known as Alfred (https://medicine.yale.edu/lab/kidd/research/alfred/), contains DNA data from more than 700 populations around the world.
There's the Kidd Lab connection again...
Dr. Kidd said he was “not particularly happy” that the ministry had cited him in its patents, saying his data shouldn’t be used in ways that could allow people or institutions to potentially profit from it. If the Chinese authorities used data they got from their earlier collaborations with him, he added, there is little he can do to stop them.
He said he was unaware of the filings until he was contacted by The Times.
Kidd appeared to be claiming his work had been - what was that word describing what I'd experienced from Kidd in 1996 - oh yes - "misappropriated".
 |
| I play the world's smallest violin in sympathy with Dr. Kidd. |
In the Feb. 22, 2019 Yale Daily News article "Yale geneticist provided data used for Chinese surveillance of Uighurs" (https://yaledailynews.com/blog/2019/02/22/yale-geneticist-provided-data-used-for-chinese-surveillance-of-uighurs/), Kelsang Dolma ’19 — a Tibetan student who has long protested the Chinese government, called for Kidd to resign.
Dolma added that Kidd’s comment in the New York Times that he was not “particularly pleased” with how his data was used was “absolutely laughable.”
I tend to agree.
I tend to agree.
... Dr. Kidd also said he considered his collaboration with the ministry (of State Security) to be no different from his work with police and forensics labs elsewhere. He said governments should have access to data about minorities, not just the dominant ethnic group, in order to have an accurate picture of the whole population.
In his view - all governments, apparently, should have access to fundamental data about minorities, which might include, for example, those with a racist, nationalist view on socialism or communism, I wonder?
Was this attitude reflective of an academic's worldly naivete, and/or academic Marxist sympathies - or was it something worse, such as gross negligence, I ponder? (Gross negligence - "a lack of care that demonstrates reckless disregard for the safety or lives of others, which is so great it appears to be a conscious violation of other people's rights to safety. It is more than simple inadvertence" - https://www.law.cornell.edu/wex/gross_negligence)
As for the consent issue, he said the burden of meeting that standard lay with the Chinese researchers, though he said reports about what Uighurs are subjected to in China raised some difficult questions.
The sole burden of obtaining consent for data Kidd allowed to be placed into his Alfred database - a database partly funded by the United States Department of Justice - was on the Chinese? Kidd has no responsibility regarding the provenance of the data? That is a remarkable dereliction of duty of caution and prevention of exploitation of human subjects, in my opinion. Again, my concerns back in 2005-7 (not to mention 1996) seem sadly prescient.
“I would assume they had appropriate informed consent on the samples,” he said, “though I must say what I’ve been hearing in the news recently about the treatment of the Uighurs raises concerns.”
... American lawmakers and officials are taking a hard look at the situation in Xinjiang. The Trump administration is considering sanctions against Chinese officials and companies over China’s treatment of the Uighurs.
Would it be unreasonable for me to opine that, if Kidd did not know, at least he should have known, or should have made it his business to know, such things before allowing a Chinese State Security official unfettered access to the Kidd Lab at Yale School of Medicine?
Finally, I note with great discomfort that the EMR I created for the Yale-Saudi collaboration and King Faisal Hospital in 1995 - to better the care of children with birth defects and prevent their occurrence via understanding of the genetics issues - had precisely the innovative features needed by laypeople (politicians and police, for example) to more fluidly leverage population-level data on medical, genetic, and social characteristics for, let me euphemistically say, questionable purposes.
Kidd went out of his way back then to misappropriate my work. There was a Chinese national from the Beijing region in my area at the time that Kidd and his colleague especially wanted to have my source code, in fact.
I never fully understood the vigor and indeed rancor involved in their efforts, including that of a university Associate General Counsel (who had never taken the Bar, no less) for which they all received significant blowback and adverse outcomes. (The full story in context is at http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=yale_informatics_story where it has resided since the early 2000s.)
Now, Kidd is involved in international controversy in a matter where, to my significant discomfort, my work and/or ideas, that he had possession of, could be exploited for purposes that I certainly never intended.
In summary, I seem to have been a canary in the coal mine of a type, and an alarm-ringer regarding a line of inquiry by an academic with whom I'd had a rather disconcerting interaction in the past. It seems my concerns about unintended negative consequences regarding minority/oppressed populations has now come true.
I hope my concerns about my own work are simply wrong.
-- SS
------------------------------------------------------
Footnotes:
[1] This sequence of 1996 emails speaks for itself:
My assertion of copyright to my work to Ken Kidd (kidd@biomed.med.yale.edu) and others, dated May 2, 1996, after Kidd and others at Yale had demanded I surrender it to them without agreements as to its further use or development:
Message 6:
From silver Thu May 2 10:01:09 1996
Return-Path:
Received: by seviche.med.yale.edu (4.1/SMI-4.1)
id AA18953; Thu, 2 May 96 10:00:57 EDT
Date: Thu, 2 May 96 10:00:57 EDT
From: silver
Message-Id: <9605021400.AA18953@seviche.med.yale.edu >
To: perry_miller@qm.yale.edu
Subject: SAYGR
Cc: bachlap@aol.com, carolyn_slayman@qm.yale.edu, kidd@biomed.med.yale.edu
Status: R
Dear Perry,
My intentions regarding the SAYGR database are unchanged since my letter to you, Ken Kidd, and Dr. Slayman dated February 28, 1996. However, there are intellectual property issues currently under consideration. I want you to understand I am acting to ensure fairness, protection of my rights, and avoidance of later disputes.
In that regard, please direct any further inquiries about SAYGR to:
George A. Coury, Esq.
Bachman & LaPointe, P.C.
Patent Attorneys
Suite 1201
900 Chapel Street
New Haven, CT 06510-2802
(203)777-6628
From silver Thu May 2 10:01:09 1996
Return-Path:
Received: by seviche.med.yale.edu (4.1/SMI-4.1)
id AA18953; Thu, 2 May 96 10:00:57 EDT
Date: Thu, 2 May 96 10:00:57 EDT
From: silver
Message-Id: <9605021400.AA18953@seviche.
To: perry_miller@qm.yale.edu
Subject: SAYGR
Cc: bachlap@aol.com, carolyn_slayman@qm.yale.edu, kidd@biomed.med.yale.edu
Status: R
Dear Perry,
My intentions regarding the SAYGR database are unchanged since my letter to you, Ken Kidd, and Dr. Slayman dated February 28, 1996. However, there are intellectual property issues currently under consideration. I want you to understand I am acting to ensure fairness, protection of my rights, and avoidance of later disputes.
In that regard, please direct any further inquiries about SAYGR to:
George A. Coury, Esq.
Bachman & LaPointe, P.C.
Patent Attorneys
Suite 1201
900 Chapel Street
New Haven, CT 06510-2802
(203)777-6628
More precisely worded at advice of my IP counsel, June 1, 1996:
Date: Sat, 1 Jun 1996 10:43:32 -0400
From: 104560.3300@compuserve.com
Subject: Use of SAYGR database
To: Perry Miller (perry-miller@quickmail.yale.edu )
Cc: Allen Bale (allen.bale@yale.edu),
Kei Cheung (kei-cheung@quickmail.yale.edu),
"George Coury, Esq." (bachlap@aol.com),
Matt Healy (healy@seviche.med.yale.edu),
Ken Kidd (kidd@biomed. med.yale. edu),
Xia Liu (xia-liu@quickmail.yale.edu),
Henry Lowendorf (henry-lowendoff@quickmail.yale.edu ),
Ellen Matloff (ellen-matloff@quickmail.yale.edu ),
Prakash Nadkarni (prakash-nadkarni@quickmail.yale.edu ),
Fred Sayward (sayward@seviche.med.yale.edu),
"Dr. Carolyn Slayman" (carolyn-slayman@quickmail.yale.edu )
Message-Id: 199606011043-MC 1-461 -AC84@compuserve.com
This letter is to inform you that I, sole author of the SAYGR database, unconditionally retain all rights pursuant to U.S. copyright law and Yale University copyright policy (Yale's copyright policy can be viewed at http://www.yale.edu/ocr/invent_policies/copyright.html ).
At this time, no licensing arrangements exist between the author and Yale University for use of this software. Until suitable licensing arrangements are made, Yale University may not use the SAYGR database source code, executables, or documentation for any purpose whatsoever. All binary executables, source code, and documentation are to be erased or returned to me immediately.
If Yale University is interested in further demonstration, use, or development of this software, please contact:
George Coury, Esq.
Bachman & LaPointe, Patent Attorneys
900 Chapel St.
New Haven, CT 06510
(203)777-6628
From: 104560.3300@compuserve.com
Subject: Use of SAYGR database
To: Perry Miller (perry-miller@quickmail.yale.
Cc: Allen Bale (allen.bale@yale.edu),
Kei Cheung (kei-cheung@quickmail.yale.edu
"George Coury, Esq." (bachlap@aol.com),
Matt Healy (healy@seviche.med.yale.edu),
Ken Kidd (kidd@biomed. med.yale. edu),
Xia Liu (xia-liu@quickmail.yale.edu),
Henry Lowendorf (henry-lowendoff@quickmail.
Ellen Matloff (ellen-matloff@quickmail.yale.
Prakash Nadkarni (prakash-nadkarni@quickmail.
Fred Sayward (sayward@seviche.med.yale.edu)
"Dr. Carolyn Slayman" (carolyn-slayman@quickmail.
Message-Id: 199606011043-MC 1-461 -AC84@compuserve.com
This letter is to inform you that I, sole author of the SAYGR database, unconditionally retain all rights pursuant to U.S. copyright law and Yale University copyright policy (Yale's copyright policy can be viewed at http://www.yale.edu/ocr/
At this time, no licensing arrangements exist between the author and Yale University for use of this software. Until suitable licensing arrangements are made, Yale University may not use the SAYGR database source code, executables, or documentation for any purpose whatsoever. All binary executables, source code, and documentation are to be erased or returned to me immediately.
If Yale University is interested in further demonstration, use, or development of this software, please contact:
George Coury, Esq.
Bachman & LaPointe, Patent Attorneys
900 Chapel St.
New Haven, CT 06510
(203)777-6628
I was then stunned by the following urgent emails from a visiting scientist I received soon after:
Panicked emails from scientist Marios Kambouris, visiting from Saudi Arabia, June 6, 1996, 2:24 PM:
Subj: I need help
Date: 96-06-12 14:24:09 EDT
From: mkambour@BIOMED.MED.YALE.EDU (MARIOS KAMBOURIS, PHD)
To: scotsilv@aol.com (S Silverstein MD)
Scot:
I hope you will find this message in the next 30 minutes and you will reply.
I have a meeting with kidd at 3:00 pm and he wants me to give him the SAYGR manual (I told him that I do not have a hard copy, and I will look at my disks at home to see if I have a soft copy) and he wants to see whether my version of SAYGR is the same as his and if it is he wants my versiton. I will erase all version indications so he would not know what version it is. He says his version has a bug in the pedigree template? and is difficult for him to use.
I did not want to let him know that I know what is being going on. What do you want me to do if he insists getting a copy of my SAYGR? I hope he does not. If you do not respond I will try my best to make it look like our versions are identical so he would not want what I have. He has not said anything about any legalities that he is involved with SAYGR so I pretend not to know anything. I do not want to put you or myself in a compromizing position and let him know that we are friends and we talk. I will for sure not give him the manual and I will do the impossible not to give him the program.
I will let you know what happened.
I should be interesting.
Marios
Another panic email, June 12, 1996, 4:39 PM:
Subj: READ, READ
Date: 96-06-12 16:39:23 EDT
From: mkambour@BIOMED.MED.YALE.EDU (MARIOS KAMBOURIS, PHD)
To: scotsilv@aol.com (S Silverstein MD)
Hye Scot:
I just got out from my meeting with Kidd. He insist in getting my copy of SAYGR because he knows you were making some improvements for me. He also insists in getting the manual. I managed the manual issue by saying that I do not have it with me. I have a lot of interesting information that we need to discuss. Do you have the version that you gave Purkarsh so I can give that to Kidd instead of mine? He did not mention anything about being in dispute with you on the rights to use it. Please advice as soon as you can.
He has his own copy and Purkarsh has one too. They had a problem figuring out which is the most updated and he felt that mine probably was and that is why he wanted it.
Let me know what you want me to do
I will stay here late in case you try to get in touch with me.
Marios
Subj: READ, READ
Date: 96-06-12 16:39:23 EDT
From: mkambour@BIOMED.MED.YALE.EDU (MARIOS KAMBOURIS, PHD)
To: scotsilv@aol.com (S Silverstein MD)
Hye Scot:
I just got out from my meeting with Kidd. He insist in getting my copy of SAYGR because he knows you were making some improvements for me. He also insists in getting the manual. I managed the manual issue by saying that I do not have it with me. I have a lot of interesting information that we need to discuss. Do you have the version that you gave Purkarsh so I can give that to Kidd instead of mine? He did not mention anything about being in dispute with you on the rights to use it. Please advice as soon as you can.
He has his own copy and Purkarsh has one too. They had a problem figuring out which is the most updated and he felt that mine probably was and that is why he wanted it.
Let me know what you want me to do
I will stay here late in case you try to get in touch with me.
Marios
(Dr. Kambouris' Saudi employers were not pleased by his being misled and pressured when he told them about these events.)
It cost me $10,000 to defend my intellectual property from this assault. The full story in context is at http://www.ischool.drexel.edu/faculty/ssilverstein/cases/?loc=cases&sloc=yale_informatics_story where it has resided since the early 2000s.
------------------------------------------------------
[2] By way of full disclosure, Kidd was formerly a colleague until he tried to misappropriate my intellectual property 23 years ago, an EMR system I authored for the King Faisal Specialist Hospital & Research Centre's molecular genetics director and its pediatric genetics clinic. (I'd actually spent a week with him in Riyadh in 1995 before he left for another country, living in the same expatriate apartment with him there during my visit to install my EMR program. I thought I knew the man; I was wrong.)
My research was in making EMR's easy to use, especially by non-computer and/or non-clinician experts; my EMR employed advanced "user interaction by schema" principles I'd invented. It was designed to be used by laypeople to capture, manage, organize, ask complex queries of, and sift through a population's genetics data, correlated with people's religious, tribal, political and other groups and associations of an unlimited number of types in a highly flexible, free-form manner, and more.
A small sample of screens from that work (note that in 1995, 640x480 was near state of the art on laptops for which this application was in part intended as an in-the-field workstation):
I hope this work, or my human-computer interaction ideas, did not fall into the wrong hands courtesy Dr. Kidd.
thus Article China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this author
that is all articles China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this authorThis time, hopefully can provide benefits to all of you. Okay, see you in another article posting
.
You now read the article China Uses DNA to Track Its People, With the Help of American (Yale) Expertise - from a Yale scientist sadly all too familiar to this author with the link address https://choosehealthys.blogspot.com/2019/02/china-uses-dna-to-track-its-people-with.html
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