My Letter to the UK Biobank

I will update with any reply from them: Update: Reply after the fold - exactly what you would expect ... Double Update: I have deleted the tepid e-mail I received and attached the e-mail that the UK Biobank sent to researchers which appears to lay down the hammer on these shenanigans. Kudos to the UK Biobank and I hope that their actions will match the sentiment of their e-mail.

My Letter:
To Whom it May Concern:

I am writing this letter to express my concern over an apparent misuse of the UK Biobank. I am referring specifically to this study: https://www.nature.com/articles/s41467-019-13585-5

Genome-wide analysis identifies molecular systems and 149 genetic loci associated with income

It is my understanding that the UK Biobank was conceived to identify health issues related to genetics and one would presume that the majority of those who have provided DNA and other information about themselves, did so altruistically, with the understanding that it would be put to such use in order to aid in the discovery of new disease treatments and to improve health care for the citizens of the UK and beyond. Therefore, I find it rather disturbing that a study that purports to find genes related to a person’s income is given the use of the UK Biobank to make such an analysis. Such studies contain more than a hint of eugenics, and promote the harmful impression that a person’s income is somehow related to their genetic endowment which, among other issues, has political implications related to the current economic system, its validity and fairness.

This study appears to be related to other studies that have utilized the UK Biobank, with many of the same authors, that try to identify genes for “intelligence” and “educational attainment.” Clearly, such studies have created a slippery slope for this type of dubious science to seep into general acceptance and I think they cloud the original intent and purpose of the UK Biobank. Such studies have a sordid history, often embraced by those with a racist agenda, and judging from the interest it is garnering on social media sites, this study is no exception. One might wonder whether the Biobank volunteers would reverse their consent if they understood that their DNA information was being accessed for these dubious purposes.

Moreover, while such studies are nicely self-serving for the highly educated, high-income scientists who perform them, it would probably come as no surprise to most in the UK that the genes particular individuals possess have an influence on how much education and income they receive, considering the long history of social class stratification and the likelihood that such genes are nothing more than identifiers of particular social and racial categorizations, wherein their “income” is heavily influenced by which of these categories they are identified with, rather than some sort of magical genes that provide an entrepreneurial advantage for a select few. There is simply no reason that such studies should be given access to the UK Biobank. They create harmful and erroneous perceptions and divisions and turn the UK Biobank into a political entity rather than an aid to human well being.

In addition, and most importantly, it appears that the authors of this study deliberately misrepresented their intent, claiming that their study would be used to determine “The relationship of cognitive function and negative emotions with morbidity and mortality: an aetiological investigation.” This does not appear to be at all representative of the study they performed, as even the title of the study makes clear. They also apparently applied for an extension with the following rationale:

“One outcome we are also interested in exploring in relation to prior cognitive function and other factors is dementia. For instance, we would like to investigate the extent to which prior cognitive function helps predict later onset of vascular dementia independently of other risk factors. We have research experience in the cognitive epidemiology of dementia. This is not an outcome that we specified in our original application so I am writing to ask for approval to expand the scope of our project to include dementias as an outcome.”

Anyone reading this study can see that both of these descriptions have little to do with the true focus of the study and, in reality, are a complete misrepresentation. It seems clear that they were just gratuitously added in order to give the study the kind of authenticity it would need to secure the use of the UK Biobank, with the knowledge that it otherwise did not merit it, or more sinisterly, was part of an attempt to perform a study that would be otherwise viewed as ethically questionable. It is a fraudulent and hubristic maneuver, that shows a disdain for the intent and spirit of the UK Biobank, and is arguably scientific misconduct. Although this and other such studies will pay lip service to health and well-being issues, it appears much more likely that these issues are merely a “Trojan Horse” for their true intent, which is a scientific justification for societal privilege and elitism by way of genetic determinism.

I would like to suggest that the UK Biobank apply more scrutiny to studies of this nature, and ask you to consider preventing the authors responsible for this study from further access to the UK Biobank.

As noted, I removed the intitial response to my e-mail and have provided the e-mail sent out to UK Biobank researchers after the fold:

Dear Researcher

At the same time as wishing you all the very best for 2020 and the new decade, I would like to take this opportunity to remind you and your colleagues of your obligations when using the UK Biobank data as part of an approved Access application:

• All use of the UK Biobank resource must be health-related research that is in the public interest
  Participants specifically gave consent for health-related research that is in the public interest, and all applications are approved on that basis. Researchers should set out clearly in their application why their research is health-related and in the public interest, and be prepared to justify this in any subsequent publication of their research. In addition, researchers must only use UK Biobank data (or samples) within the scope of their approved application. If there is a desire to extend the scope, then a request to do so should be submitted to us.
• Access to UK Biobank data is restricted to approved applicants and their named colleagues
  The principal applicant is required to ensure that only approved researchers named on the application are able to access the UK Biobank data (or samples) provided for that application. In addition, all named researchers should be actively involved in research that is conducted within the scope of the application (and it would, therefore, be expected that such researchers would appear as co-authors on at least some of the research papers arising from the application).
• Annual reports on the progress of research applications
  On each anniversary of an Access application being approved, the principal applicant is required to provide an annual report summarising progress using the template provided here. Likewise, at the conclusion of the research application, a final report should be provided. Continued access to the resource (including data refreshes, scope extensions and new applications) is contingent on such reports being submitted in a timely fashion.
• Advance notice is required of any potentially contentious presentations or publications
  In order that we can be prepared for concerns that may be raised about uses of the resource, researchers are obliged to inform UK Biobank reasonably in advance of any presentations or publications of findings that may be considered to involve potentially contentious issues (e.g. associations with intelligence, ethnicity or sexuality; eugenics or foetal selection). As mentioned above, researchers should aim to describe the health-related and public interest nature of the research in any public materials.
• Return of derived data and underlying methodology for inclusion in the resource
  In order that important derived data-fields can be incorporated into the UK Biobank resource for use by others, researchers are required to return key derived data (please review the document here for guidance), together with an outline of the underlying methodology for generating such data, within 6 months of a publication of results that use such data or 12 months of the end-date of the application, whichever is first.

Given the large numbers of research groups and researchers using UK Biobank, we are dependent on them complying by the rules of the game in order that we can maintain the trust of the participants and the wider public. However, as you’ll be aware, the Material Transfer Agreement states that UK Biobank will take all necessary action that is available to it (including stopping further access to the resource) if it determines that the terms have been breached in any material way.

I should like to end though by thanking all of you for your help in making UK Biobank successful by using the data (and samples) in so many imaginative ways directed at improving human health. If you have questions about any of these points, then please do get in touch directly with a member of UK Biobank’s Access team at access@ukbiobank.ac.uk.