OWLS Quarterly, Seventh Edition

Oxford & Wimbledon Leading Scholarship

Edition VII: Health March 2020

The Journal of the Academic Scholars of Oxford and Wimbledon High Schools

OWLS QUARTERLY, EDITION VII, MARCH 2020 WELLCOME COLLECTION For this edition of OWLS Quarterly, the girls produced collaborative writing around ideas of health, medicine, anthropology and museums, inspired by a day at London’s Wellcome Collection. The Wellcome Collection is part of the Wellcome Trust, founded

by Sir Henry Solomon Wellcome (1853–1936). An extensive and enthusiastic traveller, Henry Wellcome

amassed a huge collection of books, paintings and objects on the theme of historical development of medicine worldwide. The writing in this edition is wide-ranging, reflecting the breadth of the Collection itself; from issues of modern healthcare and the pharmaceutical industry to societal responses to death and disease using an anthropological approach.

Editors OWLS Quarterly Ms Rachael Pallas-Brown (OHS) and Dr John Parsons (WHS)

What barriers exist in access to healthcare for disabled people........................3 The dangers and opportunities of the pharmaceutical market........................5 Revisting Genesis..............................................................................................7 How do different religious beliefs influence how death is presented in Art......8 Combatting the effects of environmental catastrophes ..................................10 Why use Zebrafish to study human diseases...................................................12 A modern outlook on the revolutionary American crowbar case...................14 Mummification across different cultures.........................................................16 Genome editing and its ramifications.............................................................18 The language of death....................................................................................20 Responses to death in Nigerian indigenous tribes...........................................22 Crspr, designer babies and Prof. Jiankui - an ethical dilemma.......................24 Designer babies ethics.....................................................................................26

WHAT BARRIERS EXIST IN

colleagues. Healthcare workers are often unaware of how their views can impact disabled people and therefore may not even recognize that this stigma exists.

However, there is little work in place to address these issues, and this needs to change. One in four people will experience a mental health problem at some point in their lives, and a similar number are physically disabled, and as such it is important that this stigma is addressed so that quality healthcare is available to everyone. Nine out of ten people with mental health problems say that stigma and discrimination have had a negative effect on their lives. This stigma stems from views that are now outdated, leading to ignorant and prejudiced ideals, which can eventually cause discrimination. Thus, it is crucial that we break the stigma so that disabled people have equal access to care.

ACCESS TO HEALTHCARE FOR DISABLED PEOPLE? Lydia Bull (WHS), Julie Chen (OHS) and Amy Simonds (WHS) 15% of the world’s population have some form of disability; either a physical or mental impairment that has a substantial and long-term negative effect on their daily life. Disability is more than a medical term but instead comprises of many social dimensions. Rates of disability are increasing because of the ageing population and more chronic health conditions, among other causes. Inequality in healthcare causes many barriers for such people including accessibility, availability of services, knowledge and skills of health workers. We focused on waiting times, stigma around disability and costs.

Scope, a national disability charity has led research into the costs faced by disabled people and their families.

Their 2019 Disability Price Tag reports show that those living with a disability face extra costs on average of £583 per month, moreover, one in five disabled people face extra costs of more than £1000 a month. While these costs can vary between different disabilities, the main costs cover specialised equipment, increased transport costs and alterations to the home. Using housing as an example of one of the many issues, you can see how cost acts as one of the most apparent barriers. There is a shortage in the adapted housing stock as there are many difficulties obtaining funding from councils for adaptations to make homes suitable for disabled people. These adaptations include lift access, elevated toilet seats and handrails. What makes these increased costs close to unbearable is the loss of income and reduced working hours; long-term stable employment is incredibly difficult to find for those with disabilities. They struggle to keep up with the costs and this means that disabled people are disproportionately living in poverty, and as such one fifth of disabled adults struggle to keep their homes warm. In addition, there have been severe cuts in disabled people’s benefits - personal independence payment (PIP) as well as employment and support allowance (ESA). These together have shrunk by almost £5 billion since 2010.

A study done by the BMJ found that the highest percentage of people having unmet needs is due to long waiting lists in the UK. This can lead to significant implications on both people with mental and physical disabilities due to health deterioration in the waiting periods for medication, appointments, referrals and more. For example, thousands of disabled children in England who need a wheelchair must wait more than four-months for equipment to be delivered. Delays like these effect rehabilitation and daily life such as attending school, and social life, therefore having significant long-term consequences. Moreover, this barrier hugely affects mental disability causing 75% of young people get worse before treatment. The Care Quality Commission found that some people in England were waiting for 18 months to get help, and as such, people are ending up unemployed, divorced or in financial distress. The NHS was built on the principle of delivering equal access to healthcare for all so should be expected to work towards greater access to healthcare as waiting times cause more strain on healthcare services in the long term due to deterioration of conditions. Inequality due to waiting time is experienced by most countries but is prevalent in the UK because of the current financial context and demand pressures the NHS faces.

Disabled people are less likely to receive the medical care that they need due to these barriers, and therefore, are unable to live in the same way as those that have full access to care. This leads to a difficult life for the disabled person, as they must focus so much of their attention into ensuring that they are on top of their health as the care is not available, and then have less time to focus on a job. In the US, 8% of disabled people are unemployed, compared to 3.7% of abled people. This means that disabled people are not able to pay for food and housing and have to lead a more challenging life.

There has always been a stigma around dealing with disabilities. Across the world disabled people experience discrimination and exclusion, which is a cause of underlying stereotypes and prejudice of different cultures. Disabled people face constant misconceptions about their dispositions and abilities and are often not treated as equals to abled people. Sometimes, the effects of this stigma are more obvious, such as outright denial of care, or are more abstract, like making people wait longer or passing them onto less experienced 3

Sources: World Health Organisation – Disability and Health (2018) British Medical Journal (BMJ) - Access to healthcare for men and women with disabilities in the UK: secondary analysis of cross-sectional data (2017) The Guardian – Disabled children waiting too long for NHS wheelchairs (2018) The Independent - Mental health waiting times mean 75% of young people get worse before treatment, report warns (2018) UK Gov – Disability stigma in developing countries (2018) BMC Medicine - Stigma in health facilities: why it matters and how we can change it (2019) Mental Health Foundation – Stigma and Discrimination Scope – Extra Costs (2019) Joseph Rowntree Foundation – Disabled people’s costs of living (2004) Disability Rights UK - Disability benefit spending reduced by £5 billion over the last decade (2018) Bureau of Labour Statistics (BLS) - Persons with a Disability: Labor Force Characteristics Summary (2019)

4

THE DANGERS AND

Government funding, using taxpayer’s money, has been a driving force in engineering many new drugs and medicines. However, many of these drugs, once ownership has been transferred to private companies, are then sold to the NHS at excessively high prices.

Some believe the UK taxpayer is effectively paying for medicines twice: initially for the development and research and then for the cost of the NHS buying the drug from the private companies. Pharmaceutical companies may argue that they provide thousands of jobs and must bear some costs of development and litigation risks. However, considering the ten figure profits they are making, one may argue that they are overpricing their drugs at the expense of the NHS and the UK taxpayer.

OPPORTUNITIES OF THE PHARMACEUTICAL MARKET Eloise Ramsden (WHS), Emma Bradshaw (OHS), Myah Kenth (OHS) The pharmaceutical industry is one of the largest growing sectors in many modern economies. It is an opportunity for medical innovation but is also an industry which is heavily regulated. In the UK, it is a leading sector, contributing £13.8 million a year to Gross Value Added to the UK, closely following the Motor Vehicle industry. The pharmaceutical industry is very lucrative and has the largest average profit margin of around 19% compared to all other industries.

In conclusion, the pharmaceutical industry has emerged as one of the most lucrative yet easily exploited industries. It is undeniable that this sector has added significant value to the UK economy, however this is partly due to exorbitant prices demanded by some companies. Even with the government’s price regulations, many argue that the prices are still extortionate, considering production costs. Some of these drugs were initially developed using government funded research and once created, were effectively sold back to the NHS at excessively high prices, which some have depicted as “daylight robbery”. Even considering the extensive research and development costs, as well as litigation risks the companies must bear, it could be said that the pharmaceutical companies are profiteering at the expense of the UK taxpayer and the NHS.

International regulatory bodies for the pharmaceutical industry include the WHO (World Health Organization), the FDA, and the MHRA (Medicines and Healthcare Products Regulatory Agency). It is important for companies in the pharmaceutical industry to follow the policies set by these organizations.

Pharmaceutical companies are heavily regulated to ensure they follow the laws of the country. For example, the Pharmaceutical Pricing Regulation Scheme controls the amount the NHS spends on medicines and helps strike the right balance between making sure the patients can get access to the medicines they need without over-supplying. The government intends to use its power to limit the price of unbranded medicines where competition in the market fails and companies charge the NHS unreasonably high prices for generic medicine. The government has the right to step in and eradicate what it describes as an unreasonable increase in price. Non-compliance or non-payment of this could result in large fines. The United States is an exception in that it does not regulate or negotiate the prices of new prescription drugs when they come onto the market.

Patient co-payments are a weak antidote, if insurance is to retain its value as financial protection. For example, assuming linear demand, if patients have insurance with a 50 percent co-insurance rate, then firms would charge drug prices twice as high as if patients were uninsured. To counteract this supplier moral hazard that applies to all insured health services, including drugs, both private and public insurers limit the prices that they will pay for all insured health services. Private sector pharmacy benefit managers (PBMs) in the United States negotiate price discounts as a condition of preferred formulary status. Public payers in other countries limit either the price the firm may charge or the amount the public payer will reimburse, or both.

The fact that a firm may launch an approved drug without price approval if it is unreimbursed confirms that price regulation of drugs is best viewed as a response to insurance. Drug price regulation differs across countries and is multidimensional in its structure and effects, making generalization hazardous. For example, some countries include a limit on aggregate annual drug spending, with a reduction in prices to offset any overshooting of target volume. Depending on the specifics of a drug price regulation scheme, it may affect drug prices, availability, utilization, R and D level and location, and factor productivity.

The pharmaceutical-biotechnology industry is a highly competitive industry. It derives from patents that are legal grants of monopoly power which enable the originator firms to reobtain their research and development. However, whilst patents provide a barrier against equivalent products for the patent’s duration, they do not stop similar products from entering the market which could potentially be therapeutic competitors. In this way, patents do not provide a rationale for the regulation of prices, nor does natural monopoly. Where the rationale for price regulation actually comes from insurance or third party payment.

This means that patients are insensitive to drug prices which leads to incentives for suppliers to charge more than they would if insurance was present.

5

Reference Pricing

Bibliography:

Although the stated purpose of therapeutic RP is to stimulate price competition, the theory and evidence suggest that -- at least as implemented in these countries - it is ineffective. Unless physicians or patients have incentives to choose cheaper drugs, the RP tends to become a floor as well as a ceiling price. Germany’s RP system was largely ineffectual until 2004, because of both weak incentives and the exclusion of new onpatent products until 2004. In the Netherlands, firms discounted extensively to pharmacists on products that the pharmacists could substitute (generics and parallel imports), but there was little impact on list prices and hence little savings to payers. In New Zealand, low prices reflect the government’s use of its monopsony power to negotiate price cuts as a condition of reimbursement, rather than market competition under RP. In sum, RP alone was ineffectual in the three countries we studied, and all three countries adopted other controls.

Brexit and medicines regulation - Parliament UKresearchbriefings.files.parliament.uk › documents › CBP-8148 › CBP-8148 https://www.abpi.org.uk/facts-and-figures/ https://efpia.eu/media/361960/efpiapharmafigures2018_v07-hq.pdf

However, if the United States were to adopt therapeutic RP, with therapeutic groups defined to include both on-patent and off-patent products, negative effects on the prices of on-patent drugs would likely be significant, because generic prices are lower in the United States than in other countries. Effects on global R and D would also be much larger, because of the large U.S. share of global sales. Thus it would be a serious mistake to extrapolate from the effects of RP in other countries to its likely effects in the United States.

It’s one of the oldest debates in economics: what’s the difference between what something costs and what it’s worth?

Regulation of market access and promotion derives from uncertainty about drug safety and efficacy. These product characteristics can only be determined from accumulated experience over large numbers of patients in carefully designed trials or observational studies.

Due to the rarity of some diseases and illnesses, pharmaceutical companies often have little incentive to produce related drugs. Drugs such as these have been coined “orphan drugs”, for the reason that they are designed to produce “orphan diseases” that few people have. Governments invest in research and development of these drugs, to aid their production.

6

REVISITING GENESIS

is constantly changing, evolving everything around it; death is no exception.

The ways in which we mourn have certainly changed.

The visceral passion of ancient mourning has given way to quieter and more contained displays of grief: mere crying as opposed to guttural shrieking and scratching one’s face. However, that is not to say that today’s mourning is necessarily more conservative.

Indeed it is true that the very sober affair that is a Christian burial is most prevalent in British society today, but more and more options are gaining traction to reflect rapidly changing social norms. It is becoming ever more popular to leave something of oneself behind, be it a digital legacy or an artefact made out of one’s own body for friends and relatives to have and to hold. What has remained constant through time is the desire to live on through memory.

Lena Dizane (WHS), Kitty Knight (OHS), Alice Politi (WHS), Eileen Vilaca (WHS) Between the classical and modern eras, customs related to burial, mourning and writing wills has changed.

There are some key similarities between ancient and modern practices, showing how some fundamental human instincts have endured over time - in both time periods bodies can be either cremated or buried, and funerals are both a way to mourn the loss of a person and to celebrate their lives. However, practices have evolved as society has changed, with Greek and Roman funerals involving bloodthirsty games and competition, compared to the more sombre occasions in modern day society. Modern mourning practices are also more varied than those of the classical era, reflecting a freer society, and customs relating to writing have changed as different things have to be passed down the generations.

Bibliography

Within Ancient Greece, mourning was a large part of the burial process. Within the mourning procedure, crying out and groaning was done by the family, this becoming particularly loud when passerbys drew near, as to attract attention, and honour the dead. This would be initially done by the family, but professional mourners would carry out this for the family. The tearing of clothes and defiling of face and hair were also practised during the mourning process. During this, songs of mourning would also be played as the body made its way. Burial practices in the classical era varied over time. From around 1100 BC, the Greeks began burying their dead in individual graves rather than group tombs. Later, a rise in simplicity of burial occurred which coincided with the rise of democracy, with Athenians beginning to cremate their dead rather than bury them. The Romans both buried and cremated their dead, though over time burying became more popular.

https://wellcomecollection.org/pages/ XFHGvRUAAAQ_pEx- accessed 9th October 2019 https://www.metmuseum.org/toah/hd/dbag/hd_ dbag.htm accessed 9th October 2019

In the digital age, however, technology allows for more and more possibilities in life, and in death. People’s possessions no longer have to be tangible, and their remains no longer have to be in an urn, or buried six feet under. In modern times, loved ones can turn to vinyl, be preserved in a jewel, or even fertilise new life in the ground after they have passed on. Of course, just as - if not more - important than where one goes to rest is what they left behind. A traditional will doesn’t cover everything in regards to this, and thus comes into play the role of a digital will. An archive of a person’s digital presence will remain even in their death, and with the increasing use of online services, the image this creates has become even more important. It is understandable that some people might wish to control what is done with their accounts, blogs, profiles, and other identities, and it serves to keep their memory alive. Technology 7

HOW DO DIFFERENT

incorporated into everyday life. Similarly, in Tibetan Buddhist rituals, young men are made to wear initiation headdresses, with skulls represented by painted gilt and leather. The skulls are symbolic to show that a Buddhist must overcome their attachment to life and subsequent fear of death in order to become free from the cycle of reincarnation. In both cases, and many others, the decorative aspects of headdresses help to incorporate skulls into ordinary garments, normalizing the concept of death, therefore supporting the salient Buddhist principle.

RELIGIOUS BELIEFS INFLUENCE HOW DEATH IS REPRESENTED IN ART? Safia Iyer (OHS), Alice McDade (WHS), Beth Warren (OHS) At the Wellcome Collection there are several artefacts which show how religion has influenced how death is represented in art. Works found in both the Medicine Man, specifically the End of Life exhibit, and the Misbehaving Bodies exhibit show the stark contrasts between how death is regarded in different religions and the media used, which differ due to varied religious standpoints, the time periods, and cultures of the artists.

In comparison, a Vanitas is a European piece of symbolic art which represents the quick succession of death from life, and the futility of life. This tradition of symbolic art is linked heavily to the book of Ecclesiastes in the Bible, showing how this one religious text plays such an important role in shaping the acceptance of 18th Century Christians towards death.

The 18th Century Vanitas wax and cloth tableau from the Medicine Man exhibit in the Wellcome Collection, depicts half a human face combined with half a human skull, demonstrating to viewers the transience of life. Its morbid appearance, of a pale white and dulled colour palette, emphasises the quick progression to death, as both sides are aesthetically similar. On the side of the skull there is a spider, insect and snail, representing the reality of the decay and abandonment of the human return to nature after death. There is also a Latin inscription on the base of the tableau reading, “Vanitas Vanitatum et omnia Vanitas” from the Biblical book of Ecclesiastes (the inscription reads, “Vanity of Vanities and all is Vanity”). This artwork was designed for European Christians of the 18th Century, to which this inscription would have been highly important, because it reminds them that life, pleasure and vanity are indeed all futile, just like in the book of Ecclesiastes where the pointlessness of human activity is a major theme, therefore reinforcing their acceptance of death.

The Buddhist ceremonial headdress, originally from Nepal, now found in the Medicine Man exhibit, demonstrates the clear influence of the Buddhist belief that death is to be embraced through its design and materials. The headdress would have been used in Secular Buddhist ceremonies and was made roughly between 1701-1900. The headdress incorporates a human skull, adorned with coloured coral beads, brown cloth and metal. This garment, as well as many other similar designs found in Nepal from the same time period, was designed to demonstrate to people that death is not something to be feared and should be 8

All three artworks draw on religion to depict death in very individual, yet similar ways. A mutual focus of the embracement of death, and how it should be accepted into our lives has been created, although it has been approached from varied viewpoints. For example, the wax Vanitas and the Buddhist ceremonial headdress both depict skulls, however, the Christian artwork is made of wax, and the Buddhist artwork is made from skeletal remains. This shows that although in the Buddhist culture they embrace use of human remains and in Christian art the remains of bodies are depicted more metaphorically, both embrace the aesthetics of death, and that it should not be feared. Two of the artworks mentioned emphasize the insignificance of life and the ensuing significance of the afterlife (or rebirth).

On the other hand, The Final Project, as an atheistic piece of work, shows an outright ending, disregarding ideas of possible immortality and nirvana, which by contrast shows the differences between religious views on death and atheistic views, shown in the medium of art.

Not only does religion affect the way death is represented in art, but the lack of religion also impacts how artists treat the subject matter of death.

Jo Spence’s aim in her collection of work, The Final Project was to create images through photography, the written word and media articles, that represented the honesty of death. This collection of work was the last thing that Jo Spence created before she passed away after suffering from leukaemia for 10 years.

Although some of her photography includes religious symbolism and theological ideas, much of her later work shows no sign of any faith. This atheistic view of the world causes her art to become very blunt, treating death as simply an end, and nothing more, which contrasts many religious beliefs of life after death. Her work includes lots of skull imagery, creating powerful and obvious statements of death, yet she also includes lots of masks in her work. The masks link to ideas of her illness and suffering not being visually obvious to those surrounding her, and that her pain and the knowledge of her impending death is hidden from the world, like a mask which hides her illness. Many of her later artworks, created by layering previous photographic films, bring to her work tranquillity and peacefulness, highlighting her slow acceptance of death. The images in which she almost appears to be floating also visually link to that of spirits and angels, with those including clouds and pale colours imitating the stereotypical view of Heaven and the Christian afterlife. Thus, her work demonstrates broader ideas about death where both religious and non-religious aspects are incorporated.

Bibliography image 1: Ceremonial headdress with a human skull, Nepal, 1701-1900 https://wellcomecollection.org/ works/ebb8hvmw [accessed on 09/10/2019] image 2: Initiation crown with skulls https://collections. dma.org/artwork/5323534 [accessed on 09/10/2019] image 3: Wax vanitas, Europe, 1701-1800 https://wellcomecollection.org/works/acux9qcx [accessed on 09/10/2019] image 4: The Final Project [Mask 4], 1991 – 1992, Jo Spence https://www.richardsaltoun.com/artists/36jo-spence/works/13924-jo-spence-the-final-projectmask-4/ [accessed on 09/10/2019] image 5: The Final Project [‘End Picture’ Floating], 1991—1992, Jo Spence https://www.richardsaltoun. com/artists/36-jo-spence/works/13936-jo-spence-thefinal-project-end-picture-floating-1991-1992/ [accessed on 09/10/2019] 9

COMBATTING THE EFFECTS

it a highly vulnerable target for the hurricane to strike in - although there is never a good time for a disastrous storm to strike the country, this had a larger impact on it than expected.

OF ENVIRONMENTAL CATASTROPHES

Food security remained a concern as the country struggled with the impact of multiple hurricanes and natural disasters hitting it in the space of 3 months, as well as drought. 2 million people were at risk of malnutrition since more than 70% of crops were destroyed in the south of the country. This food insecurity impacted many in Haiti, however it would not be a concern in America due to their contrasting levels of development. Whilst America has the economic resources to import food in times of need, low income developing countries such as Haiti cannot; instead they face life threatening resource scarcity.

Sophia Akbar (OHS), Amy Brooks (WHS), Alexandra Abbate (WHS) Natural disasters carve our world and shape the development of countries globally, exacerbated in this era when the climate crisis is at the forefront of our minds and driving societal change.

The USA was also affected by Hurricane Sandy, experiencing disruptive and devastating effects including flooding, coastal surges and blizzards.

Economic disruption was caused as people were unable to work and infrastructure was partially destroyed.

However, the Federal government was quick to step in, and invested $787 million for Hurricane Sandy recovery to restore shorelines and encourage local efforts to protect communities from future hazards.

Furthermore, the Subway network in New York was up and running within 3 days after being flooded, allowing commuters to regain a sense of normality.

More than $2.4 billion in low-interest loans was given to individuals and businesses.

Although it was the same storm, its impact seems to have played out in two different worlds. While reports that electricity was slowly being restored in New York came out, villages in Haiti questioned having electricity to begin with. This stark contrast directly highlights the difference between recovery in possibly two of the most divergent countries in terms of economic development. Haiti is the poorest country in the Western Hemisphere. 80% of residents live in poverty, in contrast to 10.8% in Connecticut, an American state affected by the storm surge in particular. Haiti’s mass destruction from the 2010 earthquake further shows how liable less economically developed countries are to natural disaster impacts. In the immediate aftermath of the earthquake, over 500,000 lived in tent cities around Port-au-Prince alone, and refugees were provided with a crucial minimum of food and physical security. In general, AC’s such as the US in this instance, recover from natural disasters efficiently. LIDCs like Haiti are far more reliant on foreign aid, and the impacts are vastly more destructive.

Natural disasters such as floods and hurricanes can have devastating impacts ranging from social disruption individually to a country’s economic growth and development for centuries to follow. This series of pictures collected by Adam Chodzko, depict a variety of natural disasters, illustrating how everybody is connected to these catastrophes that plague our modern world.

In an age of genetic modification and robotic engineering, you might think that natural disasters were a problem of the past, however 2012’s Hurricane Sandy proved otherwise. Named as the deadliest, most destructive and strongest hurricane of 2012, Hurricane Sandy inflicted $70 billion worth of damage, accumulating America’s highest costing hurricane on record at the time.

Hurricane Sandy affected multiple countries in the West, including Cuba and Haiti. The storm killed 52 Haitians, flooded much of the country’s south, and displaced over 18,000 families. Up to 400,000 Haitians were still living in camps for those left homeless by the country’s devastating 2010 earthquake at the time.

Haiti’s long term political instability at the time made 10

Bibliography: https://obamawhitehouse.archives.gov/ blog/2013/10/28/hurricane-sandy-recovery-effortsone-year-later https://www.aquafinance.com/resource-center/ news-articles/how-3-different-natural-disasters-affectgroundwater-quality/ https://www.livescience.com/40774-hurricane-sandy-simpact-infographic.html https://www.theatlantic.com/photo/2012/11/ hurricane-sandy-the-long-recovery/100405/ http://www.alliewist.com/Recipe-for-Potable-Water

https://www.undp.org/content/undp/en/home/ presscenter/articles/2012/11/02/hurricane-sandykills-around-80-in-the-caribbean-1-8-million-affectedin-haiti.html

Simple technologies, such as this ‘Recipe for Potable Water’, can be adopted by LICs who are less able to cope with issues caused by disasters. Typically, environmental catastrophes disrupt and contaminate vital water sources. Bacteria that originates from sewage systems contaminate the water, uncontrollably spreading disease, meaning that victims of these disasters need an immediate solution. As shown in the image, household items and a chunk of asphalt, which have been taken from a location affected by Hurricane Sandy, form a simple desalination device.

This DIY technology would have massively benefited the Haitians, as 7500 died from an outbreak of cholera caused by contaminated water. This device would have meant that they could have desalinated seawater in order to drink it. The outer bowl contains salty water that evaporates, condensing on the clingfilm and allowing pure water to form in the central bowl.

http://edition.cnn.com/2010/WORLD/ americas/01/12/haiti.facts/index.html https://www.theguardian.com/world/2012/nov/02/ aftermath-hurricane-sandy-haiti-disaster

This innovative item has the potential to stop waterrelated deaths, and it is inspiring as it uses rubble from disasters of the past to positively influence the future and encourage the survival of those affected by natural disasters.

11

WHY USE ZEBRAFISH TO

AD is a physical, degenerative disease that causes chronic inflammation in the brain. The disease is caused by the formation of excessive deposits of the proteins amyloid beta-peptide and tau inside and around cells within the brain. These protein deposits block the pathway of neurotransmitters between neurons and, as a result, also prevent the passing of messages between neurons. It has also been shown that in the brain of those suffering from AD, the number of neurons decrease with the progression of the disease.

Recent studies suggest that the reason for this might be that AD prevents neurogenesis, i.e. stops the brain from producing new neurons. However, other scientists disagree and maintain that there is no sufficient evidence for the existence of neuron development in the human brain post toddlerhood.

STUDY HUMAN DISEASES? May Lee (OHS), Izabella Polgar-Wiseman (WHS), Millie Yates (WHS) The use of zebrafish in scientific research has evolved since the 1960s because 84% of disease related genes in humans are similar to genes found in the zebrafish genome. Therefore, they can be used as a model to explore treatment in human diseases, such as muscular dystrophy, neurodegenerative and congenital diseases.

Muscular dystrophy is a group of muscular diseases that causes the weakening and breakdown of skeletal muscles over time, which can lead to loss of movement.

The human disease Duchenne muscular dystrophy is caused by mutations to the DMD gene. This is the largest known human gene which provides instructions for the formation of the protein dystrophin, located mainly in muscles and used for movement in the skeletal muscles and in the cardiac muscle. When this error in the genetic instructions occurs, cells cannot make the protein dystrophin, therefore the associated muscles cannot work properly.

Meanwhile, strong resemblance in neurological behaviour has been discovered between humans and zebrafish, which include neuroanatomical, neurochemical, behavioural as well as pathophysiological similarities.

However, unlike mammals, zebrafish also have a unique ability to regenerate their neurons in their adulthood, producing 12,000 new cells per hour. These cells are formed in around 16 proliferating regions within the brain of adult zebrafish. In 2014, a team of scientists studying zebrafish discovered a previously unknown regulatory process for the development of nerve cells.

This research has prompted significant interest, since it has the potential to aid in the understanding of how zebrafish can restore lost neurons, and eventually apply this knowledge to modulate the behaviour of cells in the injured human brain.

Dystrophin is also necessary to form stable muscle attachments in the zebrafish embryo. In both humans and the zebrafish model, the loss of dystrophin gradually causes muscle cells to become damaged and, in time, they are replaced by scar tissue and fat in a process called fibrosis. The decline of the dystrophin gene is very similar in zebrafish and humans and in both cases leads to the progression of muscular dystrophy. In both organisms, over time, the loss of dystrophin leads to necrotic muscle fibres, which have been irreversibly damaged by abnormal cell death.

These are then supplanted by inflammatory cells (those that enter tissue during inflammation), fibrosis, and irregularly sized muscle fibres. Titin, also known as connectin, is another protein, the largest known protein in humans, which is responsible for the passive elasticity of muscle. It is coded for by the TTN gene. Studies of the zebrafish genome have suggested that they contain two adjacent TTN genes, so we also have the muscular protein titin in common with them. Scientists can alter the genetic code of zebrafish to replicate health conditions, which has helped them to understand developmental impairments in humans, as well as many other diseases and infections. Therefore, the zebrafish has appeared as an auspicious organism to help with the study of vertebrate muscle development and disease and research into treatments and cures.

Zebrafish therefore present some unique characteristics that make them ideal candidates for not only modelling neurological diseases of the human brain, such as AD, but also for the study of neurodevelopment, as well as pharmacological screening of new drugs.

Moreover, using zebrafish, we can find out the genes that are responsible for a phenotypic trait which embryo zebrafish inherit from their parents. Traits include physical features, for example, pigmentation, size, shape or physiological characteristics like a heartbeat or food metabolism. Behavioural studies have also been carried out on aggressiveness, sensory perception and even cocaine addiction. Zebrafish are very suitable organisms for genetic analysis as they can produce thousands of varieties of offspring in a short length of time.

Traits can be mapped to a gene by first matching the phenotype with a known genetic polymorphism. This is a difference in a specific region of DNA sequence in the chromosomes of different embryos that can be used to distinguish the gene responsible for a trait. For example, the gene responsible for a curly tail can be identified:

Dementia is a syndrome, which describes different neurological disorders that cause a progressive decline in cognitive ability. Although there are over 200 types of dementia, Alzheimer’s disease (AD) is the most common form to be diagnosed in the UK.

Can you find a difference in the genotype of a curly tail that is not present in the genotypes of wild type embryos?

12

You may have discovered that the A allele is not present in the genotype for a curly tail. Therefore, this shows that the curly tail gene maps to the chromosomal region neighbouring the A/a polymorphism. This helps locate the gene responsible.

If the particular polymorphism is always identified with a phenotypic trait, it suggests that the trait gene neighbours the polymorphism. Fine mapping is particularly successful with zebrafish rather than with for example other models such as mice as a great number of offspring are able to be tested.

However, they become more important in helping identify genes responsible for congenital abnormalities in human embryos for example heart and craniofacial abnormalities. Phenotype variation is induced by natural mutations with the cases looked at so far.

However, in order to observe a big phenotypic difference, a mutagen such as ethylnitrosourea (ENU) is used on zebrafish which increases errors during DNA synthesis to cause mutations, increasing mutation rate.

The embryos of treated zebrafish are then screened for any abnormalities. They are examined for deformities with a microscope or changed patterns of gene expression. As a result, these screens (mutagenesis-based screens) have enabled the identification of hundreds of genes that are essential for normal development of vertebrate embryos. Identifying the genes contributing to abnormalities can enable carriers to take genetic tests and receive early diagnosis and therapy.

Sources: https://www.nature.com/articles/s41420-018-0109-7 http://zebrafishucl.org https://wellcome.ac.uk/news/zebrafish-genome-yieldssignificant-similarity-human-genome https://irp.nih.gov/blog/post/2016/08/why-usezebrafish-to-study-human-diseases https://www.yourgenome.org/facts/why-use-thezebrafish-in-research https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC3470424/

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A MODERN OUTLOOK ON

diameter.” Simply on the basis of vocabulary, we can understand that there was comprehension of the parts of the brain, the surface had been mapped out, but the actual responsibilities of these parts and the effect of any damage on general human functioning, was extremely limited.

THE REVOLUTIONARY AMERICAN CROWBAR CASE Lizzy Brown (WHS), Ella Loizou (WHS), Prashanti Sen (OHS)

With William’s assistance Harlow proceeded to remove Gage’s hair, coagulated blood, small bone fragments and ‘an ounce or more’ of protruding brain from the exit wound. Surgery was performed to replace two large pieces of dislodged bone and the wound was held together with adhesive straps to allow fluids to drain, as the brain swelling reduced gradually. From a modern medical standpoint, this procedure was outstanding, as the fundamental principles that were used then, are still carried out today, but with improved safety, use of higher surgically graded equipment and advanced technology.

The discovery of antibiotics in 1928 for example, was eighty years too late for Gage, whose death from an epileptic seizure was caused by a severe wound infection.

Often medical afflictions experienced in the past play a vital role in opening the eyes of the modern day thus helping to advance our current understanding of human physiology. For hundreds of years doctors have been fascinated by the brain, the centre of our existence which controls all that we do. However, that awe of the three pound, soft mass inside our cranium was not at all understood until Phineas Gage was rendered ‘one gore of blood.’ an accidents with repercussions that inspired and gave doctors clues to solving the enigma of the brain.

On September 13th 1848, near Cavendish, Vermont, Phineas Gage was paving the way for the construction of a new railroad when a distraction caused a tamping iron rod, measuring over 1 metre in length, to pierce through his upper jaw, underneath his left eye, then through the frontal, temporal lobe before landing 25 metres away. Given the extent of the trauma, one might have expected Gage to have suffered more severe repercussions than he did, especially with regard to his motor skills and mobility. He did suffer severe loss of blood and blindness in the left eye, but, for the most part, his physical capacity remained intact, hence the most severe consequence was the subsequent immense shift in his personality.

Given the lack of physical change to the body, many neuroscientists, psychologists and behavioural analysts have since remained fascinated by the switch in his personality. Very little is known about Gage’s behaviour prior to the explosion, but accounts from his peers and doctors indicate an acute shift. Gage was described by those around after the accident as lacking in inhibitions, with later embellished claims saying that he became “beset by drinking habits” (Wilson, 1879), “intemperate” (Hughes, 1897), and finally a “braggart”, ‘the decisions he made did not take into account his best interest”, and that “there was no evidence of his concern about his future, no sign of forethought” (Damasio, 1995).

He also seemed to present a strong affiliation with the tamping iron itself, which he kept as he travelled around having been deemed unfit to continue working on the construction. To those around him, it was coined his ‘constant companion.’

In the immediate aftermath of the event, Gage sought the advice of Dr Edward H. Williams who, upon the first consultation, declared disbelief that an iron bar of such length and girth could have caused such a wound. Gage, in spite of his injuries, was still able to walk, communicate and seek medical attention without assistance, despite others’ descriptions of seeing “the pulsations of the brain being very distinct.” and upon vomiting watched as “about half a teacupful of the brain, fell upon the floor.” Although Williams was the first physician to observe the injuries obtained by Gage, the case was then transferred to Dr John Martyn Harlow

These reports however, all lead to one conclusion that has been pointed out by many, which is the oftenblurry boundary between science and popular scientific myth. The inconsistency and questionable reliability of sources leads us to wonder what truly happened in the mind of Phineas Gage and how much we can learn from his accident. His brain injury galvanised the drive of functional mapping of the brain and directly led to the temporal lobes association with cognitive skills, emotional expression and behaviour, but the extent to which is still unknown.

Harlow’s account of the passage of the rod was described in a letter to the Boston Medical and Surgical Journal which allows us to understand the depth of nineteenth century medical knowledge. “[The tamping iron] entered the cranium, passing through the anterior left lobe of the cerebrum, and made its exit in the medial line, at the junction of the coronal and sagittal sutures, lacerating the longitudinal sinus, fracturing the parietal and frontal bones extensively, breaking up considerable portions of the brain, and protruding the globe of the left eye from its socket, by nearly half its

Henry Wellcome set up the Wellcome Trust an archive of his research and collections throughout his life and an ever expanding library of medical knowledge.

The history of Phineas Gage lies in the archives of neuropsychology, but, similarly to the Wellcome Trust, his story has provided the platform upon which advancements in medicine have, and continue to be made.

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Bibliography Harlow, J. (Dec. 13th 1848). Passage of an Iron Rod through the head. Boston Medical and Surgical Journey 1848, Volume XXXIX No. 20 Barton, M. (Nov. 2nd 2018) “The Frontal Lobe of Phineas Gage”<https://www.pastmedicalhistory.co.uk/ the-frontal-lobe-of-phineas-gage/> Cherry, K. (Nov. 6th 2019). “Phineas Gage’s Astonishing Brain Injury <https://www.verywellmind. com/phineas-gage-2795244> Constandi, M. (Nov. 8th 2010, Guardian ). Phineas Gage and the effect of an iron bar through the head on personality https://www.theguardian.com/science/ blog/2010/nov/05/phineas-gage-head-personality

15

MUMMIFICATION ACROSS

In addition, the Chinese ensured bacteria would not decompose the corpse. They packed clothing densely inside the coffins, to ensure there was little oxygen so bacteria were unable to reproduce and died, and the lime from the mixture was bactericidal which prevented the growth of bacteria. The clothing also meant that the bodily fluids from the corpse would have absorbed into the clothing and moisture absorbents, such as charcoal, were put into the coffins too. These actions both ensured there was less moisture which was needed to mummify, as the body needs the opposite conditions for decomposition, therefore, the lack of moisture means less digestive enzymes, released from lysosomes in cells after death, will be breaking down the cells in the body because they need water to survive.

DIFFERENT CULTURES Flora Becker (OHS), Tanika Brandaro (OHS), Vera Kjellberg (WHS) While many associate the origins of mummification with the Ancient Egyptians, the tradition was almost certainly born in South America. The rightful owners of the title for the oldest practitioners of mummification are believed to be the Chinchorro people of modern-day Chile.

Approximately 2000 years before the Egyptians began mummifying their dead, the Chinchorro people were developing the art of mummification in response to an increasing population – and thus an increasing population of corpses to handle. The extremely arid climate of the Atacama Desert meant that corpses would naturally mummify, so it was only natural that the Chinchorro people would begin purposefully mummifying their deceased. This was done in a nondiscriminatory practice: all ages and social classes had the opportunity to be mummified after death. Perhaps this mass-scale mummification allowed a pre-literate society to develop five distinct forms of mummification.

The most significant two, however, are ‘red’ and ‘black’ mummies.

Egyptians began to wrap their dead in linen around 3400BC, but they only started to remove organs and treat the body with resin and oil in around 2600BC, becoming one of the greatest specialists in mummification.

The Egyptians mummified their dead due to their beliefs surrounding the afterlife. They believed that all of the parts of the body formed a whole, which was the earthly home for the three parts of the soul, the Ka, Ba and Akh. The Ka was responsible for the part of the soul that existed in the living realm and the Akh existed in the underworld, whereas the Ba could travel between both realms. These three parts all relied on the good condition of the body to work effectively in the afterlife, as the body provided a constant home for them.

To create a ‘black’ mummy, one would take apart, treat, and reassemble the entire body. If a ‘red’ mummy were desired, small incisions would be made into the body so that the internal organs could be removed. Both types were stuffed with sticks to replace the lost organs before being decorated with wigs, coloured clay, and jewellery.

The bodies were typically mummified in a sitting foetal position with the knees drawn towards the chin and the hands towards the face. After seeing such a mummy at a museum in Paris whose jaw had fallen open, Edvard Munch was inspired to create his well-known painting, ‘The Scream’.

During the process of Egyptian mummification, in a version for the more wealthy, the brain was normally removed through the nose, while the rest of the body was hollowed out, dried using natron, then treated with oils and resins. The organs removed were then placed in their four associated Canopic Jars, the liver in the Imset jar, the lungs in the Hapi jar, the stomach in the Duamutef jar, and the intestines in the Kebechsenef jar. However, the heart was not removed as they believed it was needed when the deceased entered the Hall of Judgement. Beauticians then restored a lifelike appearance to the body, which was then wrapped in metres of linen and covered with an array of protective amulets, before being placed in a highly decorative coffin. A detailed funeral was then held to reactivate the soul within the body.

China had an advanced and effective mummification process, focusing partly on the concealment of the body rather than the mummification process itself to preserve. For example, mummies found dating back to the Song (960–1279 A.D.) and Ming (1368–1644 A.D.) dynasties were found in graves which had a unique structure to them called sticky rice paste (or soup) sealed tombs which were made up of lime soil mixture. To make this, the Chinese blended a mixture of lime, yellow clay soil, sand, and sticky rice water proportionately and once it hardened it completely sealed the grave, which protected the mummy from outside threats such as bacteria, fungi and animals.

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Bibliography Mummification in Korea and China: Mawangdui, Song, Ming and Joseon Dynasty Mummies. Biomed Research International Chong Seak Oh, In Uk Kong, Jong Ha Hong, Sergey Slepchenko, Jun Bum Park, Dong Hoon Shin. (2017).

Tracing the Historical Origin of Joseon Mummies Considering the Structural Similarities between the Burial Systems of Korean and Chinese Dynasties.

Seoul National University College of Medicine Ancient History In Depth: Mummies Around the World - Dr Joann Fletcher (2011) Discovering Egypt - Egyptian Mummification - Mark Millmore Chatterjee, Rhitu. “Why the South American Chinchorro People Made the First Mummies.” Public Radio International, 13 Aug. 2012 Johanson, Mark. “Oldest Mummies Found in Driest Place on Earth.” CNN, Cable News Network, 1 May 2019 Fletcher, Dr Joann. “History - Ancient History in Depth: Mummies Around the World.” BBC, BBC, 17 Feb. 2011

17

GENOME EDITING AND ITS

genes of algae to make them produce large quantities of fat for use as biofuels, which could replace current fuels like coal.

RAMIFICATIONS

It may eventually be possible to bring extinct species back using CRISPR. While this hasn’t yet been done successfully, there are projects in the works attempting to recreate species like the passenger pigeon and the woolly mammoth.

Anna Bayly (WHS), Kitty Joyce (OHS), Veronica Ojereliev (WHS) Genome editing techniques have existed for decades. In 1973 the first transgenic organism was created by inserting antibiotic resistance genes into Escherichia coli. Since then similar methods have been implemented in animals. In 2018 He Jiankui announced that he had edited the genomes of two human embryos; he attempted to disable the CCR5 gene, which codes for a receptor that enables HIV to enter cells.

While genetic engineering can be beneficial, using it on humans has severe ethical ramifications. The most obvious is the possibility of creating ‘designer babies’ - children engineered to be stronger, faster or more intelligent, or look a certain way. This could result in certain traits being eliminated if they are considered undesirable. Similarly, the concept of removing genes that cause disabilities is controversial, since there are differing interpretations of what constitutes a ‘bad’ gene.

Genome editing is a group of technologies which enable scientists to change an organism’s DNA. The most recent approach is known as CRISPR-Cas9. This system was adapted from a naturally occurring genome editing system in bacteria. The bacteria capture snippets of DNA from invading viruses and uses them to create DNA segments known as CRISPR arrays.

These arrays allow the bacteria to identify the viruses if they attack again; if this occurs, the bacteria produce RNA segments from the CRISPR arrays to target the viruses’ DNA. The enzyme Cas9 is then used to cut the virus’ DNA apart, destroying it.

Another issue with genetic engineering in humans is that we do not know enough about the potential consequences. As genetic engineering is a relatively new technology, there is little long-term data showing the effects of genetic modifications, so we cannot predict whether these modifications will have unexpected side effects. CRISPR functions by sending restriction enzymes into cells to cut certain genes out of the DNA. However, these enzymes may cut the DNA in other places, resulting in additional damage that goes unnoticed during the procedure.

This can be replicated in a lab. Researchers can create a small chain of RNA with a sequence that binds to a target sequence of DNA in the genome. The RNA also binds to the cas9 enzyme. The modified RNA recognizes the DNA sequence, and the cas9 cuts the DNA at that location. Once cut, researchers use the cell’s DNA “repair machinery” to add or delete genetic material or change the DNA by replacing an existing segment with a customized DNA sequence.

Additionally, gene therapy, where diseases are treated with gene injections, could lead to gene doping, where athletes use gene injections to enhance their sporting abilities, like how performance-enhancing drugs are used currently. This is currently undetectable, although it is not safe for use yet either. Overall genetic engineering has many ethically dubious applications, though most are not yet possible, and could prove to be very dangerous in the future.

Although genetic engineering isn’t yet used in humans, it has several potential applications. It could be used to prevent genetic diseases, and (as mentioned above) an attempt has already been made to prevent HIV, although we haven’t yet seen if this provides any clinical benefit or has side effects (there is some evidence that removing the CCR5 gene can boost memory and intelligence). Another use for CRISPR gene editing is making stem cells ‘invisible’ to the body’s immune system, which prevents stem cell transplants being rejected.

CRISPR has applications in other organisms too. We can alter the genomes of crops to make them suit our needs: they can be made resistant to herbicides, their ripening can be slowed so they are fresher when they reach consumers, or they can be made larger. Foods can be altered to remove allergens: for example, wheat could be made without gluten so gluten-intolerant people could eat it. We may soon be able to edit the 18

Bibliography https://www.future-science.com/doi/full/10.2144/ btn-2019-0056 https://en.wikipedia.org/wiki/Genetically_modified_ organism#Humans https://www.ncbi.nlm.nih.gov/pubmed/27500183 https://www.ucsf.edu/news/2019/02/413311/crisprgene-editing-makes-stem-cells-invisible-immune-system https://www.hindawi.com/journals/ ijg/2019/8458263/ https://www.nature.com/articles/s41438-019-0159-x https://sciencing.com/ethics-of-geneticengineering-13718449.html https://www.nature.com/scitable/topicpage/geneticinequality-human-genetic-engineering-768/ https://www.livescience.com/64166-first-geneticallymodified-babies-risks.html https://journals.plos.org/plosbiology/ article?id=10.1371/journal.pbio.3000224 https://www.sciencemag.org/news/2019/08/didcrispr-help-or-harm-first-ever-gene-edited-babies

19

THE LANGUAGE OF DEATH

believe that there is a place after death, (in this case hell according to catholic beliefs). As well as this, the Germans have a phrase, “Edel, arm oder reich, der Tod macht alle gleich” which means that nobility, poor and the wealthy are all equal after death, which could refer to the catholic view of heaven. However the more obvious meaning would be to say that death is the end, and when it comes, so does a final sense of peace and equality (Unlike what the Chinese language implies, which continues differentiation after)

Olivia Keene (OHS), Marina Lowe (WHS), Siobhan Williams (OHS) In English, there are numerous popular metaphors for the experience of death. Most of these are a type of metaphor called frozen metaphor meaning a metaphor which has less obvious non-literal meanings due to the frequency with which they are used in everyday life.

Examples of these in relation to death are the phrases “pass away” or “pass on.” Many English metaphors for death include a suggestion of there being an alternate place or realm belonging to death. This idea of death as a physical place can be seen in phrases like “went on to his reward” and can be seen in lots of other languages’ metaphors for death. However, there are other types of English metaphors for death. Some are quite inexplicable, for example “pushing up the daisies” and “kicked the bucket” don’t make a whole lot of sense literally yet we know what they mean in context - that someone has died. This is an interesting feature of metaphors for death that can be seen across the languages we’ve looked at. In many cultures, it seems, people want to have a plentiful supply of euphemisms for death. We are hesitant to discuss death literally so there is a need for slightly nonsensical metaphors like these in societies to allow any discussion of death to take place.

Like English and other European languages, German has some frozen metaphors, (such as “In Gras beißen”, meaning ‘to bite the grass’, similar to ‘to bite the dust’) Germans also use the metaphor, “Den Löffel abgeben” which means ‘to give away the spoon’, which most likely refers to the spoon being a medieval symbol for one’s right to alimentation, which implies that after death, one does no longer need the necessities of life, and that perhaps there is no ‘life’ or other place after death.

Therefore, although there is some reference in German sayings to a place after death, there is also quite a lot which implies that death is the end, and ⅔ of Germans share this viewpoint.

Whether or not the belief remains widely spread in modern day China, traditionally, there was an idea that your ancestors are present in your life to some extent.

There was a view of them as silent benefactors whom you could call upon for help or counsel. This, therefore, creates a basis for some Chinese metaphors for death as an alternate realm or place just like the other languages we’ve taken a look at. For example (sheng tian) meaning rise to heaven and (qu huang quan) meaning to go to the yellow spring. There is also an idea of moving to a distinct physical place in the phrases (rù míngshì) - ‘to enter the dark room’ and (li kai wo men) - ‘to leave us’.

Further similarities with other languages include the role of absurd or nonsensical metaphors for death for example (Qù zuo mài xián yādàn) - a cantonese phrase meaning ‘has gone to sell salty duck eggs’. In addition, there is a suspiciously similar phrase in chinese to the English “meet your maker” in (jian ma ke si) - to meet Karl Marx in reference to Karl Marx as the father of communism.

Within French metaphors surrounding death, there is an emphasis on relief from life as well as the idea of a place for the dead. The metaphor ‘Manger les pissenlits par la racine’ meaning ‘to eat dandelions by the roots’ implies that the person is now resting in a new location. This place can be assumed to be ‘hell’ due to the Catholic views that 47.4% of French people share.

However, this idea of a place is not referred to otherwise, unlike the idea of relief. This is hinted at in the phrase ‘N’avoir plus mal aux dents’ meaning ‘to have no more toothache’. This implies that death is seen as relief from pain (and therefore that life is far more laborious than the afterlife) and so, death is good. This can be supported by the fatalist approach that many traditional rural areas have towards death, implying a lack of fear towards it. Moreover, the phrase ‘Fermer son parapluie’ meaning ‘to close one’s umbrella’ could be interpreted as meaning that said umbrella is no longer necessary due to the ceasing of the rain which further suggests this lack of fear and almost a willingness towards it. Although, it could be interpreted as pain as they no longer are protected, linking again to the Catholic view of hell.

However, one of the things about the language of death that is unique to Chinese is the fact that Mandarin has many different verbs for the death of different types of people. If you are a person of normal status or rank than the correct verb is (si) for ‘to die’. However, if you are referring to the death of a king or emperor then the verb you are looking for is (jia beng). For a prince you want (hong) and for a scholarly official (zu). There are also different verbs for different ages and for different ways of dying for example (xun guo) means to die for country and (xun qing) means to die for love. One last point about the language of death in Chinese is that the superstition of the number four being unlucky is caused by its being a homophone of the verb (si) - to die

In German, there are some phrases which refer and imply that they believe in a place after death, but gives no explicit place. For example, one of the metaphors used in the German language is: ‘Das Gras von unten betrachten’, which translates to ‘to look at the grass from below’. This heavily suggests that the Germans

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from above. As a result, some Chinese people will go to extreme lengths to prevent coming into contact with the number four in their lives. For example, it is very rare to find buildings with floor numbers that include the number four; floor 13 tends to skip straight into floor 15. The fear of the number four has even been given the name, tetraphobia. In this instance, it can be seen just how hesitant we are as people to talk openly about death that not only do we need to have the discussion through euphemisms and metaphors like those that we’ve discussed in this piece but we also shy away from merely the sound of death itself and avoid being reminded of it at all costs.

21

RESPONSES TO DEATH IN

At the wake, the bereaved family welcome the community with kola nuts and palm wine. Prayers are spoken to beckon ancestral spirits to escort the deceased.

Gunshots early the next morning alert the village of the death, and end the wake. The Igbo usually bury their dead in the living room of the deceased’s home along with cloth and the deceased’s most valued possessions.

NIGERIAN INDIGENOUS TRIBES Lauren Hughes (WHS), Sophia Martin (WHS), Caitlin Tambini (OHS)

The final funeral often occurs months or even years after the first, due to expense, and is more lavish and optimistic than previous events. It is known as ‘Ikwa Ozu’, ‘celebrating the dead’, and without it, the deceased cannot take up their proper place among their ancestors. One of the rites of the ‘Ikwa Ozu’ is the ‘Ino uno akwa’, when someone known as an ‘ada’ silently eats the deceased’s favourite foods all day to ensure they have food in their new world. Typically all immediate relatives of the deceased dress the same at an Igbo funeral, and each group brings dancers to entertain the crowds. Family and friends join in dancing.

While looking through the Wellcome collection, we came across two Ibeji figures, made of carved wood, and intended to represent the souls of deceased twin children. They were from the Yoruba culture, in which twins are thought to share a soul. This is why, if one twin dies in infancy, the family will continue to care for their figure, by bathing and clothing it, as a way of caring for their soul. This sparked an interest in responses to death more generally in the three main indigenous tribes in Nigeria; Yoruba, Igbo and Hausa.

The Yoruba tribe The Yoruba believe, similarly to the Igbo tribe, that death is an opportunity to change from one state of existence to another. The favoured funeral (given to everyone who dies of old age) is called Isinku. It involves seven days of rituals (etutu), to successfully deliver the spirit to the next realm; usually with the expectation that the spirit will return to the body of a newborn child.

There are several death rituals observed by the Yoruba tribe in the past and present. They are pragmatic in understanding that some die young, but emphasis is placed on the quality of life and its impact; ‘if we die young, and a horse is killed in celebration of one’s life; it is better than dying old without people killing even a chicken in celebration’. One example of a Yoruba death ritual is one whereby a widow drinks the water used to clean her husband’s corpse, to prove that she had nothing to do with the death. Refusal to partake in this ritual is seen as an admission of guilt. Sociologist Obafemi Awolowo wrote that widowhood practices among the Yoruba people differ; the higher the status of the woman, the less intense the ritual. This tradition was recorded among the Yoruba tribe in 2010.

It is the wish of Olodumare, the Supreme Creator, that human beings should promote good as much as possible, and those who do this are rewarded with immortality through access to the afterlife. Therefore, human beings’ vast capability for moral uprightness is engrained in their culture. A saying from the Yoruba people perfectly sums this up ‘Let one conduct one’s life gently; that one may die a good death; that one’s children may stretch their hands over one’s body in burial’.

Christianity is changing how the Igbo commemorate death. Usually, a church service is held before the first funeral, and churches frown upon ‘Ikwa Ozu’, so some become memorial services. Churches place a three week limit on how long relatives can preserve their deceased in the mortuary, which aims to prevent elaborate and expensive second burials. The more committed a family is to their Christian faith, the less likely they are to have any Igbo ceremony, and some Christians state that no traditional rituals should be conducted for them. However, without organising an “ikwa ozu” for the deceased, family members cannot receive titles or hold key positions within the community, as Igbo tradition stipulates woeful consequences for those who don’t ensure their loved ones’ place in the next world. Many church-goers attempt to mitigate this risk by masking ancient traditions with Christian themes.

The Hausa Tribe - Lauren Hughes The Hausa tribe’s views regarding death have changed over time. Whilst they predominantly follow Islam, and therefore the same rights of passage following death, a smaller proportion of the population, known as Maguzawa, still follow the tribe’s original religion. This religion worships spirits known as Bori or Isoki, which inhabit all objects, including trees, rocks and bushes.

When angered, it is believed that the spirits gradually suck away a person’s life force until they are either dead, or able to appease the spirit. The Maguzawa believe that the spirits of ancestors continue to live on around them, and so when praying for protection and fruitful harvests they will invoke both the Bori spirits and their own ancestors.

However, as the majority of the Hausa people are Muslim, their beliefs surrounding death are quite different.

Death is seen as a separation of the body and the soul, and funeral rites are followed carefully. The body is washed within 24 hours of its death, and is shrouded

The Igbo Tribe The Igbo tribe believe that death is not an end to life, but simply a transition to a new world. Traditional burials include two funerals and a wake. Only after this can the deceased pass from the period of torment “ita okazi” into a state of peace and contentment.

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in a white cloth known as a kafan. A three day mourning period of praying follows. Wives who lose their husbands are expected to mourn for 4 months and 10 days. The Hausa tribe previously followed very different beliefs, as can be seen in the Maguzawa religion, but the progression to Islam as the predominant religion has significantly impacted their beliefs and practices surrounding death.

The key responses to death in the Yoruba, Igbo and Hausa tribes were not massively different in the past, however more modern influences from religions such as Christianity and Islam mean that they are changing.

The Yoruba and Igbo tribes have the most similarities, such as how they view death as simply a transition from one state of being to another, but even they are growing to have less in common, due to Christianity’s effect on the Igbo tribe in particular.

Bibliography https://www.bbc.co.uk/news/world-africa-22610497 https://classroom.synonym.com/burial-rites-igboculture-2377.html http://academics.smcvt.edu/africanart/kristen/ yoruba.htm https://www.refworld.org/docid/50b4aa8c2.html https://en.wikipedia.org/wiki/Yoruba_culture

23

CRISPR, DESIGNER BABIES

to make it easier to recognise for the associated protein.

The enzyme Cas9 then follows the guide RNA to the specific part of the DNA sequence. It then binds to the guide RNA and cuts both strands of the DNA.

AND PROF. JIANKUI – AN ETHICAL DILEMMA

A recent, yet widely controversial example of this rapidly evolving gene editing technique, occurred last November (2018). The Chinese scientist He Jiankui scandalised the global community with the proclamation that he had ‘created’ the first genetically edited people – the twin girls Lulu and Nana.

Imogen Grimwade (WHS), Hannah Mohamed (WHS), Clara Norenberg (OHS) CRISPR (Clustered Reg-ularly Interspaced Short Palindromic Repeats) was discovered in 1987, and is a method used to genetically modify genes. It consists of a guide RNA molecule and an associated protein, which work together to cut genes to either destroy them (as in the case of viral DNA) or for genetic modification.

Professor Jiankui had the intention of developing resistance to HIV, though the process of targeting and then consequently editing mutations into the CCR5 gene (using the Crispr-Cas9 technology). CCR5 was chosen since it encodes a protein which allows HIV to enter white blood cells. This protein can be disabled by deleting part of the gene – imitating CCR5-∆32, a naturally occurring mutation conferring resistance to HIV. A study carried out by the University of California looked at almost 410000 people in the UK. It demonstrated that those with only the mutated version of CCR5 were 20% more likely to die before they turned 78. Therefore, suggesting that the ‘CRISPR babies’ may have a shortened life expectancy.

Although some people may view this case as a radical advancement in both science and ethics; in the majority of countries, this variety of gene editing is forbidden due to the exploratory nature of the technology and that any alterations to DNA have the potential to pass on to future generations, with possible unpredicted s ide-effects.

Therefore, it is evident that this was seen as a widely controversial issue throughout the world. This seems mainly due to the door opened by He Jiankui to other forms of genetic engineering and developments in so called ‘Designer babies’. This poses the ethical question of whether it is morally acceptable to allow specific traits to be prioritised and others to be completely eliminated. This could potentially enable an elite, select group to emerge with an abundance of ‘positive’ characteristics (for example athleticism, intellect, good memory, good looks). This would inevitably allow the rich of society to get even richer by the production of superior offspring in an undoubtedly expensive process.

This would suggest that ‘Designer babies’ could lead to a retrogression to clear class division, from the already divided society that we live in. This shows how these scientific developments could be socially dangerous and regressive, rather than an indication of the scientific progress we are capable of.

The guide RNA molecule is a section of RNA (usually 20 base pairs long), where the nucleoti-des are complementary to a specific section of DNA. These attach to the complementary nucleotides on the DNA

However, it does seem as though this scientific progress could be used for the greater good. One way in which it could most definitely benefit our society would be in the eradication of certain genes leading to genetic defects 24

or diseases. This involves the examination of embryos and identifying certain disease-causing genes, so that they can be removed, or new genes added to alter the outcome. On the surface this seems like a positive scientific development as it could potentially prevent babies being born with congenital disorders or serious diseases. Therefore, the idea of ‘Designer’ or genetically modified babies could be massively beneficial, in their potential to reduce the future suffering of those with birth defects or a propensity for a certain disease in later life.

In conclusion, ‘Designer babies’ do pose an important ethical dilemma in the modern era. The idea of a growing elite society of genetically superior children is definitely a frightening one, and one with huge social impacts. However, the benefits of developing ‘Designer babies’ are also very significant, in their potential to alleviate the hardship caused by many congenital defects. Consequently, it seems as if there is a very fine line between major health benefits and social crisis.

Bibliography Ball, P (2017). Designer babies: an ethical horror waiting to happen? The Guardian Gallagher, J (2019). He Jiankui: Baby gene experiment ‘foolish and dangerous’. BBC Greshko, M (2019). Error undermines finding of health risks in first gene-edited babies. National Geographic Reardon, S (2019). Gene edits to ‘CRISPR babies’ might have shortened their life expectancy. Nature Unknown (2016). What is CRISPR-Cas9? Your Genome Unknown (2018). World’s first gene-edited babies created in China, claims scientist. The Guardian Unknown (2019). Designer baby. Wikipedia Image Source https://www.yourgenome.org/sites/default/files/ illustrations/process/crispr-cas9_process_yourgenome. png

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‘DESIGNER BABIES’ ETHICS

The ethical dilemma2

Imogen Grimwade (WHS), Hannah Mohamed (WHS), Clara Norenberg (OHS)

This poses the ethical question of whether it is morally acceptable to allow specific traits to be prioritised and others to be completely eliminated. This could potentially enable an elite, select group to emerge with an abundance of ‘positive’ characteristics, e.g. athleticism, intellect, good memory, good looks etc.

This would inevitably allow the rich of society to get even richer by the production of superior offspring in an undoubtedly expensive process. This would suggest that ‘Designer babies’ could lead to a regression to clear class division, from the already divided society that we live in. This shows how these scientific developments could be socially dangerous and regressive, rather than an indication of the scientific progress we are capable of. In conclusion, ‘Designer babies’ do pose an important ethical dilemma in the modern era.

The idea of a growing elite society of genetically superior children is definitely a frightening one, and one with huge social impacts. However the benefits of developing ‘Designer babies’ are also very significant, in their potential to alleviate the suffering caused by many congenital defects. Therefore it seems as if there is a very fine line between major health benefits and social crisis.

How it works The CRISPR method to genetically modify genes consists of a guide RNA molecule and an associated protein, which work together to cut genes to either destroy them (in the case of viral DNA) or for genetic modification. The ‘guide’ RNA molecule . The ‘guide’ RNA molecule is a section of RNA (usually 20 base pairs), whose nucleotides are complementary to a specific section of DNA. These attach to the complementary nucleotides on the DNA to make it easier to recognise for the associated protein. The associated protein molecule (Cas9 enzyme The enzyme CAS9 follows the guide RNA to the specific part of the DNA sequence. It then binds to the guide RNA and cuts both strands of the DNA.

The benefits of genome editing One way in which it could most definitely benefit our society would be in the eradication of certain genes leading to genetic defects or diseases. This involves the examination of embryos and identifying certain disease causing genes, so that they can be removed or new genes added to alter the outcome. On the surface this seems like a positive scientific development as it could potentially prevent babies being born with congenital disorders or serious diseases. Therefore, the idea of ‘Designer’ or genetically modified babies could be massively beneficial, in their potential to alleviate the future suffering of those with birth defects or a propensity for a certain disease in later life.

Bibliography Greely, H. (2019) CRISPR’d babies: human germline genome editing in the ‘He Jiankui affair. Journal of Law and the Biosciences. https://academic.oup.com/jlb/advance-article/ doi/10.1093/jlb/lsz010/5549624 Unknown (2016) What is CRISPR-Cas9? (photo source) https://www. yourgenome.org/facts/what-is-crispr-cas9Ball, P. (2017) Designer babies: an ethical horror waiting to happen?, The Guardian website https://www.theguardian.com/ science/2017/jan/08/designer-babies-ethical-horrorwaiting-to-happen Unknown (2019) Designer baby, Wikipedia https://en.wikipedia.org/wiki/Designer_ baby

Example The Chinese scientist He Jianku1 tried to stop HIV developing in children of whom the father was HIV positive and the mother HIV negative (2016-2018).

His theory was that if his CRISPR construct affected the CCR5 protein which is found on the surface of a specific type of white blood cells, T-cells. If this protein wasn’t working properly, then the T-cells couldn’t be infected with HIV and so the children couldn’t catch HIV and develop AIDS. Although his theory turned out to be incorrect, this is a great step towards treating genetic diseases with genome editing.

1CRISPR’d

babies: human germline genome editing in the ‘He Jiankui affair. Journal of Law and the Biosciences 2Designer

babies: an ethical horror waiting to happen?, The Guardian

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