Abolishing anonymity: the implications of genetic sequencing technology

BY EMILY MAY ARMSTRONG · NOVEMBER 22, 2019Artwork by Jaz Hill-Valer

The world is a divisive place; there’s no doubt about that. But if there’s one thing that unites us through politics, social class, economic status, and geography, it’s our DNA: the 23 tightly coiled chromosomes sat neatly in the nucleus of almost every cell. We are 99.9% similar to every other human being on the earth and that unique 0.1% is what makes us who we are1.

Over the past 10 years, there has been a monumental rise in technologies offering gene sequencing, DNA decoding, and ancestry answers. DNA sequencing went from an insurmountable task costing billions of dollars to one as easy as spitting in a tube and waiting two weeks.

If you’ve ever thought about taking advantage of these new gene sequencing technologies, then you may have considered industry leader and Google funded 23andMe2. Cooked up in California’s Silicon Valley, 23andMe encourages users to ‘Commit to a healthier you, inspired by your genes’. It offers a £79 ancestry package, designed to help you ‘Experience your ancestry in a new way!’, or for £149, you can ‘Get an even more comprehensive understanding of your genetics’ and delve into disease-causing gene variants. 23andMe has an estimated 6 million users, and lead competitor Ancestry.com claims it has tested around 10 million people.

23andMe can give you reports on ‘wellness, health pre-dispositions, disease carrier status’ and,  rather nebulously, ‘traits’. Traits include relatively amusing propensities like ‘eye colour’ and ‘unibrow’ (look in the mirror?), ‘aversion to coriander’ (you probably knew you didn’t like it already), ‘ability to detect musical pitch’ (ask your primary school choir-master) and ‘earwax type’ (no, I don’t know either). Inconsequential traits aside, it also uses your data-rich DNA to identify family origins and identify any disease causing variants.

DNA sequencing works by shearing our DNA into bite-sized chunks and detecting the specific order of bases: A, T, G or C. Bases are the building blocks of our DNA, and the order of our bases determines how the gene functions. The order of bases in a gene sequence are aligned and compared to a reference sequence, a pre-existing genome. A genome is the complete set of genes in an organism. This sequencing can then show any variation within a gene, such as base rearrangements, base deletions, or insertions of new bases3.  23andMe only sequences the specific genes which code for the traits they’re looking for, instead of sequencing the entire genome, keeping costs down. Identifying changes in base sequences can reveal if someone has a higher chance of developing a disease. It can also identify your close family members because gene variants are inherited. By comparing a selection of genes from different family members, a family tree can be established.

This technology affords us a great scientific advantage over our genetic futures in terms of detecting and treating diseases, but it’s a double-edged sword. Multiple people have been sued by sperm cryobanks for using tests to find the sperm donors that were used to conceive their child. Doing so is a breach of many sperm bank’s anonymity clauses. Danielle Teuscher sequenced her donor-conceived daughter’s genome using 23andMe, and discovered a relative of the sperm donor. Upon making contact with the sperm donor’s relative, she began to receive cease and desist letters from Northwestern Cryobank, threatening to seek $20,000 in damages. They also revoked her access to four additional donor sperm vials, preventing her from having children that would be genetic siblings to her daughter4.

23andMe test-kit. Image Credit: Hanno Böck via Wikimedia Commons. https://hboeck.de/

A quick Google search shows many different cases of egg or sperm donor’s anonymity being breached by the data these tests are producing and the countless lawsuits that follow. These issues are raising questions about the long-term financial viability of sperm and egg donation centres. They thrived and profited off guaranteed anonymity for the donors, but due to widely available sequencing services, this is being compromised.

These events are becoming so frequent that a large charity called NPE Friends Fellowship has been created5 to support those who have discovered their presumed biological parent is actually of no relation. This is called a ‘non-parental event’, or NPE. In some cases, people are finding out their parents are adoptive, their mother is actually their aunt, or another disruption of presumed family lineage6. This understandably can be devastating to some, but revolutionary to others. Whole branches of family can be uncovered, and new, positive connections forged7

This isn’t to say that sequencing the genomes of adopted, donor-conceived, or naturally conceived children is a bad idea. Sequencing can still offer more insights into disease causing gene variants than simply doing nothing for everyone. This could give parents an idea of what their child could encounter as they grow up, from propensity to develop Alzheimer’s, to if they’ll like coriander. Importantly though, the American Food and Drug Authority actually pulled 23andMe’s ability to offer disease variant sequencing, claiming ‘the company lacked the proper approval to give people potentially life-altering information about their health.’ Their ability to offer this service in the US has been reinstated, but this level of scrutiny was never applied in the UK.

Despite diagnoses potentially saving lives, famed geneticist and author Adam Rutherford described the genetic tests supplied as nothing more than ‘trinkets’ in an interview with BBC Radio 4’s ‘Beyond Today’ podcast on the 6th of June, 20198, echoing the FDA’s previous comments. He says that these tests are extremely good at uncovering adoptive parents and finding new family members, but 23andMe’s testing kits should not be used in conjunction with diagnostic techniques within the NHS. 23andMe is a private company and are therefore “less bound by the scrutiny of public services and academic resources. We do have projects like this already…The NHS is the world leader in genetic sequencing services, and allows for an extremely valuable insight into the future of genetic technology.” He adds “The more openness and public scrutiny there is, the better.” He adds that GPs and doctors should be trained in decoding these results to ensure the highest level of genetic care can be met9.

A 24-hour Instagram poll with 63 participants (aged 20-45) uncovered how some of the public view genetic sequencing technologies. This was run by the author, on their Instagram account (@emayarmstrong, story highlight “sequencing”). Participants were from the UK, India, America, Australia, and South Africa. From this, only 32% said they would be comfortable ‘using a genetic sequencing company like 23andMe’, whereas 68% said they would not. Secondarily, 79% of responders were concerned about ‘data safety and genetic data being used for profit’. Interestingly, 20% of responders said they would still use a genetic sequencing company even if they’re concerned about anonymity and data privacy. People were concerned about ‘Private companies having access to data’, ‘the ethical implications of corporation owned personal data’, ‘risks of police and FBI accessing data’, and also said they ‘distrust the accuracy of such tests’. Equally, people were keen to underline the potential ancestral benefits of sequencing. One person found they have ‘very strong Nigerian ancestry’, but added they ‘may regret using the service in the future.’ Perhaps of most interest, people with degree-level education in a science subject were the most against sequencing their DNA.

Infographic by the author; findings from Instagram poll.

The public’s distrust of 23andMe’s genetic data collection has some weight behind it. In 2018, 23andMe partnered with pharmaceuticals giant, GlaxoSmithKline (GSK), beginning a ‘Multi-year collaboration expected to identify novel drug targets, tackle new subsets of disease and enable rapid progression of clinical programs’10. This partnership is fuelled by a $300 million investment in 23andMe from GSK. On the surface, this sounds like an excellent opportunity to create novel and tailored drugs for a variety of genetic diseases. But 23andMe users were never consulted if they could have their data passed on to third parties, nor were they allowed to opt-out of this at point of purchase. This is wrapped up in legal jargon in the terms and conditions we all blithely click through, which is legal to do. Essentially, this has flipped the customer into becoming a product. The customer pays to receive their sequencing data; the sequencing company sells their data on, creating tailored medicines. These medicines are then marketed back to the consumer who originally provided their data. 

This isn’t to say having easy-access to affordable sequencing technologies is necessarily a bad thing. In April 2018, the infamous Golden State Killer, Joseph James DeAngelo, was apprehended after 30 years because of DNA evidence. A third cousin of the brutal serial murderer and rapist uploaded their DNA to open-source ancestry service, GEDmatch11. GEDmatch lacks the data protection laws that larger companies like 23andMe have, meaning no search warrant was required by the Californian investigators, so they could match DNA from a previous crime with the relative’s genome. This was momentous for law enforcement, survivors of the Golden State Killer, and gene sequencing technologies. This also uncovered a relatively unnerving statistic: A third cousin making their genetic data publicly available makes 60% of the white American population identifiable12.

Curiously, while researching this article, I was targeted on both Instagram and Facebook by a company called ‘GenomeLink.io’ using ads. GenomeLink takes data produced by 23andMe, and runs further ‘analyses’ on the data provided. It promises to ‘curate thousands of research studies to bring you the newest insights from the frontier of genomics research.’ How it does this is entirely unknown. GenomeLink claims it can analyse ‘morningness’, ‘neuroticism’, ‘loneliness’, ‘breast size’, and ‘waist size’. I was unable to find any scientific literature to confirm these traits could be quantified using gene sequencing. Given that 23andMe only sequences specific genes that are known causes of specific traits, it would be impossible for any inferences about new traits to be made by this company. The data simply isn’t there. Furthermore, it is a shell company of a larger company called ‘awaken.co’, whose website claims it’s creating ‘an infrastructure for consumer genomics’. The ‘trusted review partners’ are all investors of the company, and the board involves people with little-to-no obvious scientific training. The aggressive marketing tactics used by this company underlines how much profit can be made through these additional services. It also demonstrates how unwitting users of 23andMe could easily be duped into handing their data over to yet another data-mining company. The company has disabled Instagram comments under their ads, probably due to a slew of disgruntled customers, reflecting the disappointment shown by customers on Facebook.

The upshot of considering all these points? Genetic sequencing is an incredibly powerful technology but needs to be used sensibly in accordance with proper data protection laws. If you submit your DNA for sequencing, you should be aware of the support networks in place if you find something life-changing – whether that’s a new family or a new genetic disease. Also,  make sure you read through those terms and conditions and opt-out of anything that makes you remotely uncomfortable. Genomic datasets are the richest available, and we need to use them wisely. As a geneticist with their own genetic disease, I highly doubt I’ll be signing up to spit in a tube any time soon.

This article was specialist edited by Rachael Burrows and copy-edited by Sonya Frazier.

References

  1. https://www.sciencedaily.com/releases/2002/12/021220080005.htm
  2. https://www.23andme.com
  3. https://www.genome.gov/about-genomics/fact-sheets/Sequencing-Human-Genome-cost
  4. https://www.cbsnews.com/news/woman-finds-sperm-donor-after-using-dna-test-raising-questions-about-donor-anonymity
  5. https://www.npefellowship.org/ 
  6. https://www.nytimes.com/2017/08/28/science/dna-tests-ancestry.html?module=inline
  7. You can read more about uncovering new family ties here https://www.theguardian.com/lifeandstyle/2018/sep/18/your-fathers-not-your-father-when-dna-tests-reveal-more-than-you-bargained-for 
  8. https://www.bbc.co.uk/programmes/p07cfghs
  9. You can find an article written by Adam for The Guardian about 23andMe here https://www.theguardian.com/commentisfree/2018/aug/10/dna-ancestry-tests-cheap-data-price-companies-23andme 
  10. https://www.gsk.com/en-gb/media/press-releases/gsk-and-23andme-sign-agreement-to-leverage-genetic-insights-for-the-development-of-novel-medicines/
  11. https://www.gedmatch.com/login1.php
  12. https://www.sciencemag.org/news/2018/10/we-will-find-you-dna-search-used-nab-golden-state-killer-can-home-about-60-white

Book Review: “SUPERIOR”, Angela Saini’s riveting takedown of the return of race science.

Emily May Armstrong reviews Angela Saini’s brand new book

BY EMILY MAY ARMSTRONG · JUNE 24, 2019

Angela Saini is my one of my favourite authors. I plunged into the descriptive and critically aware world of Inferior, Saini’s second book, over Christmas 2017, refusing to leave the house so I could finish it. I loved it; however, I was torn between the carefully crafted statistics, insightful history lessons, and the fact we needed this book at all. We shouldn’t need to have the historical misdeeds of the entire scientific community read to us, because in an ideal world, they wouldn’t have happened.

But, obviously, we don’t live in an ideal world (sorry to break it to you, everyone). And Angela Saini’s latest offering couldn’t have come at a more poignant time for us socially, economically, or politically. Her signature writing style, weaving descriptive narrative with cold-hard-facts, has morphed into compelling, almost edible prose. This should be required reading for absolutely everyone.

In ‘Superior: the return of race science’, Saini begins with her exploring the British Museum, considering the fall of previous empires. She examines how tourists long to understand their place in the world; unfortunately, doing so under ‘cold, neoclassical pillars’ instead of their home countries, where these artefacts belong. This aptly sets the tone for the deep-exploration of history, culture, and scientific racism which unfolds throughout the book.

Meeting countless historians, biologists, and experts, Saini underlines that scientifically, we may all be the same species, but it is human power structures driving wedges between us. In the first chapter, ‘Deep Time’, Saini travels to Australia. The colonialist legacy left by Europeans is still felt to this day and bred an inherent mistrust of the ‘savage other’. And science hasn’t done anything to change this. Scientific papers on ‘racial hygiene’ drove the holocaust1, while eugenics programs led to the forced sterilisation of hundreds of women of colour2. Even now, there are scientists who continue to undermine efforts to rebalance racial inequality. If you thought all science was objective, you’re wrong.

Scientific research mimics subjective views held by scientists. If we have biased scientists, we’ll inevitably end up with biased science. And this has been true for centuries – ‘modern’ science rose from Euro-centric colonialism and imperialism3, and has projected its racist ideals far and wide. Saini interviews Jonathon Marks, Professor of Anthropology at the University of North Carolina, who says that race science itself emerged ‘in the context of colonial political ideologies, of oppression and exploitation’. This was further reinforced in slavery, where ‘black diseases’ were invented to account for slaves trying to free themselves from their torturous lives in the US.

Saini deftly navigates between the origin of eugenics (believing gene variants make one inherently better than another) to a curious and shocking academic journal, Mankind Quarterly. Mankind Quarterly is still publishing fringe race science in 2019, funded by dwindling, but nevertheless nefarious sources. It received praise from US president Ronald Reagan, and publishes ‘evidence’ of ‘scientific’ discrepancies in IQ between races, amongst other shocking un-truths. This exemplifies that anything using biased scientific methods can describe itself as ‘scientific’, therefore reinforcing falsehoods about race. Race science never really went away. Instead it sits festering, driven by blinkered academics, including Mankind Quarterly’s Assistant Editor, Richard Lynn of Bristol University (Ulster University recently withdrew his emeritus professor status following a complaint that he advocates sexist and racist views).

In Chapter 6 – ‘Human Biodiversity’, the rise of easily accessible sequencing technologies is covered, considering how the now age-old race difference argument is being rinsed-and-repeated in a new, technological age. The Human Genome Diversity Project4 in 1991 set out to sequence small ‘splinter groups’ of society: Kurds, Native Americans, and the Basques. Unfortunately, Saini points out this is simply replacing ‘race’ with ‘population’, and ‘racial differences’ by ‘human variation’. It seems that even in this ‘objective’ and technologically-driven age, scientists aren’t immune to internalised racist beliefs.

Moving on,‘Caste’, the third-to-last chapter, shakes us back down to the harsh reality of India’s modern-day social stratification system; further reinforcing that race-lead discrimination still runs rampant in even the most technologically advanced countries5. It may go without saying that British colonists reinforced this system. We got to move on, India didn’t6. Children from ‘lower caste’ backgrounds have been forced to clean toilets at school, and the majority of students in the top universities are still from ‘upper castes’7. She deftly points out that differences in nutrition, education, healthcare, and stress levels directly impact a person’s ability to perform to specific tests. If you haven’t had access to a variety of positive indicators such as social class, nutrition, education, you’re not going to do as well. The better access you have to these things, the better you do in life. This has nothing to do with a person’s race, it has everything to do with systemic societal oppression.

In short, this book is timely. Recent upswings in racist, populist, and authoritarian politics has fuelled an increase in ideological white supremacists, who frequently rely on ‘race science’ to add weight to their otherwise vapid arguments. As a white geneticist from the UK, this book forced me countless times to sit with the uncomfortable history of my ancestors, and to acknowledge how my chosen subject has forced people across the world into suffering. This book is in equal parts arresting historical storytelling, and an urgent call to action. Saini urges Superior’s readers to systematically assess their racial privilege, and vigorously critique what science presents as objective truth.

Unfortunately, at the time of writing, rampant racism from the far-right on Twitter has lead Saini to make her account private. She reports, “In the last few days I’ve seen a concerted, deliberate attempt by a network of alt-righters to discredit my work. In the process, they laid their racism so bare that it utterly backfired”. If that’s not evidence that this book is timely, important, and true, then I don’t know what is.

If you would like to read any of Angela Saini’s work, she’s published by Fourth Estate. If you want to learn about the history of racism and imperialism, check out ‘Natives’ by award-winning orator, rapper, and novelist, Akala. Finally, if you want to understand the history of racism in the UK, read ‘Why I’m No Longer Talking to White People About Race’, by award-winning writer, Reni Eddo-Lodge. 

This article was edited by Katrina Wesencraft.

References

  1. https://www.fasebj.org/doi/abs/10.1096/fj.08-0202ufm
  2. http://www.pbs.org/independentlens/blog/unwanted-sterilization-and-eugenics-programs-in-the-united-states/
  3. https://www.nationalgeographic.com/culture/topics/reference/colonialism/
  4. https://www.nature.com/articles/nrg1596
  5. https://www.bbc.co.uk/news/world-asia-india-35650616
  6. http://www.historydiscussion.net/history-of-india/eighteenth-century/life-during-eighteenth-century-in-india-indian-history/6347
  7. https://www.annualreviews.org/doi/abs/10.1146/annurev-soc-071913-043303?journalCode=soc

The Cleaning Revolution: How does this new wave of ultra-cleanliness affect our health?

The Cleaning Revolution: How does this new wave of ultra-cleanliness affect our health?

BY EMILY MAY ARMSTRONG · JUNE 10, 2019

This article was originally published on the Glasgow Insight into Science and Technology’s page, as a feature. Check out www.the-gist.org for more award-winning science journalism from Scotland.

Image Credit: Eli Duke via Flickr. No Changes have been made to the original image. Licence: CC BY-SA 2.0. https://creativecommons.org/licenses/by-sa/2.0/

First, it was clean eating, then it was clean living. Now, it’s just clean… cleaning? The Instagram based “Cleanfluencing” account ‘@MrsHinchHome’ has sparked a UK-wide cleaning revolution. The internet, and specifically Instagram, is the perfect breeding ground for a new anti-germ militia, fuelled by cleanfluencers like Mrs Hinch. Whether you’ve been inspired to fold your clothes into perfect squares and chuck anything that doesn’t ‘spark joy’, thanks to Japanese guru Marie Kondo, or you’ve suddenly started bleaching your toilet daily and naming your many (different) cleaning cloths, we’re all thoroughly cleaning mad. So what does this ultra-cleanliness in our homes mean for our immune system?

The Hinch Effect

Sophie Hinchcliffe, a 28-year-old hairdresser from Essex, is better known as @MrsHinchHome on Instagram. At first glance, she is the owner of a spotless and almost entirely grey but glamorous home. Mrs Hinch is house-proud, articulate, and affable. She currently has 2.5 million followers on Instagram, is a business powerhouse, and has a book coming out imminently, titled “Hinch Yourself Happy: All The Best Cleaning Tips To Shine Your Sink And Soothe Your Soul1.

What does she do? Well, she cleans her own home religiously, films and photographs it, and shares it through social media. Through this, she’s curated her own Hinch-specific vocabulary, that you can find sprinkled throughout her posts. The ‘Hinch Army’ are her dedicated followers, a ‘#hinchhaul’ is anything you’ve bought to clean your house with, and ‘Narnia’ is the name of any (under sink) cupboard that neatly houses your multiple ‘hinch’ hauls. Dedicated followers have lauded her cleaning hacks as ‘life changing’, ‘revolutionary’, and ‘visionary’2. I personally cannot say if I have ever disinfected my doorknobs, I am unsure if I have ever used more than two cleaning products in my flat, and I seem to spend my entire life battling an endless supply of washing up. I rarely get sick, for which I partly attribute to my relatively lax approach to home cleaning. I also grew up knee-deep in mud eating worms (show me a biologist that didn’t!). But all this has got me thinking, how does this intense cleanliness change our immune system, and is it making us all sicker?

Image Credit: Alpha Stock Images – http://alphastockimages.com/ CC BY-SA 3.0

Developing a healthy immune system

The immune system is complex and ever-changing and even starts developing before birth. In the first trimester of pregnancy, maternal antibodies transfer through the placenta to the developing foetus. During early postnatal development, maternal antibodies pass through breastmilk, this exposes the infant to both crucial antibodies and maternal bacteria, helping to seed crucial digestive system microbiota and a healthy immune system. The immune system matures by gradually being exposed to a series of ‘triggers’, be that peanuts, bacteria, or dust; these are crucial to developing a robust immunity. The mature immune system is split into two broad categories: ‘innate’ and ‘adaptive’. The innate immune system is present across nearly all life forms, including plants, and responds non-specifically to any pathogenic invader. Whereas the adaptive immune system allows development of ‘immunological memory’, where immune cells retain a memory of the pathogen so it can be recognised and removed from the body more rapidly than the first time.

Our immune systems are primed and poised to launch an attack on any invading microbial species. Therefore, it might surprise you to know that there is 0.2 kg worth of bacteria in our body, and for every 1 human cell, we have 1.12 bacterial cells3. We are more bacteria than human. Our internal flora is responsible for digestion, serotonin production, and even biosynthesise Vitamin K for us. These are examples of symbiotic relationships, where two organisms have a mutually beneficial relationship. Escherichia coli (E.Coli)a very common gut bacteria, can biosynthesise vitamin K. The genus Bacteroidetes are excellent at degrading plant material, which enables us to have an omnivorous diet without the need for massively complicated digestive systems, like the one found in cows, for example.

Image Credit: Daniel Mietchen (available at https://tinyurl.com/yyo4r2zl). No Changes have been made to the original image. Licence:CC BY 2.0 https://creativecommons.org/licenses/by/2.0/deed.en

On the other hand, we are constantly bombarded by other molecules that can potentially elicit allergic reactions. Sometimes fatal, allergic reactions arise when the body launches a full-blown attack at an innocuous invader. Inflammation-causing chemicals are released, which can cause anything from rashes and runny noses to death.

So, what has any of this got to do with ‘cleanfluencers’, again?

A worrying trend is emerging. From the 1950s, rates of autoimmune diseases like type 1 diabetes, Crohn’s disease, and asthma have risen by 300%. There have also been massive increases in the rates of hayfever and food allergies. Curiously, this increase is only found in countries with very high economic indexes, and it’s not due to diet. For example, ulcerative colitis, a bowel disease, has an incidence rate twice as high in Western Europe, compared to countries which made up parts of the Soviet Union. Initially, scientists suggested that an increase in sanitation was the cause. The so-called ‘hygiene hypothesis’ suggested that pathogens activate one type of pro-inflammatory cell, causing compensatory anti-inflammatory cells. This increase was believed to cause an increase in allergies. So, the fewer bacteria you encounter, the more allergic you’re likely to be.

Unfortunately, this hypothesis fell apart when other research groups discovered parasitic and bacterial infections cause a massive increase in pro-inflammatory cells, but in some cases, caused a reduction in allergic responses. In fact, helminth (or worm) infections actually protect against the development of allergies in some animal models. This slowly degraded the link between the ‘more exposure means fewer allergies’ hypothesis, especially in non-Western countries. This is especially pertinent considering our lifestyles are actively changing and reducing microbial biodiversity in our homes and environment.

In 2003, the Rook research group floated their ‘old friends’ hypothesis4. Realising that humans evolved alongside a richly biodiverse microbial world, they considered that we are being starved of the very microbes we depend on. They suggest regular exposure to a wide range of microbes trains the immune system to respond appropriately. Put simply, a busy immune system is a happy immune system. The more stimuli the immune system remembers, the better prepared it is for any future invaders. If the stimuli aren’t there, our immune system can’t learn, and we don’t learn to separate the ‘good’ from the ‘bad’. We would possibly be compromised against allergies, asthma, eczema, and even irritable bowel disease. Equally, these illnesses can arise from genetic predisposition but mix the two together, and we have a perfect storm for ill-health.

But, this does mean that a wanton increase in the use of antibacterial hand gels, cleaning sprays, and toilet bleach is damaging our already limited availability to a wide friendly bacteria. An increase in processed food in our diets is limiting the development of our gut microbiome, whilst antibiotic overuse is also destroying what limited internal bacteria we have. All of this, in turn, leads to a generally sicker population5.

So, I don’t get it, how do cleanfluencers change our immune system?

The answer: We’re already living in a microbe-starved environment, and cleanfluencers are further encouraging this. Ultimately, this may change how our immune system functions. Research has recently shown us how not only are we too clean in the home, but environmental microbial diversity is collapsing around us. This, in turn, means our immune systems are exposed to much lower levels of ‘threat’, meaning we’re getting sicker.

Our diets, cleanliness, pollution levels, antibiotic use, parasitic infection levels, are all contributing to a massive loss of helpful bacteria. And this is bad news, as exposure to these helpful bacteria reduces our allergy and disease levels. While Mrs Hinch and her cleanliness army might be making an already existing problem worse, think twice before you disinfect your hands for the third time today.

This article was specialist edited by Kathryn McCall and copy-edited by Dzachary Zainudden.

References

  1. https://www.instagram.com/mrshinchhome/ 
  2. https://www.theguardian.com/commentisfree/2019/jan/11/cleaning-mrs-hinch-online-army
  3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991899/
  4. https://www.news-medical.net/health/Old-Friends-Hypothesis.aspx 
  5. https://theconversation.com/health-check-should-i-use-antibacterial-hand-sanitisers-21384 

Massive new study confirms higher BMI linked with serious increase in multiple diseases in the UK

In a brand-new study released today (29th April 2019), scientists from Novo Nordis have confirmed that people living in the UK who are overweight or obese are more likely to experience a wide variety of life-threatening diseases. This cutting-edge research was revealed at the 2019 European Conference on Obesity, held in Glasgow this week. 60% of the UK population are classified as overweight or obese by BMI, or body mass index1.

BMI is calculated by comparing weight to height, and is commonly used as an indicator of total body health. A ‘healthy’ range is 18-24, and BMI of over 25 is considered overweight. 30 and above is classified as ‘obese’, 35-40 is obesity class II, and 40-45, the most seriously obese group, is obesity class III2.

Researchers found that people with a BMI greater than 25 are far more likely to experience comorbid diseases, directly rising from their weight. This includes type-2 diabetes; cardiovascular difficulties such as angina, heart failure, sleep apnoea, and stroke; and certain types of cancers. 

This study used anonymous data gathered from General Practitioner’s databases (the ‘UK Clinical Practice Research Datalink’) from January 2000 to July 2018, as opposed to data from clinical trials. Clinical trials are highly selective and often have a low sample size, and frequently exclude specific members of the public, like pregnant women and those with certain illnesses. As clinical trial participation is voluntary, people involved may have a greater level of health literacy, compared to a large study like this. This study used 2.8 million anonymous people’s data to ascertain the risks between weight and disease. This sample was representative of the UK’s population, and the average age for participants was 51.

Compared with ‘healthy’ weight individuals, individuals falling into the ‘obese’ bracket are 5 times more likely to develop type 2 diabetes and sleep apnoea, and these risks are 8 and 14 fold higher in those with classes II or III obesity respectively. Class III obese individuals have triple the risk of heart failure and high blood pressure. Perhaps most shockingly, these individuals are at a 50% higher risk of dying prematurely, which is “phenomenally high”.

“Comparing BMI risk across a large number of outcomes in the same large population sample suggests that risk levels associated with BMI are different for different health outcomes. The health risks linked with having excess body weight are particularly high for type 2 diabetes and sleep apnoea”, says author Christiane Haase from Novo Nordisk, Denmark. “With the number of people living with obesity almost tripling worldwide over the past 30 years (105 million people in 1975 to 650 million in 2016), our findings have serious implications for public health. Body mass index represents an important modifiable risk factor for ameliorating the risk of a wide variety of serious health problems in the general population.”

Nick Finer of Novo Nordisk showing the group’s research efforts. Credit: Emily May Armstrong

Most importantly, the development of new disease over the course of the study was highly dependent on if the patient had any pre-existing diseases at the beginning of the study. For example, a history of heart problems doubles the risk of future heart attack, stroke, and heart failure.

The authors are keen to underline that correlation does not necessarily equal causation. If a member of the study visited their GP and had their BMI recorded, they may be experiencing illness or disease symptoms, as people in good health are less likely to visit their GP. This bias may skew the final results of the study. 

This study eclipses previous research efforts into the link between weight and disease in the UK, because of its size, scope, and detail. It will inform and steer how healthcare professionals in the UK approach obesity as a disease, allowing holistic treatment and improving patient outcomes.

This article was edited by Kirstin Leslie.

References

  1. https://www.nhs.uk/live-well/healthy-weight/bmi-calculator/
  2. https://www.cdc.gov/obesity/adult/defining.html

Objectification of Disability in 2018

My Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome mean I’m often awake at odd times of the day. My shoulders roll out, a rib slips, and I’m awake until the pain dies down. My wrist had popped out, and at 4am on Wednesday the 14th of March 2018, a little Guardian notification popped up on my phone, telling me Stephen Hawking had passed away at the age of 76. I sat, resolved in deep thought about a man who was my largest role model, for both his meteoric scientific achievements and his normalisation of disability. I realised that this was a make-or-break moment in journalism: how ableist could it possible get?

In Stephen Hawking’s death I was hoping to see a celebration of his scientific achievements; a fantastic chance for his theories to be explained accessibly to the masses. A moment to re-ignite the world’s attention and love of scientific pursuits. Instead, I ­was greeted with a barrage of ignorant, belittling, and outright rude recantations of his life.

Steven Hawking in the 1980s

For those not au fait with the term ‘abelism’, it’s much like racism or sexism: “discrimination in favour of able-bodied people.” It’s fetishization, bias, ‘inspiration porn’, bravery. It’s everything I, as a disabled woman in 2018, am profoundly against. I’m going to use the social model of disability: or ‘disabled-person’, and I believe we are disabled only by society’s responses to our bodies; not by our bodies themselves.

Disabled people are put on a pedestal. We’re rewarded for basic, and boring functioning. A disabled person, in my eyes, isn’t brave for going about their day to day lives. I am not brave for coming into work the day after a major hip dislocation and A&E visit. If anything, I’m an absolute idiot.

In the gym with my crutch, physio bands & 24 holter monitor.

Disabled people are not brave for getting up, brushing their teeth, or doing their food shopping. A disabled person is brave for running into traffic to save a cat. Or intervening in a hate-crime. Or sustaining years of medical malpractice at the hands of ignorant doctors. If you think I’m brave for remembering what day it is when I wake up, then I’d suggest you have a bit of a reality check. I was brave for persevering through 10 years of incorrect diagnoses. I am brave for standing up and calling people out on their bullshit.

Bravery leads to ‘inspiration porn’. Ever heard the phrase “The only disability in life is a bad attitude”? As Stella Young points out on her 2012 TEDX talk, “no amount of smiling at a flight of stairs has ever made it turn into a ramp.” She’s not wrong.

https://upload.wikimedia.org/wikipedia/commons/f/fa/Stella_Young.jpg

Stella Young in 2012, a disability rights activist, comedian, and journalist.

I’ve been called inspirational multiple times, in many different circumstances. I’d be much happier if people were applauding my academic prowess, my photography skills, or my progress in skateboarding. (Yes, disabled people can skateboard). Instead I’m reduced to a set of symptoms, pathologies, and hospital visits. This of course isn’t always the offenders fault, it’s years of socialisation and normalisation. Disabled people often exist within abled spaces purely to inspire hope, overcoming, and perseverance. Maybe I should look at becoming a de-motivational speaker. There are plenty of inspirational women out there;  and I’d like to join their ranks one day – but for now I’m just a woman going about her daily business trying to study.

I speak so openly about being a disabled woman in science because, well, I’m a disabled woman in science. There’s virtually none of us out there and speaking about it. We are invisible, imaginary, and crossing multiple intersections with very little for it. Disabled people, as a whole, are hidden away. How many disabled doctors, manicurists, teachers, dog walkers do you know of? Probably very few.

Why’s that? Because the society we live in prevents disabled people from achieving what they intend to do. Disabled people often end up in poverty because abled-bodied people don’t understand or believe they can be anything else but disabled. We are painted as frauds, scroungers, cheats, fakes. We are often not allowed to become productive members of society, because of abled people’s prejudice. I only fit into this ‘achievement’ narrative because I, like Stephen Hawking, was privileged enough to have access to higher education.

one of the ableist images floating around Twitter: depicting Hawking’s leaving his chair.

Disabled people’s narratives are constantly erased in favour of ‘overcoming’ their problems. It breaks my heart when I see my friends get excited that my crutches didn’t accompany me to the pub/club/social situation, “Oh! You don’t have your crutch! That’s excellent!” they proudly exclaim. What they don’t realise is that they are effectively erasing a massive part of my life. They want to see me be not disabled. They (subconsciously) believe that disability is de facto wrong, bad, and sad. And that’s not their fault, we are socialised to see disability as a big fat sad thing.

In fact, being disabled has done nothing but enrich my life. It drives me to push myself to my limits. To constantly achieve, succeed, and exceed others expectations. I have no idea who I’d be without my disability, and I have no interest in finding out.

Stephen Hawking was not “bound to his wheelchair”. You don’t call someone with glasses and “lens bound”, so why say that about another tool people use to improve their lives? His wheelchair was his freedom, just like my crutches are. Stephen Hawking did not “suffer from” ALS. He lived with it. Just like I don’t “suffer from” my Ehlers-Danlos. I live with it. What I do frequently suffer from is able bodied nonsense and a society built against me. Stephen Hawking was not “inspirational” for living his life in a way different to able-bodied narratives. He was inspirational for being a ground-breaking physicist, and dedicated voice of reason. He was also a misogynist, and there’s nothing inspirational about that.

Here’s some excellent think-pieces on how Hawking’s death has been portrayed in the media

Ace Ratcliff (a fellow EDS, POTS/DYS & MCASer) wrote this amazing article on HuffPost

Alia breaks down some of the best tweets about the matter on USAtoday

Nicole on Mashable picks apart Gal Gadot’s problematic language

Keah Brown lays down the truth on TeenVogue

Frances Ryan dissects disability discussion on The Pool