Talk:UK Biobank

Personal blogs are inappropriate sources
This statement: "some people objected to the NHS passing on such data to third parties without explicit consent, and also had concerns about the data security in such a large project" was sourced to a public discussion on an online forum (obviously the wrong sort of source for Wikipedia) and to a personal blog. Glyn Moody is someone I respect and usually agree with, but personal blogs like his do not count as reliable sources for claims made in an article. I want to be clear about why I'm doing this, but I'm removing both those sources. If there are reliable sources that back up the statement, they should be included, but we can't mention every opinion just because someone says it online. MartinPoulter (talk) 12:48, 15 January 2013 (UTC)
 * Your doing this was entirely appropriate.  Blue Rasberry    (talk)   15:58, 15 January 2013 (UTC)

Smart Watch impact?
I am one of the half a million participants.! I was wondering if there was much public discussion over the types of contextual data that was collected? Also does anyone know of work on the relation of smartphone/ smart watch (such as the upcoming Apple watch) health apps and inputing on this scale? Szczels (talk) 13:10, 16 March 2015 (UTC)

External links modified
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 * Added archive https://web.archive.org/web/20120515111234/http://scienceblogs.com/geneticfuture/2009/11/decode_genetics_finally_goes_u.php to http://scienceblogs.com/geneticfuture/2009/11/decode_genetics_finally_goes_u.php

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External links modified (January 2018)
Hello fellow Wikipedians,

I have just modified 3 external links on UK Biobank. Please take a moment to review my edit. If you have any questions, or need the bot to ignore the links, or the page altogether, please visit this simple FaQ for additional information. I made the following changes:
 * Added archive https://web.archive.org/web/20060214144838/http://www.ukbiobank.ac.uk/docs/draft_protocol.pdf to http://www.ukbiobank.ac.uk/docs/draft_protocol.pdf
 * Added archive https://web.archive.org/web/20081227054532/http://www.ukbiobank.ac.uk/docs/EGF20082.pdf to http://www.ukbiobank.ac.uk/docs/EGF20082.pdf
 * Added archive https://web.archive.org/web/20100329101030/http://www.ukbiobank.ac.uk/faqs/contacted.php to http://www.ukbiobank.ac.uk/faqs/contacted.php

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Edit Request/Article Review
Hello, Wikipedia, I am a COI editor acting on behalf of UK Biobank and I would like to suggest some improvements to the page. I think the page should be updated with recent discoveries and missing information related to the institution, and irrelevant, unnecessary or outdated information should be removed.

I have composed these changes in article format in my sandbox, but you will find detailed reasoning for each change with before/after notes below. I am particularly interested in reaching out to @Psychologist Guy and @PamD as you have been recently active enacting changes on the page.

I understand that the nature of some of the changes may require knowledge of biology/genetics to verify, so I have split this request into sections as other changes just require common sense copy editing. I believe this article might also be within the scope of Wikiproject Molecular Biology.

Thank you in advance for looking through my changes with additions in bold and removed text in strikethrough whenever you have the time, and I shall await your feedback!

1. Lead
What should be changed: The expansion of the introduction by approximately two paragraphs summarising in more detail the scope of the work carried out by the institution. The current "Funding" section has also been incorporated into this section at the end.

Why I think it should be changed: The current introduction is missing important information such as the range of data collected and the impact on the research community. The current "Funding" section is buried near the end of the article and is short enough to incorporate into the Introduction.

How it would look:

UK Biobank is a large long-term prospective biobank study in the United Kingdom (UK) that houses de-identified biological samples and health-related data on half a million people. which is investigating the respective contributions of genetic predisposition and environmental exposure (including nutrition, lifestyle, medications etc.) to the development of disease. Volunteer participants aged 40-69 were recruited between 2006-2010 from across Great Britain and consented to share their health data and to be followed for at least 30 years thereafter with the aim to enable scientific discoveries into the prevention, diagnosis, and treatment of disease. Participants provided detailed questionnaires, physical measurements and samples Participants provided biological samples, physical measurements and questionnaire information at baseline assessment, and have provided more data over time.

It began in 2006. UK Biobank has been cited as an important resource for cancer research. '''UK Biobank holds more than 10,000 variables of data on many of their 500,000 participants to inform research including biological samples, body and brain imaging data, bone density data, activity tracking and lifestyle questionnaire data. They have over 15 million biological samples stored, which can be requested for use by researchers, and their online database holds over 30 petabytes of data. Nature has referred to UK Biobank as an "unprecedented open access database."'''

'''Their human genome sequencing database, proteomic database, and human imaging project are the largest in the world. The initial phase of their imaging study (a project where detailed images of the brain, heart, abdomen and bones of 100,000 people are captured) where whole-body scans were taken of 5,000 people broke records at the time for scale. As of 2024 up to 83,000 people have been imaged of the stated goal of 100,000. Since 2019 there have also been repeat imaging studies of 10,000 participants with the aim of collecting 60,000 participants' repeat images to help researchers understand disease progression. The project is enabling scientists to study the onset of diseases such as cancers, heart disease, and age-related conditions in the early stages of their development.

'''Since 2012, 30,000 researchers from over 90 countries have registered to use UK Biobank. As of November 2023 there have been over 9,000 peer-reviewed publications using UK Biobank data, including over 3,000 in 2023.'''

Based in Stockport, Greater Manchester, it is incorporated as a limited company and registered charity in England and Wales, and registered as a charity in Scotland.

'''As of August 2022 UK Biobank is 20 years old. UK Biobank is funded by the Medical Research Council (MRC), the Wellcome Trust, UK government and charitable sources, and philanthropic donations.'''

2. Development
What should be changed: The Development section should be moved further up the page to follow the lead, coming before the "Design" and "Initial Information collected" sections.

I would like to see it renamed "History and development" with my version including additional early background information related to the institution and more recent developments. The current "Recruitment" section would also be incorporated into this section.

Why I think it should be changed: Renaming and combining these sections will make the page more concise and easy to follow while also including missing historic and recent information related to the institution.

How it would look:

UK Biobank was conceived in the early 2000s, with Professor Sir Rory Collins appointed as the Principal Investigator and Chief Executive of UK Biobank in 2005. An incremental approach was adopted to developing the study procedures and technology, using systems designed and developed by the Clinical Trial Service Unit. This consisted of a series of pilot studies of increasing complexity and sophistication with interludes for assessment of results and additional scientific input. In-house trials were conducted during 2005, and a fully integrated clinic was run at Altrincham, Greater Manchester throughout Spring 2006 where 3,800 individuals were assessed. On 22 August 2006, it was announced that the main programme would recruit men and women aged between 40 and 69 based from up to 35 regional centres. BBC’s Medical Editor Fergus Walsh was among the volunteer group.

Following the initial pilot stage in the 2005-6 period, the main study began in April 2007 and by the end of that year 50,000 people had taken part. Recruitment reached 100,000 in April 2008, 200,000 in October 2008, 300,000 in May 2009, 400,000 in November 2009 and passed the 500,000 target in July 2010. The volunteers were largely healthy, wealthy and white European. Rather than recruiting more participants into the biobank, the organisation is helping other institutions establish and run similar initiatives. Participant enrolment was declared complete in August 2010. However recruitment proved more efficient than hoped and only 22 centres had been opened when the recruitment target of 500,000 was reached in 2010. In May 2023, UKRI announced that UK Biobank was set to receive £127.6m to move to a purpose-built facility at Bruntwood SciTech's Manchester Science Park.

In October 2023, a number of funders including Eric Schmidt and Ken Griffin announced further funding for the next five years.

3. Design
What should be changed: The first two sentences of this section can be deleted from the "Design" section. I would like to also see the sentence referencing researchers access to data altered to reflect the specific type of data which was made available.

Why I think it should be changed: In point 1 I recommended incorporating these sentences into the lead, so if point 1 has been carried out this would be unnecessary duplication. At present, the sentence referencing the type of data available is vague and only refers to "genetic information".

How it would look:

The study is following about 500,000 volunteers in the UK, enrolled at ages from 40 to 69. Initial enrollment took place over four years from 2006, and the volunteers will be followed for at least 30 years thereafter.

[...]

In 2017 researchers were able to access the database including genetic information genetic data in the resource for the first time, specifically genotyping data for the whole cohort.

4. Usage
What should be changed: This section would move up to follow the "Initial Information collected" section. It would be renamed "Access to UK Biobank" alongside the addition of information related to accessibility and recent developments.

Why I think it should be changed: The current section name is confusing; renaming better highlights that this section refers to how researchers access and use UK Biobank data. The current information is also out of date, stopping at 2017; I have added updates up to 2023.

How it would look:

The UK Biobank dataset was opened to applications from researchers in March 2012. The resource is available to scientists from the UK and outside, whether they work in the public or private sector, for industry, academia or a charity, subject to verification that the research is health-related and in the public interest. Researchers must register to be approved to use UK Biobank data. Researchers are required to publish their results in an open source publication site or in an academic journal and return their findings to the UK Biobank. '''In 2021, UK Biobank launched its cloud-based Research Analysis Platform (UKB-RAP), providing information technology infrastructure to store and analyse UK Biobank's large dataset regardless of the researcher's own technological capabilities. By 2023 the platform had over 5,000 users. The platform is hosted by Amazon Web Services, which also pledged $1.5 million in research credits for early career researchers and researchers from low and low-middle income countries to reduce limitations when collating, storing and securely accessing data.'''

By 2023 30,000 researchers had registered to use the resource and over 9,000 peer-reviewed articles based on UK Biobank data had been published.

5. Extensions
What should be changed: I propose merging this section with relevant information from the current "Ongoing developments" section. As the "Ongoing Developments" section includes provisional plans from 2018, some of which were not enacted, I have suggested removing these. Additional information has also been added to reflect recent developments.

I would also like to recommend the renaming of the section to "Data Additions". Why I think it should be changed: The merging of the two sections, alongside the addition of more recent information, will both streamline the page and allow readers to better understand the scope of the work which the institution has carried out since its inception. The renaming I feel is appropriate as unique additional data sets have been continually added; they are not an extension or extensions of initial projects.

How it would look:

1. This bullet point would move text from the "Ongoing developments" section to fit in the bullet list in the "Extensions" section as follows:


 * In 2014 and 2015 120,000 participants completed a questionnaire on cognitive functions. Four of the tests were repeats of the initial assessment and two tests (symbol digit substitution and trail making) were new.
 * A new type of assessment centre opened in 2014 to collect imaging data. The visits extended the initial dataset to include magnetic resonance imaging (MRI) scans of brain  heart and abdomen, as well as neck-to-knee volumetric MRI scans, whole body dual-energy X-ray absorptiometry (DXA) scan of bones and joints, ultrasound measurements of the carotid arteries and resting 12-lead electrocardiogram (ECG). Initial data on 5,000 participants was released at the end of 2015 and by January 2024 over 25,000 participants had been scanned. It is planned to scan 100,000 participants, and to do additional repeat scans on 60,000 of these 2–3 years later.
 * In 2015 and 2016, 117,500 participants completed questionnaires on occupational history and related medical information.

2. This bullet point would move from the "Ongoing developments" section to fit between these two current bullet points in the "Extensions" section:


 * In 2016 and 2017 137,400 participants completed questionnaires on mental health events including subjective well-being estimates, psychotic experiences, self-harm behaviours, traumatic events and cannabis and alcohol use.
 * A set of additional assays on the blood and urinary samples were being conducted in 2016 and 2017 with blood results expected to be released in Q4/2018.
 * A genomic assay of 820,967 SNPs was conducted on the participants blood samples. Data from an initial 150,000 participants were released in 2015, the remainder in July 2017, and the first results in October 2018.

3. The bullet point regarding the 2019 exome sequence data release to be updated with figures reflecting the amount of data available as of 2023; at present it represents the figure from 2020:


 * In 2019 exome sequence data from 50,000 persons was released, with 200,000 being available by 2020 . with 470,000 being available in 2023.

4. I would like to add this update from 2023 to the end of the "Extensions" bullet list:


 * In 2023, UK Biobank released the whole genome sequencing data of all 500,000 participants, the largest number of whole genome sequences ever released for medical research. The release was supported by UKRI, Wellcome, industry partners including Amgen, AstraZeneca, GSK, and Johnson & Johnson, with sequencing conducted by deCODE Genetics and the Wellcome Sanger Institute.

6. Findings
What should be changed: I have split the current findings section into sub-sections reflecting notable findings chronologically (most recent first) and added a few recent developments with subheadings ahead of these.

Why I think it should be changed: This present section is missing some key historic and more recent findings resulting from the institution's datasets. The subheadings make it easier for readers to follow.

How it would look:

Proteomic data
'''Using samples from UK Biobank, the largest ever study examining the links between genetic variants and proteins in the blood was released in 2023, identifying over 14,000 associations between common genetic variants and proteins circulating in the bloodstream. This proteomic dataset within UK Biobank has since been used to identify the protein signatures of the earliest stages of dementia, which could be used to develop blood tests to diagnose dementia and Alzheimer’s up to fifteen years before diagnosis and, in another study, potentially predict cancer up to seven years before diagnosis.'''

Polygenic risk scores
'''UK Biobank has led to the development of the polygenic risk score concept, using UK Biobank data to pinpoint individuals who may be at a high risk of developing common diseases including cardiovascular disease and lung cancer and to identify “functionally important variants” across the genome. UK Biobank data has also been used in combination with PrimateAI-3D, an AI algorithm trained on common genetic variants found in the genomes of 233 primate species, to identify potentially harmful mutations in humans.'''

Activity monitoring data to predict Parkinson's
'''The physical activity data of 100,000 participants from UK Biobank was collected from smartwatches over a seven-day period. This data has been used to find that smartwatch data could be used to help predict Parkinson’s disease up to seven years prior to symptoms appearing.'''

Mental health
A 2023 review found that participants with sense of meaning and purpose in life have a decreased risk of dementia.

Road noise
A 2022 review of UK Biobank data found that road traffic noise exposure increases risk of CVD mortality, stroke and all-cause mortality.

Effects of diet
Reviews of UK Biobank data have found that pescatarians and vegetarians have a lower risk of colorectal and prostate cancer compared to red meat eaters. Consumption of processed meat increases risk of breast cancer. They have also found that men with higher total and central adiposity have an increased risk of prostate cancer death.

COVID-19 repeat imaging study
'''UK Biobank collected repeat imaging scans on approximately 2,000 participants who had been infected with SARS-CoV-2 (the COVID-19 virus) and compared the images to those obtained before the pandemic to investigate the longer-term effects of COVID-19 on internal organs. This was the first longitudinal study of this size on COVID-19 whereby participants were scanned before they contracted the disease. One resulting piece of research investigated data from 785 participants of UK Biobank (aged 51–81 years) imaged twice using magnetic resonance imaging, including 401 cases who tested positive for infection with SARS-CoV-2 between their two scans. This research showed that even mild infection with the virus that causes COVID-19 results in physical changed to the brain. A reduction in brain areas related to smell processing was found.'''

Type 1 Diabetes incidence rates
'''In 2017 research from University of Exeter using UK Biobank data found that, rather than being a disease of children and young adults, the incidence rate of Type 1 diabetes remains equal up to age 60. In the findings 58% of type 1 diabetes cases were diagnosed prior to 30 years and 42% were diagnosed in adults between the ages of 31-60.'''

7. Ethics and Governance
What should be changed: I would like to see it moved down to follow the updated "Findings" section.

Why I think it should be changed: I think that whilst this section is important, it makes sense for it to come after sections related to the work of the insitution rather than its current position where it disrupts the flow of the page for the reader between "Initial information collected" and "Recruitment".

8. Opinion
What should be changed: I would like to add comments from the former UK Secretary of State for Science, Innovation and Technology, Michelle Donelan, in relation to UK Biobank and keep the "UK Biobank" name consistent throughout the section.

Why I think it should be changed: Michelle Donelan's comments reflect government opinion on UK Biobank and its importance.

How it would look:

There was some early criticism, however. GeneWatch UK, a pressure group that claims to promote the responsible use of genetic information, asserted that the complexity of the programme could result in the finding of "false links between genes and disease", and expressed concern that the genetic information from patients could be patented for commercial purposes. UK Biobank's chief executive described such a risk as "extremely low, if it exists at all."

Some literature has raised concerns that the UK Biobank is not representative of the diversity of the UK population or is not applicable to diverse populations.

In 2023 the UK's Secretary of State for Science, Innovation and Technology Michelle Donelan described UK Biobank as "mak[ing] an unparalleled contribution to science across the whole world, by putting invaluable information at researchers' fingertips. It is without question a jewel in the crown of UK science, and an envy of the world".

9. Related projects
What should be changed: This section should be removed in its entirety.

Why I think it should be changed: The information contained within this section has very low to low relevance to the page topic, and seems promotional in places.

10. Infobox
What should be changed: The established date in the infobox should be 2002, not January 2007. The logo also needs to be updated to the newer version which can be found here: https://www.ukbiobank.ac.uk/media/1mvkkicw/uk-biobank-blue-transparent.png

Why I think it should be changed: The scheme was first proposed in 2002, whilst it was in 2006 when data collection first began for the project.

How it would look:

Burchrusks (talk) 10:41, 19 June 2024 (UTC)