Bogus Study: Spectrum 10k

 

Notice how the same graphic is used for this study 
as Spark for Autism. It's literally the same idea. 
Spectrum 10k is yet another DNA collection of autistic DNA. This time its being brought out by the Autism Research Center.  University of Cambridge (David Rowitch), Autism Research Centre (Simon Baron-Cohen, Carrie Allison, Varun Warrier, Isabelle Garvey, Armandina (Mina) Almanza Gutierrez, Paula Smith), Wellcome Sanger Institute (Matthew Hurles, Hiliary Martin), and the University of California Los Angeles (UCLA) (Daniel Gecshwind) are leading it.  It is supposedly the largest study of autism in the United Kingdom. 

Spectrum 10k aims to investigate genetic and environmental factors that contribute  to the wellbeing of autistic individuals and their families. We hope 10,000 autistic people and, where possible, thier families will take part."

It has been proven time and time again that autism is purely genetic. The "environmental factors" they are talking about is that bogus testosterone link. This attacks everyone who has polycystic ovarian syndrome, which is a known common comorbidity with autism. 

They are including autistic people of all ages, genders, ethnicities and intellectual abilities. They only want residents of the UK and they must have a clinical diagnosis. Registered autistics can invite biological relatives (autistic or allistic) to participate. 


How to participate is pretty much the same as Spark for Autism. Sign up online, receive a DNA test kit and send it back via the mail. After signing up, there is a online survey that must be filled out that takes 30 minutes to complete. If they really want autistic help, why are they making it so much work?

THE PARTICIPANTS ARE NOT PAID

That's right, they expect disabled people to provide them with data FOR FREE. As much as I dislike Spark, at least they gave gift cards for participation!

They reiterate that they are not looking for a cure but they want autistic DNA. The very person taking the lead in this project is searching for the DNA link to autism so he can create a prenatal test. Why else would you want a prenatal test for autism unless it goes down the same route as Down syndrome?



The study will not look for a cute for autism and does not aim to eradicate autism. Every member of the Spectrum 10k team values and respects autistic difference and are working to promote inclusion, acceptance and dignity for autistic people throughout society. 

How is this true when the leading researcher has been searching for a prenatal test? Using identity first language and neurodiversity language is just a ploy to draw more people in. 

This is how they explain it:


They are asked : 

Do you aim to develop genetic testing for autism?

This study does not aim to develop a test for autism. Through increased understanding of genetic and environmental influences and mechanisms, which underlie autism, we hope to develop pathways for improved diagnosis and medical support. However, future knowledge may lead to improved diagnosis through genetic testing. We believe autism is an integral part of human neurodiversity and therefore are ethically opposed to any form of eugenics. 

That was a lot of words for yes and we will talk in circles to confuse you. 

What they say only in the fine print is that they are making this database to share with other researchers and it can be disclosed without the participants consent. The name will not be attached to the genetic information. So, the very basic thing that makes up an individual is being shared and sold to other researchers. If that isn't being violated, nothing else is. 

They will only share it with external academic researchers that "aim to make valuable contributions to autism research." This can mean anything coming from these people. Would you want your DNA contributing to the prenatal test that causes autistic babies to be aborted? 

In another paragraph they say that they do share data with commercial collaborators. It is optional but the participant needs to know to opt out of it. Not everyone will think of this when signing up for it. They are preying on people and using thier DNA. These commercial collaborators could be to help epilepsy or to alleviate gut difficulty (again with autistic poop?). They cannot be completely clear on what this means. 

"We will carefully review all requests to use Spectrum 10k data; anonymized data will be shared with research groups that have received ethical approval and who's aims are in line with our efforts to improve the well being of autistic people." 

Does not feel trustworthy. 

They will receive the saliva, analyze it and will be stored on the servers at the University of Cambridge and password protected. All of know from using the internet, that can be hacked. Nothing will be traced to the donor but that is still their DNA code. 

Participants will not receive feedback on thier individual genetic data. So they aren't paying the individuals for thier genetic code and they aren't getting feedback on how their genetic code is helping? Got it. 

They are disguising it as protecting the poor, fragile autistics:

We understand that some autistic individuals and thier family members would like to receive feedback about thier DNA. However, we do not currently have the facilities to provide feedback on your genetic data in an ethical manner that minimizes distress with the right support and counseling services. For this reason we arecurrently unable to provide feedback on your genetic data. We may consider developing an infrastructure in the future.

In other words, we won't do it but we say we may to keep the autistics quiet. 

They do not allow access for the participants to access their own genetic data. 

They are not sequencing genetic code. 

Parents are consenting for their young children. Once the parents consent to this and the child grows up, it cannot be taken back. That is a huge betrayal of trust. I would never give away my kids DNA. I would hope other parents feel the same but autistic children and vulnerable adults are being abused with various substances every day by their loved ones. 

Instead of wasting time and resources on trying to find out why we are autistic, why not spend the time and research on what can improve our lives? Its not rocket science, researchers need to do what is right and not constantly try to fix us. 

Update 9/10/21 Study has been Paused!

Yes, due to the outcry by the autistic community, Spectrum 10k has been paused. This is what the study team had to say:


An apology and an update

I am writing on behalf of the Spectrum 10K research team, including the co-lead researchers, to provide a further update regarding the study. From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.

 

Pausing whilst we listen

We have decided to pause any further recruitment of new participants into Spectrum 10K. We will also not analyse any data already collected in Spectrum 10K. This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K. This may take several months. Details of the consultation will be announced on our website.

 

Anyone who wishes to register their interest in Spectrum 10K during the pause will be able to do so here. We will not send out any new saliva kits until the consultation is complete. If you have received a saliva kit you can send us a saliva sample that we will store securely (without any genetic analysis) until the consultation is complete.  

 

The University of Cambridge, the Wellcome Trust, and the Cambridgeshire & Peterborough NHS Foundation Trust (co-sponsor of the study) are all fully supportive of us pausing Spectrum 10K to undertake this listening. They recognise the study’s scientific importance and that there has been no breach in the protocol as approved by the NHS research ethics committees. This pause reflects that we want to listen to and address concerns.

 

Thank you

Thank you to those autistic people and their families who have shown their support for the study and continue to do so. We hope that together with autistic people and their families we can address the concerns.

Are they listening? Are they going to consult with the autistic community? Will they admit that this study can lead to the eradication of autism from the planet much like the prenatal test for Down Syndrome? Only time will tell. Keep fighting the good fight. 

The HRA Responds

How HRA Complaint is Handled

The Health Research Authority (HRA) is one of the different governing agencies responsible for regulating and governing health and social care research in the UK. Much like the FDA in the United States. They received an abundance of questions and concerns about Spectrum 10k. Researchers who want to take part in a study have to apply to HRC for approval which includes an independent Research Ethic Committee (REC). 

The HRA appoints the REC in England. They are responsible for setting up and running REC. This includes appointing members of REC and its members responsibly to consider the ethics of a research application. REC are made up of volunteers, no one is paid. They usually include a mixture of experts like doctors and lay members who are not healthcare professionals. (personal note: it should include autistics in this REC)

When concerns are made known to the HRA about a study that has gotten approval, they are overseen by a group of senior staff. This includes the Chief Executive of the HRA, the Head of Corporate Governance and the Director of Approvals Service. This group must establish whether this is a complaint about the HRA or about a study. If it's about a study, they need to make sure that the concerns that are based are within the jurisdiction of the HRA. Then, they investigate concerns either in line with their Complaints Policy or their third party complaints procedure

Thier investigation may include reviewing the documents that were submitted by the study team. These documents were used to make an ethics decision by the REC. They may talk to staff and the volunteer REC that made that ethics decision. They would also contact the study team to ask questions about the concerns that were raised. They would also contact the complaintant to inform them that they received the complaint and they will be informed about the outcome of the investigation. Depending on the study, they may need to work with other regulation agencies. 

If there is a case of serious concerns, the REC can suspend or withdraw its ethics decision to give time to consider new information. Favorable ethics decision is a legal requirement of research studies involving NHS patients, thier tissue or thier data. A pause would be needed for this case. 

Complaint about Spectrum 10k

The HRA has received both complaints about the HRA's approval of Spectrum 10k and concerns about the research itself. They are currently working to understand all aspects which are within the jurisdiction of the HRA. They said they are committed to a transparent investigation and will publish findings on thier website following the outlined procedure of complaints and concerns. 

When the study team announced the pause in the study, it does not change their process for handling concerned raised with the HRA. They recognize the participants rights and wellbeing should always be a primary concern of all studies. 

We, the autistic worldwide community, await the results of this investigation. 

Sources:

https://spectrum10k.org

https://spectrum10k.org/statement-10th-september/

https://www.hra.nhs.uk/about-us/news-updates/spectrum-10k-how-hra-manages-your-feedback

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