Module: Child Health Related to Genetics
Lesson Objectives:
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Learn what genetic diseases are
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Understand what causes genetic diseases
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Learn the importance of testing for genetic mutations
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Understand what forced marriage
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Know what options are available and where to seek information
Links to PSHCE objectives
 how to assess and manage risks to health and to stay, and keep others, safe
 how to identify and access help, advice and support
In the week before the module begins students across the school will take an active role in Jeans for Genes Day. All students will have an assembly during that week to promote Jeans for Genes and to gain a broad understanding of genetic diseases
Lesson 1(22 September):
Activity 1 : Students will meet in the 6 th Common Room for the first part of the lesson. The beginning of the session will cover the success of Jeans for Genes Day in the school and how our fundraising helps the charity change the world for children with genetic disorders. Then Anita Matadeen will speak about her role as a Genetics
Counsellor and she will be bringing with a patient to share their experiences with the year group.
Activity 2: The second part of the lesson will be back in classrooms where students will watch a video on young person’s story of deciding to get a genetic test when he turns 18 to determine if he is a genetic mutation for Huntington’s disease like his mother https://www.youtube.com/watch?v=xguyxdmeUK8.
Activity 3: (If time or use the starter for next lesson) Pass out the different
Factsheets to pairs in the class (there are 5 factsheets) and give them 5 minutes to read the sheet. Afterwards starting with Factsheet A have different pairs summarise the factsheet for the rest of the class (see attachment)
-Resources are from the Science Communication Unit of Welcome Trust

Lesson 2 (29 September)
Activity 1: Students will play a game where they “mate” with other students and determine the genes passed on to their child and if the child has genetic mutations.
Activity 2: Students will be given a quick survey on the genetic screening and discussion should follow afterwards on their responses (see attached survey).
-Resource is from the Science Communication Unit of Welcome Trust
Activity 3:
Teacher should designate one side of the classroom as “Strongly Agree” and the other side as “Strongly Disagree”. Show the PowerPoint of the different questions/viewpoints about genetic testing and have the class move to the area of the room they fit most with.
Lesson 3 (6 October)
DON’T TELL STUDENTS YOU ARE GOING TO TALK ABOUT FORCED
MARRIAGE UNTIL AFTER THE STARTER
Starter : Show Powerpoint of questions-listed below, resources adapted from PLAN ,
1. How would you feel if you were not allowed to do things you enjoyed doing?
2. What would it be like to start a new life somewhere else all by yourself with a new family?
3. How would you feel if you decided not to go, and your family disowned you?
Activity 1 : Tell students they are going to watch part of a documentary about forced marriage which may cause some distressing feelings. The video is at https://www.youtube.com/watch?v=7c_zppPutQw only show the first 9 minutes, stop once the second lady comes up to the podium.
Activity 2 : Have the students get into small groups and discuss their thoughts. After about 5-10 minutes have groups report back their discussions to the whole class.
Activity 3 : Pass out the discussion cards with the following statements on them. Let groups discuss for about 10-15 minutes then discuss as a class, resources from
PLAN
“Forced marriages only happen in Asian families”
Forced marriage is not restricted to the south Asian community. There have been cases involving families from the Middle East, Europe and Africa .
“Forced marriages and arranged marriages are the same”
There is a strict distinction between forced and arranged marriage. Forced marriage is carried out without the consent of the child and often involves

pressure or coercion. Forced marriage is not sanctioned within any culture or religion.
“Forced marriages don’t happen in the UK”
Some forced marriages are carried out in the UK. Watch a short video from the Guardian about forced marriage in the UK at http://www.guardian.co.uk/world/2009/jan/11/british-asian-forced-marriages
“There’s no law against forced marriage”
It is illegal to force someone into marriage. The penalty is prosecution and up to two years in jail.
“The parents know what they’re doing is wrong”
Some of the key motives for forced marriage that have been identified are:
 The concept of ‘Izzat’ or honour drives some parents who see nothing wrong with their behaviour. The motivation and wish to build stronger families and to preserve cultural or religious traditions can override the wishes of the child.
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Controlling unwanted behaviour and sexuality (including perceived promiscuity, or being gay, bisexual or transgender) - particularly the behaviour and sexuality of women.
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Peer group or family pressure.
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Attempting to strengthen family links.
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Ensuring land remains within the family.
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Protecting perceived cultural ideals which can often be misguided or out of date.
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Protecting perceived religious ideals which are misguided.
 Preventing ‘unsuitable’ relationships outside the family’s ethnic, cultural, religious or caste group.

Assisting claims for residency and citizenship.
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Long-standing family commitments.
“It’s best not talk about it in case I offend someone”
Forced marriage should not be treated with caution for fear of offending cultural sensitivities. It can involve child abuse, abduction, violence, rape, unwanted pregnancy and enforced abortion. Refusing to marry can place a young person at risk of murder, sometimes also known as ‘honour killing’.
Plenary: Watch news clip and discuss at http://www.edp24.co.uk/news/crime/video_experts_gather_at_norwich_conference_t o_turn_the_spotlight_on_forced_marriage_1_3815355

Lesson 4 (14 October)
Starter: Show students the short video on Tutankhamen https://www.youtube.com/watch?v=B_RWs3Lpy0Q that discusses the reasons behind why Tutankhamen (and other Egyptian pharaohs) had low mortality rates.
Activity 1: Watch video on the Born in Bradford study (00:32-9:20) https://www.youtube.com/watch?v=lIlMUTjmAfs
Activity 2: Students will be given a case study on Bradford in pairs to read then discuss (see attachment)
Activity 3: Hand out the card sort activity on marrying a relative and have them use their desks as a continuum from “Very Negative” to “Very Positive”, students will put each card where they feel appropriate, then discuss as a class.
Activity 4 : Ask students what advice they would give to pregnant women who are either over age of 34 or having a child with a relative (pregnant women, and couples who plan on having a child, can get a referral to a Genetics Counsellor from their GP to have Genetic testing done to determine if their child has genetic mutations or could have based on the parent’s genes)
Activity 5: Students will be asked to complete a survey on the module

NAME…………………...
PSHCE Self-Assessment Sheet
Year 10 Health Related to Genetics
You will use this sheet to review your knowledge and skills in these areas before the series of lessons and how they have developed afterwards
1 BEFORE the series of lessons, place a tick in one of the ‘before’ columns in each of the topic areas
Tick the appropriate box for either before or after the lessons
Don’t understand or know
Partly understand or know
Fully understand or know
BEFORE AFTER BEFORE AFTER BEFORE AFTER
I know what genetic diseases are
I understand what causes genetic diseases
I know the importance of testing for genetic mutations
I know what options are available for genetic testing and where to seek information
2 AFTER the series of lessons, place a tick in the box of one of the ‘after’ columns in each of the topic areas - have you moved on?
3 Complete the box below by adding anything else that you learned in this module, or what skills you feel you developed
When completed, this shee t should be filed in the ‘PSHCE’ section of your PSHCE folders

Lesson 2 Factsheet A: What is Genetic Testing?
Genetic testing involves examining a person’s DNA, by taking a sample of cells
(from blood, or occasionally, from other body fluids or tissues). Genetic tests are usually done to check for changes in someone’s DNA that can cause disease or disability. Dome of these DNA changes can be inherited from our parents.
What types of testing exist?
Genetic tests are usually used to check if a person has a genetically inherited condition or see what person’s risk is of getting a genetic condition in the future. The different types of genetic tests are outlined below:
Diagnostic: tests used to confirm a diagnosis based on physical signs
Prediction: tests used to find mutations that cause disease/disability later in life
Carrier Identification: tests used by people with a family history of genetically inherited disease (often used by couples when deciding to have children)
Prenatal: tests used to check the DNA of a foetus when there is a risk of having a child with mental or physical disabilities
New-born Screening: tests done once a baby is born to check if it has any genetic conditions
Forensic Testing: tests that are used to identify an individual for legal purposes
Research Testing: tests used to find unknown genes or to identify the function of a gene

Lesson 2 Factsheet B: How do Genetic Tests Work?
Genetic tests are done primarily on people in the following situations:
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Person over the age of 18 wants to see if they are a carrier of a genetic disease
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A parent who wants tests done on their infant to check for genetic diseases (usually done if a parent is a carrier or has a genetic disease)
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Pregnant mothers who want tests done on their foetus to check for genetic diseases
Once a person decides to have a genetic test done, they need to speak with their GP who will then refer them to a medical geneticist, genetic counsellor or primary care doctor who can order the test after getting the person’s consent.
Genetic tests are performed on a sample of blood, hair, skin, amniotic fluid
(the fluid that surrounds a foetus during the pregnancy), or other tissues.
For example, a medical procedure called a buccal smear uses a small brush or cotton swab to collect a sample of cells from the inside of the cheek.
The sample is sent to a laboratory where technicians look for specific changes in chromosomes, DNA, or proteins, depending on the disorder they are looking for.
The laboratory then reports the test results to the person’s doctor or genetic counsellor.

Lesson 2 Factsheet C: How are the Results of Genetic Test Understood?
The results of genetic tests are not always straightforward, which often makes it hard to understand and explain them. When interpreting test results, doctors look at a person’s medical history, family history, and they type of genetic test that was done.
A positive test result means that the laboratory found a change in a gene, chromosome, or protein of interest. Depending on the purpose of the test, this result may confirm a diagnosis, show that a person carries a genetic mutation, identify an increased risk of developing a disease in the future or suggest a need for further testing. A positive test cannot show how severe a disease is or when exactly it will appear.
A negative test result means the laboratory did not find a dangerous copy of the gene, chrisom or protein of interest. This result can show that a person is not affect by a particular disorder, is not a carrier of a specific genetic mutation, or does not have an increased risk of developing a certain disease. It is possible however; that a test missed a disease-causing mutation because tests cannot find all of the genetic changes that can cause a particular disorder.
More testing may be needed to confirm a negative result.

Lesson 2 Factsheet D: What are the Benefits of Gene Testing?
People with a family history of genetic conditions worry about their own future as well as that of their children.
If a test shows a negative result:
When a test showing that a person’s DNA doesn’t have the genetic mutation that causes the disease/disorder it can be a big relief.
A negative result also means they can have less frequent medical check-ups.
If a test shows a positive result:
A test that shows that a person has a genetic condition can relieve their uncertainties and help them make informed decisions about their future.
For conditions that can be treated, a test can speed up the process of diagnoses and help treat the diseases early on or reduce its severity. For tests that predict a person’s risk of getting a disease in the future it can help encourage changes in lifestyle to reduce the risk.

Lesson 2 Factsheet E: What are the Disadvantages of Gene Testing?
Most disadvantages are to do with the way results of the tests can change a person’s life.
Psychological impact: the emotions roused by learning that you are likely to develop a disease can be very stressful. Many people in families with a history of disease have already seen close relatives struggle. A study found that, after
3 to 6 weeks, women that were tested for specific cancers, and received tests results showing that they are at risk, experienced persistent worries, depression, and confusion and sleep disturbance.
Family Relations: unlike other medical tests, gene test reveal information not only about us but also about our relatives. The decision to have a genet test can affect the entire family. It can also reveal family secrets involving paternity or adoption. If a baby tests positive for sickle-cell anaemia it means that both of his or her parents carry the mutation that causes it. Someone identified as carrying the gene may feel anger, while one who hasn’t inherited the condition may be overwhelmed by guilt because they avoided the disease.
Medical Choices: someone who finds out they have a gene that puts them at high risk of genetic a specific cancer may start having different therapies, or regular check-ups, that are dangerous or not always effective.
Privacy: our genes hold an encyclopedia of information about t us and, indirectly, about our relatives. Who should be able to have this information?
And how is the information kept private? Genetic test results are normally included in a person’s medical records. And forensic tests results are kept in a national gene bank. Safeguarding this information is never a guaran tee.

Lesson 2 : Genetic Testing Questionnaire
NOTE: These questions are hypothetical and for a few of the conditions/traits mentioned there are no genetic tests to date
1) For which of these conditions would you like to be tested for?
Alcoholism
Cystic Fibrosis
Genetic Trait No Yes
Manic Depression
Obesity
Diabetes
Achondroplasia (Dwarfism)
Dyslexia
2) Prenatal testing shows that your future child will have one of the following conditions. How will this affect your decisions?
Genetic Trait I would terminate the pregnancy
I would prepare and make lifestyle changes
I would do nothing and let nature takes it course
Alcoholism
Cystic Fibrosis
Manic Depression
Obesity
Diabetes
Achondroplasia (Dwarfism)
Dyslexia
A girl when I wanted a boy or vice versa
Deafness
Down Syndrome
3) Would you accept to take part in a genetic survey that would tell you about genetic conditions you have
YES and I would want to know all of the information
YES but I wouldn’t want to know all of the information
YES in the name of scientific research, but I wouldn’t to know the information
NO I would refuse to participate

Lesson 4: Forced Marriage Discussion Cards

Lesson 4: Born in Bradford Study into the Impact of Congenital
Anomalies on Health
Approximately 2 in every 100 babies in England and Wales are born with a congenital anomaly or birth defect. These disorders occur because of chance defects in the genes that a baby inherits from its parents, or because of damage done by infections like rubella, or drugs like thalidomide. These disorders are found in all communities although there are larger proportions reported in Pakistani communities in the UK.
Various risk factors are associated with having a child born with congenital anomalies.
These include: being an older mother, that is over the age of 34, smoking during pregnancy, heavy alcohol consumption and obesity. Consanguineous marriage
(marriage between blood relatives) is a further risk factor because some genetic disorders (called autosomal recessive disorders) are more likely to occur where parents are closely related. This is because relatives are more likely to carry the same damaged genes.
Most children born to cousins will be healthy; however a larger number than occurs in families where parents are not cousins, will have health problems that may lead to death, or long term illness for the baby.
What we did
We looked at the link between various lifestyle and clinical factors and the prevalence of congenital anomalies in Bradford.
A number of different factors have been identified in previous studies as to why congenital anomalies might occur.
We took each of these factors and looked at how far they were evident in babies included in BiB who had been identified as having been born with a congenital anomaly.

What we found
We found two factors were linked with an increased risk of having a baby with a congenital anomaly:
1. W hen the baby’s mother is over 34 years of age
2. When a mother is married to her cousin
About 63% of Pakistani mothers in the Born in Bradford study are married to cousins and when the researchers looked more closely at the Pakistani mothers in the BiB cohort they could see that within that group there was a doubling of the risk of a baby being born with a congenital anomaly from 2% of all births, to 4% in babies born from consanguineous relationships (2nd cousin or closer).
What does this mean?
Even with increased risk for mothers over 34 and a doubling of risk for those married to cousins it still means that most babies born to a couple who are related do not have genetic problems but when such problems do occur they can be very serious for the baby and family.
What next?
This research helps build up a picture about risk that can help the health professionals who give advice to people considering having a baby, and can also inform members of the public about these small but significant avoidable risks.
– Dr Eamonn Sheridan, Senior Lecturer in Clinical Genetics, University of Leeds and
Bradford Institute for Health Research

Lesson 4: Card Sort Activity
Cut out and arrange these cards on a line from “very negative” to “very positive”
b