DAYGLO
TABLE OF CONTENTS
Introduction
4
Aims
4
DayGlo in Your School
4
Sensitive Issues
5
Any Questions?
5
Short On Time?
5
DayGlo
6
Characters
6
Short Synopsis
6
Plot Outline
7
Preparatory Lessons
9
Preparatory Activity 1: What does it mean?
9
Preparatory Activity 2: What do we feel?
9
Preparatory Activity 3: What do we think?
10
Preparatory Activity 4: I’d like to ask…
11
Information
13
What is Pharmacogenetics?
13
What is genetic testing?
13
Links
13
The Science
13
Adverse Drug Reactions
14
Pharmacogenetics in Medical Practice
14
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Challenges of Pharmacogenetic Medicine
15
The Issues and Themes
17
Glossary
21
Development of DayGlo
28
Find Out More About Our Work
30
Links
30
Contact Us
30
Credits
31
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Introduction ‘DayGlo’ explores the social, moral, scientific, economic and political questions raised by advances in pharmacogenetics and genetic testing. The exciting new science of personalising medical treatments according to our genes.
Aims The programme (play, debate and educational resources) aims, through theatre and debate, to: Raise young peoples’ (14-18) and adults’ awareness of the issues raised by pharmacogenetics, the move towards personalised medicine and its impact on our future health, by engaging them in an informed debate about the issues surrounding the subject through the Theatre of Debate programme Raise awareness of the issues around genetic testing. As science develops more genetic tests, how do we decide what information we really want? What are the consequences of knowing our genetic make up – for us and for society? Identify and clarify misunderstandings and provide engaging stimulus material to provoke discussion in order to gather both quantitative and qualitative data on the attitudes and concerns of the target audience To help young people and the public in general to develop a realistic perception of the opportunities and challenges raised by pharmacogenetics and genetic testing.
DayGlo in Your School The Theatre of Debate model consists of a performance of the play (approx 60 minutes), a debate (45-60 minutes) and online educational resources. Before the performance, the Y Touring facilitator will introduce the audience to the use of the electronic voting system and the subject matter. After the performance there will be a facilitated, informed debate/conversation in which the actors return in character and answer questions from the audience. Electronic voting is used before the performance and then throughout the following debate.
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Online resources will be made available to you with further information and suggested lesson plans.
Sensitive Issues Like any good drama, ‘DayGlo’ explores some challenging issues including: terminal illness, breast cancer, genetics, genetic screening and sickle cell anaemia. Given that one in eight women will develop breast cancer and that sickle cell is the most common serious inherited disease in England, it is likely that a number of your students will have direct family experience of the conditions or indeed know of friends’ families who have been affected. If you or your students would like further information on Sickle Cell or Breast cancer can we suggest you start by visiting whichever of these sites is most appropriate Breakthrough Breast Cancer http://www.breakthrough.org.uk/breast_cancer/ The NHS Sickle Cell and Thalassamia Screening Programme www.sickleandthal.org The Sickle Cell society http://www.sicklecellsociety.org/ As six young people (13-24 years old) are diagnosed with cancer in the UK every day, it is also possible that one or more of your students may have direct personal experience of this. If you would like further information regarding teenage cancer, visit Teenage Cancer Trust’s website www.teenagecancertrust.org/what-we-do/education. When discussing the play after the students have seen it, it is important to ensure that there is respect and trust within the group to enable open discussion. It is advisable to set clear ground rules with the students focusing on listening to and respecting differences in opinion.
Any Questions? If you have any questions after reading through the information, please don’t hesitate to contact us either by phone 020 7520 3090 or by email to s.byrne@ytouring.org.uk
Short On Time? If you are short on time, we suggest that you prioritise the ‘What Does it Mean?’ and the ‘What Do We Think? activities, as they offer the most direct way to prepare your students for the play. In order to prepare yourself we suggest you familiarise yourself with the plot outline, the background information and the glossary. PAGE 5 OF 31
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DayGlo
Evelyn played by Rebecca Crankshaw and Stella played by Julia York in Dayglo
Characters Evelyn 48, self declared punk priestess with a rich and chaotic life, lived on the fringes of the establishment. Now diagnosed with breast cancer. Stella 17, Evelyn’s daughter, raised by the artistic community, her grandmother and herself. She has moved back in with Evelyn to support her. Noel 19, serves at The Chicken Shack, a fast food joint on the site of ‘Backtrax’, Evelyn’s old record shop haunt. Brian 32, Oncology nurse, gay. Brian fell in love with Evelyn’s music when he was 18 whilst clubbing. Brian recognised Evelyn on the cancer ward six months ago and they have since became close friends.
Short Synopsis A young woman is forced to make choices in a world of uncertainty. Stella is desperate to explore what choices are open to her mother Evelyn, who is battling breast cancer. She is PAGE 6 OF 31
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eager to fan the flames of hope and have her mother restored to her, but the odds are precariously stacked against them. “When I was a teenager I was running around barefoot, I didn’t have a thought for the future, it was all about the music” Poly Styrene (Marianne Elliot-Said) of punk band X Ray Spex, who died of breast cancer in April 2011.
Plot Outline Stella arrives home in Brighton to visit her mum Evelyn after a five year absence. Anxious about the reunion, she stops off at a chicken take- away joint and is served by Noel, who dampens her fears with his wit. Stella meets her mum at an eclectic sea-front flat and learns that mum is recovering from breast cancer. Stella feels manipulated into staying on in Brighton, but can see Evelyn is in need of support. Noel at The Chicken Shack says he has a brother with sickle cell anaemia so he is familiar with the idea of illness within a family. Together they set about familiarising themselves with Evelyn’s medical condition. They discover that Evelyn has a family history of breast cancer of which she was unaware, Great Great Grandad Douglas died of it in 1920, his two daughters also died from cancer years later. The family history information means Evelyn is now eligible for BRCA testing to see if she is positive for BRCA 1 or 2 – genes which increase the risk of breast cancer. Stella persuades her mum to have the BRCA test but Evelyn is cautious: she has fought most of her life from the standpoint of anarchy - what the state has got on you they can use against you - including your genes. Also, if Evelyn turns out to be BRCA positive, this will have implications for Stella because it indicates that the cancer has a higher chance of being inherited. The implications of having a genetic test for cancer are compared with having a genetic test for sickle cell. Noel has had a genetic test to see if he is a carrier and whether he can be a bone marrow donor to help his brother. The test results show that Evelyn is indeed BRCA positive. Evelyn’s nurse, Brian, is optimistic, pointing out that Evelyn may benefit from new drugs called PARP inhibitors which are targeted to BRCA positive tumours. This is an example of pharmacogenetics at work. The treatment options for cancer are compared by Noel to the lack of options for sickle cell which has received less than its fair share of funding and is still shrouded in stigma and misunderstanding Evelyn does not automatically have access to the PARP inhibitor because it has to undergo clinical trials in order to be shown to be safe, and to work in the way intended. Running such trials is dependent on people being willing to take part and ‘chance’ being randomly given the new drug or the best existing treatment, ie some form of chemo. Stella wants Evelyn to join the clinical trial, while Evelyn is reluctant to subject herself to further treatment and side effects in the 50/50 hope of getting the new drug. Finally agreeing to the trial, Evelyn distracts herself with collating her musical past which is to be a posthumous gift for Stella should she not do well. Stella is between a rock and hard PAGE 7 OF 31
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place, with every new bit of information a new challenge emerges – should she now get tested herself? If Stella too is found to be BRCA positive she may be offered regular screening or preventative surgery. Would Noel still be interested in her if she has the “bad” BRCA gene? Noel himself carries the gene for sickle cell but in many ways choosing to have his genetic test was easier for him. As a carrier, he has not got sickle cell himself and will never get it. The implication of knowing his genetic status is that if he has a baby with another person who is also a carrier, there is a 1 in 4 chance that his child could inherit sickle cell. If Noel and Stella were to get together, it would be important to know if Stella was also a carrier. Evelyn comes off the trial early having found her health worsening whilst others on the trial appear to be flourishing/dramatically improving. Stella is angry, her mum is giving up and not helping in the advancement of a cure that Stella herself may need one day. Evelyn would rather hire a swanky hall in Brighton Pavilion for a farewell gig. This is what all the information from unearthing dear old Great Great Grandad Douglas has led to - Evelyn’s choice and Stella must accept it. Evelyn hires a room in Brighton Royal Pavilion for a punk party, Stella can’t bring herself to go. Noel pleads for Stella to consider turning up but there’s too much baggage from Stella’s past, it’s Stella’s choice to stay away, she runs to the beach as the gig plays out behind her. Evelyn finds Stella under the pier at dawn. Reunited in the moment, mother and daughter watch the sun come up together and finally the emotional healing process truly begins. Abi Bown October 2011
Noel played by Karl Queensborough, Evelyn played by Rebecca Crankshaw, Stella played by Juliet York and Brian played by Glyn Morgan PAGE 8 OF 31
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Preparatory Lessons Preparatory Activity 1: What does it mean? Objective
A discussion exercise to ensure that your students are familiar with the key terms and phrases referred to in the play.You may wish to scan the included glossary and substitute alternative words or phrases that you may feel are more relevant. Process
Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the first word that comes into their head. Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’. After each round clarify the actual meaning of the word or phrase if appropriate and discuss, as a class, some of the associations that have been shared. Words and Phrases
Pharmacology
Cancer
Inherited
Risk
Brighton
Pharmacogenetics
Bioethics
Punk
Wonder Drug
Side Effects
Personalised Medicine
Genetic Testing
Genetic Screening
Sickle Cell
Preparatory Activity 2: What do we feel? Objective
To explore the emotions that students might attach to some of the key words and phrases associated with pharmacogenetics. Process
Explain that you are going to say a word or phrase and that when you call out their name, you want each of your students to say the emotion that they associate with that word. Explain that if they can’t think of a word or if their mind goes blank, they can say ‘Pass’.
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Discuss, as a class, some of the associations that have been shared.You may wish to scan the included glossary and substitute alternative words or phrases that you may feel are more relevant. Words and Phrases
Human Genome
Cancer
Illness
Genetic Testing
Sickle Cell Anaemia
Clinical Trials
Preparatory Activity 3: What do we think? Objective
To explore what your students know, think and feel about issues posed by advances in pharmacogenetics and the questions raised in DayGlo, before seeing the play and participating in the debate. You might want to repeat this activity as a follow up activity as well. Resources
A large empty classroom or drama studio. Process
Ask your students to stand in the centre of the space. Explain that there is an imaginary line running down the centre of the space, one end of the line represents ‘Agree’ and the opposite end of the line represents ‘Disagree’. The middle of the line is ‘Don’t Know’. Explain that you are going to read out a series of statements. If they agree with the statement they should go and stand at the end of the line that is ‘Agree’. If they disagree they should go and stand at the end of the line that is ‘Disagree’. If they are not sure or don’t know what they think they should stay in the middle. After they have taken up their positions, ask your students to explain why they have chosen their position. After hearing from several students give your group the opportunity of changing their position. Repeat the process for each statement.
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Statements
I’d be happy to have genetic testing if it meant a medicine would work better for me. Pharmaceutical companies developing personalised medicines are more concerned with profit than patient care. If it were possible, I would like to know how my genes could affect my future. Scientists are the people who understand emerging technologies and should be the ones to make moral decisions about using them. Medicines are not “one size fits all” and so we should do whatever we can to reduce the risk to adverse reactions – including having genetic tests. Exposing patients to genetic testing could lead to prejudice or discrimination of particular groups. Promoting changes in lifestyle should be encouraged as a better way of reducing the NHS bill than Pharmacogenetics. In terms of what we know now adverse reactions to medicines are estimated to be responsible for 6.5% of all U.K.hospital admissions (True - see page 13)
Preparatory Activity 4: I’d like to ask… Objective
To prime students for the questions that they will have the opportunity to ask in the debate section of the production of DayGlo. Resources
Pen and paper. Process
In pairs, ask the students to come up with two questions. Both are for people who have strong opinions on Pharmacogenetics: PAGE 11 OF 31
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Question 1. is for a pharmaceutical company developing treatments for breast cancer. Question 2. is for someone receiving treatment or someone close to them. Ask the students to make a note of the questions and then share them with the class. They could also take the questions with them into the play and ask them in the debate.
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Information What is Pharmacogenetics? Pharmacogenetics is made up of the words pharmacology and genetics. Pharmacology is the branch of medicine concerned with the uses and effects of drugs. Pharmacogenetics is concerned with patient variation in drug response caused by a patients’ genetic profile. Pharmacogenetics is underpinned by the idea of giving patients the right drug, at the right dose, in order to maximise benefits and minimise side effects.
What is genetic testing? Testing to see if a person has inherited a condition from their parents, or is a genetic carrier, or has a genetic make up which might affect their response to particular treatments. Carriers do not have the condition and will never develop it. However, if they have a baby with another person who is also a carrier, their child can inherit a condition. The results of a genetic test will be true for that person for life – you only need to have the test once.
Links www.ucel.ac.uk/rlos/genetics/Pharmacogenetics/ The University of Cambridge e-learning collaboration website resources at this link offer clear accessible definitions supported by short audio/visual presentations – ideal for a student research project.
The Science Here you need to understand the difference between genotype and phenotype. • Genotype is concerned with the genetic make-up of an organism- in this case, human beings. • Phenotype is how this genetic make-up translates into observable characteristics. The human genome is made up of around 25,000 genes and 3 billion base pairs, or nucleotides. A change on one of these base pairs is called a single nucleotide polymorphism (or SNP, pronounced ‘snip’). Such changes in a persons’ genotype can significantly affect their observable phenotype.
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Examples
• A SNP on the ABCC11 gene determines whether a person produces wet or dry earwax. • A SNP on the OCA2 gene determines green eye colour in Caucasian people Changes in the genotype of a person can have significant effects on their phenotype in terms of their reactions to medicines. So, while one person may find that the dose they take cures their ailment and causes them no side effects, another person might become very ill at the same dose of the same medicine because a SNP in their genome means they cannot metabolise the drug properly.
Adverse Drug Reactions Bad reactions to medicine are more of a problem than a bit of sickness and a few days off school. Adverse drug reactions are estimated to cost the NHS around £2 billion annually. They are estimated to be responsible for 6.5% of UK hospital admissions and are the fourth leading cause of death in the USA. It is also estimated that in the UK, at any one time, the equivalent of three 800-bed hospitals are full of patients experiencing adverse drug reactions. Some adverse drug reactions are caused by other factors, like other medications, drinking alcohol or taking too high a dosage. However, a significant number have a genetic factor underlying them and these genetic factors are what lie at the heart of some pharmacogenetic research.
Pharmacogenetics in Medical Practice At the moment, most medicines prescribed with a ‘companion’ diagnostic test (the pharmacogenetic test) are prescribed by doctors in hospitals rather than coming from your GP. In future, it is likely that a number of medicines prescribed by your GP will be accompanied by a pharmacogenetic test to ensure your safety (avoiding adverse drug reactions) and the effectiveness of the medicine (curing the disease or easing the symptoms). The pharmacogenetic test needs to be performed on a sample of DNA, which can be obtained from a blood test or saliva swab. Using genetics to target medicines: two approaches Genetic information can be used in two main ways to target medicines. One approach looks for genetic variation in, say, a tumour, and then a medicine is prescribed that only works on this particular genetic tumour type. Herceptin is one such drug: it controls the symptoms of advanced stage breast cancer and only works in the 25-35% of patients who have a SNP on the HER2 gene of their tumours. This means that patients are routinely PAGE 14 OF 31
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given a genetic test, and their oncologist (a doctor specialising in cancer treatment) prescribes Herceptin only if they have been shown able to respond to it. Another approach is to look for genetic variation in enzymes involved in metabolizing medicines once they have entered the body. The effectiveness of certain enzymes has been linked to variation in selected genes and this effectiveness can affect the safety of the medicine if, for example, an enzyme that metabolises a medicine does not work properly, resulting in the drug building up in the body and causing toxic side effects.
Challenges of Pharmacogenetic Medicine Pharmacogenetics has many potential benefits, and great advances are being made in human genetic research. This has tempted some enthusiastic supporters to predict a new era of healthcare - personalised medicine. An excellent review from the Royal Society, "Personalised Medicines: Hopes and realities" sets out cautions, challenges and potential� http://royalsociety.org/uploadedFiles/Royal_Society_Content/policy/ publications2005/9631.pdf There are some examples of pharmacogenetic tests and medicines being used in clinical practice, mainly in the area of cancer treatment as outlined earlier. In reality, there are many hurdles to overcome before we are all being regularly given treatment based on our genes, and the introduction of pharmacogenetics is likely to be slow and gradual. This might be appropriate because it will allow scientists time to generate evidence to support whether the tests and medicines are working as predicted to benefit patients. Some of the many challenges are: A large number of interacting genetic patient characteristics (eg. age, kidney and liver function) and environmental factors cause variation in response to a drug, and the role of genetic variation has to be viewed alongside these other factors. It is difficult to link a genetic variant unambiguously with a particular drug response. An association between a particular genetic variant and a response to a drug in one population may not be present in another, hence broadly speaking, a test may be useful in one location (country) but not another. Even when associations between a genetic variant and drug response have been clearly demonstrated, suitable tests still have to be developed and proved to be effective in clinical trials. There are challenges to designing and funding trials. A test that has succeeded in a clinical trial still has to be shown to be useful in a healthcare setting and its economic consequences studied. Pharmacogenetic tests PAGE 15 OF 31
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have to be financially worthwhile for the NHS. Licensing committees have the difficult job of judging whether buying and running pharmacogenetic tests will make drug treatment more effective and reduce the cost of adverse drug reactions. Regulatory agencies will have to consider how they assess and license pharmacogenetic products and set their price. In addition, reimbursement agencies will need to assess whether the pharmacogenetic test and medicine shows ‘added value’ compared with existing treatments. This means understanding the costs and benefits of the new test and medicine compared with existing treatments. Health services will have to adjust to cope with new ways that involve using genetic information to select and target medicines. The behaviour of individual doctors, pharmacists and other health care professionals will need to adapt to learn how best to prescribe medicines using genetic data. Deciding which medical conditions will get investment. Sometimes this is not just dependent on how many people have the condition but upon politics, public understanding and lobbying by those affected. Family implications: Some genetic tests may reveal more than just your potential reaction to a medication. These are called ‘incidental’ findings. Some SNPs are also linked with increased risks of particular diseases, such as type-2 diabetes and Alzheimer’s disease. You may not want to know this information, and/or it may have implications for others in your family. More generally, should patients be obliged to take a genetic test? It might be in their best interests, but should they have the freedom to decline? Would a doctor then prescribe an expensive medicine that might have no value? Or damaging side-effects? As well as individuals, pharmacogenetics has the potential to impact on groups, because the tests can be used to identify sub-groups of the population by identifying, for example, saferesponders or non-responders. What will happen to people who cannot respond to any drug treatment for a given condition? Will drug companies invest in developing drugs for small groups of patients, or healthcare providers be willing or able to afford to buy them? Global justice: Pharmacogenetics is a particularly Western concept in medicine. Worldwide, 884 million people, which equates to ⅛ of the world’s total population, do not have access to clean water, let alone advanced medical techniques. As the wealthy Western world continuously advances medicine, a large gap is created based on access to health and medical products. Colour-coded medicine: Related to the above point, there is also a risk that pharmaceutical companies who produce pharmacogenetic drugs will target them at majority populations in wealthy Western countries who are most likely to be able to pay for them. In doing this, people from other ethnic backgrounds living in wealthy Western PAGE 16 OF 31
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countries may be disadvantaged by lacking access to pharmacogenetic medicine. Traditionally sickle cell which affects more people from black and minority ethnic populations has struggled to find funding in proportion to the patient need.
The Issues and Themes Here are some of the issues that could arise for discussion after seeing DayGlo Knowing your genetic profile will not provide a guarantee of effective treatment. How will pharmacogenetic information affect decisions about the provision of healthcare? How do we decide what genetic information we want to know? Some genetic tests – like the one for Stella - are more about our own health. Some – like Noel’s sickle cell carrier test – are more about the risks for our children. What things would influence your decisions about having a genetic test? How much should we tell our families about our test results? Blood relatives have a higher chance of having the same genes. How should we discuss this with them? What about partners if there is a risk for children? How might this affect some cultures – for example where there are arranged marriages? Personalised medicine is tantalisingly on the horizon but there is still some way to go before it is a reality for most people or conditions How should pharmacogenetic tests be regulated? Should patients be obliged to take a genetic test? It might be in their best interests, but should they have the freedom to decline even if it meant a doctor might prescribe expensive medicine that might have no value or damaging side-effects? What will happen if we can identify people who cannot respond to any drug treatment for a given condition, and who may end up with no medication? Companies may be unwilling to develop drugs for small groups of patients, or drug costs might be too high for healthcare providers to buy them. Some genetic tests may show more than just your potential reaction to a medication. Some SNPs are also linked with increased risks of particular diseases, such as type-2 diabetes and Alzheimer’s. Would you want this information? Pharmacogenetics is a particularly Western concept in medicine. Worldwide, 884 million people (⅛ of the world’s total population) have no access to clean water let alone advanced medical techniques. As the wealthy Western world advances medicine, a large gap is created based on access to health and medical products. PAGE 17 OF 31
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Many believe that pharmacogenetics, like other new fields spawned by the Human Genome Project, represent a misallocation of resources. Rather than embark on learning how genes indicate a predisposition to disease and developing cures and enhancements, global efforts should be spent on solving more urgent problems facing humanity, such as famine or accessibility to clean water. If pharmaceutical companies’ motivations are in part based in making profit, is this problematic? Surely any medical research into certain areas is better than no medical research? Why do companies, the government, other public funders, pick certain areas to research and not others? Do you think you would want to know if you had, for example, the BRCA gene linked to breast cancer? What should be done with this information? Would you tell your daughter, sister, mother, brother etc. if they also could be at risk of having the BRCA gene? Who cares about medical records? If we all had genetic smart cards, what issues would this raise if they were stolen or lost?
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Cancer research in 'golden era', says charity chief
Article from the Times August 3rd 2011 Harpal Kumar believes 'explosion' in understanding of the disease could revolutionise treatment and reduce cost of drugs. Herceptin is used in breast cancer treatment. Tests can now indicate whether it will work on certain patients. The head of the UK's leading cancer charity has said understanding of the disease is advancing "exponentially", as potentially groundbreaking trials to genetically test tumours of 9,000 newly diagnosed patients begin. Describing a "golden era" of research, Harpal Kumar, the chief executive of Cancer Research UK, said there has been "an explosion in our understanding of what cancer is, why it happens, why it doesn't happen in some people and why it moves around the body". The trials backed by the Department of Health and Cancer Research UK are being launched next month in seven hospitals across Britain. Scientists believe the results could revolutionise cancer treatments. They will aim to find out which existing drugs the cancers are susceptible to. They will also potentially pave the way for discoveries of new medicines that are personalised or targeted to the genetic makeup of an individual's cancer and therefore far more effective. The two-year project is intended to lead to a full roll-out of genetic testing of tumours across the NHS. The government has given its backing to increased genetic testing as part of the national cancer plan, which Cancer Research UK believes will bring about a significant change in the way cancers are treated. To read more : http://www.guardian.co.uk/science/2011/aug/22/cancerresearch-golden-era
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Revolution in genetics exposes NHS flaws Article from the Times August 3rd 2011
British patients are missing out on a revolution in personally tailored medicine because the NHS is not ready to deliver it, the Government’s chief genetics adviser says. A decade after the human genome was sequenced, the advances it made possible are ready to transform healthcare, but the NHS is “completely unprepared” to provide them, according to Sir John Bell. David Cameron has taken a personal interest in putting genetics at the centre of NHStreatment and diagnosis of cancer and rare diseases, The Times has learnt. The Prime Minister summoned leading geneticists to a two-hour seminar at Downing Street last month for advice on how the NHS can make genetic medicine routine. Scientists who attended said that he had been enthusiastic about its potential to improve healthcare and save the taxpayer money. But while the advances are starting to become relevant to clinical practice, Mr Cameron’s advisers believe there is a risk that Britain could miss out on the benefits — not only for patients, but also for the growth of a vibrant new life sciences industry. Sir John, who is leading an inquiry into the future of NHS genetics that will report at the end of the year, said: “There has already been a lot of innovation, almost none of which has been adopted by the NHS. There’s now lots of evidence that the benefits we’ll get from this will be at least very large, and could be enormous. “There’s more than enough we could be doing here, but the NHS is completely unprepared.This is not the future any more: it is a technology of today.” The health service lacked the computing infrastructure to deal with huge amounts of genetic information and store it safely, he said. This could lead to breaches of privacy.There are also concerns that insurers will demand access to individuals’ results, though amoratorium forbidding this was recently extended until 2017 To read more: http://www.thetimes.co.uk/tto/news/
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Glossary Breast cancer (malignant breast neoplasm): Breast cancer is the collective term for all the cancers that originate in breast tissue. Most of these begin in the glandular tissue, though the most common of all breast cancers starts in the breast ducts. Most cases of breast cancer are not familial – they occur when there is either no family history or only one case in an older relative, which would be expected to occur by chance. About 300 men develop breast cancer in the UK every year. Of all women who develop breast cancer, about 1 in 5 has a significant family history of the disease. Of these, around a quarter – or 2,400 patients each year – have inherited faults in known breast cancer genes, e.g. BRCA1 and BRCA2. A further 4,800 – 7,200 people each year are believed to be affected by other genetic factors linked to breast cancer, but the specific genes involved are not yet known in many cases. If there is a history of breast cancer, or some other cancers (especially ovarian cancer) in your family, this may increase your risk of developing the disease, and possibly developing it at a younger age. It doesn’t, however, mean that you’ll definitely get breast cancer. We can’t always say what causes breast cancer or predict who will develop it, but a combination of inherited, lifestyle and environmental factors can play a role. The size, stage, rate of growth, and other characteristics of the tumour determine the kinds of treatment. Treatment may include surgery, drugs (hormonal therapy and chemotherapy), radiation and/or immunotherapy. Chemotherapy: Chemotherapy is a treatment for cancer, in which “cytotoxic” drugs are used to kill cancerous cells. “Cyto” means cell, “toxic”, to kill, and these drugs prevent cancer cells from dividing and growing. They are used to treat solid tumours (cancerous lumps) affecting organs such as the breast or bowel, as well as blood cancers such as leukaemia. www.nhs.uk/Conditions/Chemotherapy/Pages/Definition.aspx www.bupa.co.uk/individuals/health-information/directory/c/chemotherapy DNA: Deoxyribonucleic acid - DNA - is the complex chemical that carries genetic information. DNA is contained in chromosomes, which are found in the nuclei of most cells. The gene is the unit of inheritance and different forms of the same gene are called alleles. The Human Genome Project has worked out the human DNA sequence, and its data are useful for forensic science and medical research. www.bbc.co.uk/schools/gcsebitesize/science/edexcel/genes/dnarev1.shtml PAGE 21 OF 31
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Licensing medicines and pharmacogenetic tests: Since 1968, after the thalidomide disaster in the early 1960s, all medicines have to be licensed before they can be prescribed in a particular country. In Europe, this licensing process is overseen by the European Medicines Agency and each EU member state has particular licensing processes in place for their country. Before a medicine is licensed, it can only be prescribed as part of a clinical trial, overseen by another regulatory body. By contrast, pharmacogenetic tests are not as highly controlled and do not have to go through clinical trials before they are used in practice, although this may change in future as regulatory bodies are realising that these tests have a key role to play in affecting subsequent treatment options. www.cen.eu/cen/AboutUs/Pages/default.aspx Genetic Testing (also called DNA-based tests) : Testing to see if a person has inherited a condition from their parents, or is a genetic carrier, or has a genetic make up which might affect their response to particular treatments. Carriers do not have the condition and will never develop it. However, if they have a baby with another person who is also a carrier, their child can inherit a condition. The results of a genetic test will be true for that person for life – you only need to have the test once. Techniques to test for genetic disorders involve an examination of the DNA itself. Genetic testing is done by analysing small samples of DNA collected from blood, saliva or body tissues. In the case of disease, samples can also be taken from e.g. tumours. Genetic tests are used for several reasons, including: • Carrier screening, which involves identifying unaffected individuals who carry one copy
of a gene for a disease that requires two copies for the disease to be expressed; • Pre-implantation genetic diagnosis, screening IVF embryos for disease; • Pre-natal diagnostic testing; where an early-stage foetus is tested; • Newborn screening; • Genealogical DNA testing (for tracing ancestry); • Presymptomatic testing for predicting adult-onset disorders such as Huntington's
disease; • Presymptomatic testing for estimating the risk of developing, for example, adult-onset
cancers and Alzheimer's disease; • Confirmational diagnosis of a condition identified by its symptoms;
See for example: http://kidshealth.org/parent/system/medical/genetics.html PAGE 22 OF 31
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Geneticists: These are the many types of expert who specialise in genetics, ranging from medical doctors who go on to specialise in this area to biologists – pure scientists who work in labs. Hereditary condition: Parents pass on one copy of each gene to their children. If one or both of those copies is mutated, the child is at risk of inheriting a genetic disorder. According to the Human Genome Project, both environmental and genetic factors can influence the development of any disease, including hereditary diseases. A hereditary disease or genetic disorder is caused by abnormalities in a person's genetic material or genome, which can therefore be passed on to their children. www.livestrong.com/article/161925-types-of-hereditary-diseases/#ixzz1WiV8vjPT www.tree.com/health/genetic-health-inherited-conditions.aspx Hospice: Hospices specialise in the control of pain and other symptoms. They are smaller and quieter than hospitals and often work at a much gentler pace. Many have kitchens, sitting rooms and accommodation for relatives, and maybe even a bar. Accommodation and care in a hospice are free of charge, some set up as part of the health service and others funded by charities. Many hospices also have home care teams and day centres for people living at home. www.macmillan.org.uk/Cancerinformation/Ifsomeoneelsehascancer/Advancedcancer/ Hospitalhospicecare.asp
Macmillan: Macmillan Cancer Support improves the lives of people affected by cancer. One in three of us will get cancer. As treatments improve, more and more people are living with cancer in their daily lives. This means they need more than medical help, they also need practical, emotional and financial support. http://www.macmillan.org.uk/Aboutus/AboutUsHome.aspx Mammogram/Breast Screening: The NHS Breast Screening Programme screens around 1.6 million women a year. Women aged 50 to 70 who are registered with a GP are automatically invited for screening every three years. Screening takes place at a special clinic or mobile breast screening unit. A mammogram (X-ray of the breast) is taken by a health professional and then studied to look for any abnormalities. The aim is to find breast cancer at an early stage, when any changes in the breast would be too small to feel and when there is a good chance of successful treatment and full recovery. It is estimated that breast screening saves 1,400 lives a year. PAGE 23 OF 31
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www.nhs.uk/conditions/cancer-of-the-breast-female/pages/screeningbreastcancer (female).aspx It should be noted that currently the evidence for breast cancer screening in the UK is being reviewed amid controversy about the measure's effectiveness. The NHS says screening saves lives, but other researchers have argued that it may cause more harm than good. http://www.bbc.co.uk/news/health-15444879
Mastectomy: A mastectomy is an operation to remove a breast, usually because it has been affected by breast cancer. It is also used to remove non-cancerous breasts in order to reduce the risk of breast cancer developing in people who are at high risk. www.nhs.uk/conditions/Mastectomy/Pages/Introduction.aspx Oncologist: A doctor who specialises in the diagnosis and treatment of cancer. Once a cancer diagnosis is made, it is the oncologist's role to explain the cancer diagnosis and meaning of the disease stage to the patient. They will discuss various treatment options; recommend the best course of treatment; deliver optimal care; and improve quality of life through both curative therapy and care to help ease pain and symptom management. www.medterms.com/script/main/art.asp?articlekey=4637 Opportunity Cost: In the UK, healthcare is provided by the NHS. The government draws money from taxes and national insurance and then decides how much to spend on healthcare. This means that each year there is a fixed healthcare budget and, because not everyone can be treated, a decision has to be made about which treatments to offer. These decisions can be made by a doctor treating a patient or at a broader population level. Economics provides a useful way of thinking about the impact of making decisions to treat one person, or group of people, rather than another. This is called ‘opportunity cost’. If you treat someone then you can hopefully help them, but this means there will be a person or group of people who cannot be treated. These hard choices must be made and ideally informed by evidence that shows the potential benefits of medicines weighed up against the cost. The aim is to maximise value for money.
Punk: In July 1975, Britain was in recession. Unemployment figures were the worst since World War II, with school leavers least likely to find work. Margaret Thatcher had become leader of the Conservative Party in February 1975 and had begun formulating her own brand of Tory policy. PAGE 24 OF 31
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Many of the young people who became punks in the next few years were from impoverished working-class inner-city backgrounds. The social and political climate in which they had been growing up resulted in a feeling that was a mixture of frustration, boredom and poorly focused anger. Coupled with the increasing disillusionment with the complacency of established rock bands, it is not surprising that what emerged became what is now known as 'punk'. Punk music was, for its audience, a refreshing, much needed break from the progressive rock of the early and mid-1970s. Consequently, many punk songs had angry lyrics that criticised the government, the media and Western society in general; for example, 'I'm so bored with the USA' by The Clash and 'God Save the Queen' by the Sex Pistols. The subjects of many other punk lyrics were boredom, teenage rebellion and independence and cynical parodies of love songs recurring themes in the songs of such bands as X Ray Spex and the Buzzcocks. Piercings, tattoos and multicoloured Mohawks were soon to become a signature look for the fan. Most fans would describe themselves as outcasts due to their political beliefs and disenchantment with society and through the music and fashion they had found a way to express their individuality and find a niche for themselves. The ideological culture of punk held some very worthy beliefs such as anti-rascism, antisexism, anti-homophobia, vegetarianism and environmental protection. www.caughtoffguard.co.uk/punk_culture.html www.bbc.co.uk/dna/h2g2/A791336 Radiotherapy: Many people with cancer will have radiotherapy as part of their cancer treatment. It can be given either as: • external radiotherapy from outside the body using high energy x-rays • internal radiotherapy from a radioactive material placed inside the body.
Radiotherapy works by destroying cancer cells in the area that’s treated. Although normal cells can also be damaged by radiotherapy, they can usually repair themselves. Radiotherapy can cure some cancers and also reduce the chance of a cancer coming back after surgery. It may also be used to control a cancer or to help reduce its symptoms. http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/ Radiotherapy/Generalinformation/Whatisit.aspx http://www.nhs.uk/conditions/radiotherapy/Pages/Introduction.aspx Secondary metastasis: The original cancer is known as a primary tumour or primary cancer. If cells break away and spread to another part of the body, forming a new tumour, PAGE 25 OF 31
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this is called a metastasis or secondary cancer. So, a secondary breast cancer is when the cancer that started in the breast has spread to another part of the body. http://cancerhelp.cancerresearchuk.org/type/breast-cancer/secondary/about/what-issecondary-breast-cancer Sickle Cell Anaemia: There is a family of inherited conditions that affect red blood cells. In particular, the conditions affect a special protein called haemoglobin (Hb for short). The function of haemoglobin is to carry oxygen from the lungs to all parts of the body. Some conditions are more serious than others. We call the most serious form sickle cell anaemia. Other conditions that need treatment include Hb-SC and Hb S beta Thalassaemia. People with sickle cell anaemia have sickle haemoglobin (HbS) which is different from the normal haemoglobin (HbA). Normal red blood cells can bend and flex easily, and so travel around the blood vessels easily. When sickle haemoglobin gives up its oxygen to the tissues, it sticks together to form long rods inside the red blood cells, making these cells rigid and sickle-shaped. These cells are then less able to squeeze through small blood vessels, which easily become blocked, preventing oxygen from getting through and causing severe pain and organ damage. People with Sickle Cell Anaemia have two HbS genes – inherited from both parents. Their haemoglobin is written as Hb SS. People who inherit one HbS gene from one parent and one normal Hb gene (called HbA) from the other parent are called carriers. Sometimes this is also known as having a “trait”. Their haemoglobin is written as Hb AS. People who are carriers produce some normal red blood cells so they will never have sickle cell disease themselves. However, if they have a baby with a person who is also a carrier, there is a 1 in 4 chance that their children could inherit sickle cell disease. Being a sickle cell carrier gives people some protection against malaria when they are children. So, in malarial areas, the condition became more common. This is why people are more likely to be carriers or to have the disease if their ancestors come from certain areas of the world such as Africa and the Caribbean. However, anyone can be a carrier. In England there are around 240, 000 carriers. Antenatal screening shows that around 1 in 35 of all pregnant pregnant women in England is a carrier. The NHS screening programme has produced simple factsheets about sickle cell. These are at: www.sickleandthal.org/factsheets On the same website there is a drama about a family experiencing sickle cell and screening. See: www.familylegacy.org.uk There is also a range of information and publications at the screening website. See: www.sickleandthal.org Plus see: http://www.bbc.co.uk/health/physical_health/conditions/sicklecell1.shtml
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http://www.sicklecellsociety.org/websites/123reg/LinuxPackage22/si/ck/le/ sicklecellsociety.org/public_html/disorders/view/1#anchor61284
Teenage Cancer Trust: Every day in the UK, six young people are told they have cancer. These young people often receive hospital treatment in inappropriate facilities catering for children or the elderly. Teenage Cancer Trust focuses on the needs of teenagers and young adults with cancer by providing specialist units in NHS hospitals designed to give young people the very best chance of a positive outcome. As well as state-of-the-art facilities to keep patients occupied during long stays in hospital, the units provide an environment where young people can meet others in a similar situation. Teenage Cancer Trust has built 17 units and plans to build a further 16 so that all young people needing hospital treatment for cancer across the UK have access to the dedicated, specialist support they provide. For further information visit www.teenagecancertrust.org
XRay Spex: X-Ray Spex were an English punk band from London, formed in 1976. Poly Styrene was the stage name of Marianne Joan Elliott-Said, a British musician, songwriter and singer, who was lead vocalist in the band. Despite her relatively short stint with X-Ray Spex, Styrene's overt feminism and mixed-race heritage marked her out among her punk contemporaries and won her legions of fans for generations to come. Poly Styrene was receiving treatment for an advanced form of breast cancer when she passed away in 2011. www.guardian.co.uk/music/2011/apr/26/poly-styrene-dies-aged-53 http://en.wikipedia.org/wiki/X-Ray_Spex
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DEVELOPMENT
Development of DayGlo 'DayGlo' has been researched and developed in partnership with the Association of Medical Research Charities (AMRC) and the University of Ulster, as a teacher resource designed to support the achievement of attainment targets outlined in Key Stages 4 in Science, English, Drama, ICT, PSHE and RS. The DayGlo creative team has been supported throughout the development of this production, by an advisory group comprised of: Maggie Alexander, Director of Policy, Education and Influencing, Breakthrough Breast Cancer www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Maggie.html Dr Olivier Harari, Clinical Science Leader, Roche Products Ltd www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Olivier.html Kimberly Jamie, ESRC/Pharmacy Practice Research Trust PhD student, University of York www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Kimberly.html Professor Valerie McKelvey-Martin, Head of Engagement and Professor of Molecular Biosciences, Department of Pharmacy and Pharmaceutical Sciences, University of Ulster, Coleraine (UUC) www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Valerie.html Professor Katherine Payne, Professor of Health Economics, The University of Manchester www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Katherine.html Professor Munir Pirmohamed, NHS Chair of Pharmacogenetics, University of Liverpool www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Munir.html Dr. Sophie Petit-Zeman, Adviser, Patient Involvement & Engagement, Association of Medical Research Charities (AMRC) www.theatreofdebate.com/Projects/DayGlo/DayGlo/Debate/Sophie.html
Dr Allison Streetly OBE, Director of the NHS Sickle Cell and Thalassaemia Screening Programme and Liz Aram, Communications Consultant to the screening programme, have also provided information and guidance. The screening programme website is: www.sickleandthal.org Students from Hackney Free & Parochial Secondary School (London Borough of Hackney) and Alexandra Park School (London Borough of Haringey) have also contributed to the development of the project. PAGE 28 OF 31
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'DayGlo' is supported by the Wellcome Trust and Central YMCA.
Writer Director
Abi Bown Lisa Spurling
Y Touring Executive Director
Nigel Townsend
Participation Producer
Steven Byrne
Tour Producer & Office Manager
David Jackson
General Manager
Jamie Eastman
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MORE ABOUT OUR WORK
Find Out More About Our Work ‘Works like Y Touring’s The Gift which raise key ethical questions without giving glib answers, are important in preparing us for the future.’ Robin McKie, The Observer Between 1995 and 2010 Y Touring Theatre Company commissioned and produced UK-wide tours of eleven plays exploring scientific advances in partnership with the Wellcome Trust and other bodies including the Mental Health Foundation, Nuffield Council on Bioethics, British Heart Foundation, John Innes Centre, European Dana Alliance for the Brain, Association of Medical Research Charities, Department of Trade and Industry, Medical Research Council, Department of Health, University of Ulster, Royal Albert Hall, National Institute for Health Research, Royal Academy of Engineering and Department for Children, Schools and Families.
Links If you would like to find out more about our work please visit one of the following websites: www.theatreofdebate.com Here you will not only find more informaton about our work but also short films and audio recordings along with educational resources. Relating to a number of our Theatre of Debate productions. www.theatreofdebate.com/ytouring21/ Here you will find a series of essays about our work and a series of video interviews by leading scientists, opinion formers, young people, teachers and artists. These include Professor Lewis Wolpert, our patron Baroness Joan Bakewell and many others
Contact Us Tel: 020 7520 3090 Email: info@ytouring.org.uk Web: www.theatreofdebate.com
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CREDITS
Credits Y Touring would like to thank the following for their contributions to these Preparatory notes : Dr. Sophie Petit-Zeman, Adviser, Patient Involvement & Engagement, Association of Medical Research Charities (AMRC), Professor Katherine Payne, Professor of Health Economics, Health Sciences – Methodology School of Community Based Medicine, The University of Manchester, Kimberly Jamie,ESRC/Pharmacy Practice Research Trust PhD student, University of York and Professor Valerie McKelvey-Martin, Head of Engagement and Professor of Molecular Biosciences, Department of Pharmacy and Pharmaceutical Sciences, University of Ulster, Coleraine (UUC)
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