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Genetics: Our Reproductive Futures?. Transformations: Gender Reproduction and Contemporary Society Week 19. Structure of Lecture. Introduction Genetics: Cultural Representations Public Fear and Fascination Pre-conception Genetic Testing Pre-natal Genetic Testing

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Genetics our reproductive futures

Genetics: Our Reproductive Futures?

Transformations: Gender Reproduction and Contemporary Society

Week 19

Structure of lecture

Structure of Lecture

  • Introduction

  • Genetics: Cultural Representations

  • Public Fear and Fascination

  • Pre-conception Genetic Testing

  • Pre-natal Genetic Testing

  • Pre-implantation Genetic Diagnosis

  • Why is PGD so controversial?

  • The realities of PGD

  • Saviour Siblings

  • Sex Selection

  • Towards the Three Person Baby?

  • Conclusions

Dna cultural icon

DNA: Cultural Icon

  • Double-helix

  • Discovered by Watson and


  • Dorothy Nelkin: Gene has

    become a cultural icon

  • BarabaraDuden: Pop gene

  • What does this image represent?

Genetics our reproductive futures

Art Work by Gena Glover, former artist in residence,

Genetics Unit Guy’s Hospital, London

Genetics our reproductive futures

The X and Y chromosomes magnified many times

Genetics our reproductive futures

  • Stamps issued in 2003 to celebrate 50th anniversary of discovery of structure of DNA

  • Ignores role of women

  • Rosalind Franklin took many of X ray images

  • Died as result of her work

Genetics our reproductive futures

Born 5 July 1996

Celebrity clone dies of drugs overdose

‘Celebrity Clone dies of drugs overdose’

  • Headline in Nature, 18 February 2003

  • Dolly put to sleep aged 6

  • Suffering from incurable lung disease

  • Had six lambs, the ‘normal’ way

  • Body on display in National

    Museum of Scotland

  • Somatic (bodily) Cell Nuclear

    Transfer (cloning) is illegal in

    humans in UK

Genetics our reproductive futures

Fear and Fascination

Genetics our reproductive futures

Guardian, 3 May 2000

Pre conception genetic testing

Pre-conception Genetic Testing

  • To find out if carrying recessive gene for inherited conditions, eg.

    • Sickle-cell / Thalassaemia

    • Cystic Fibrosis

    • Huntingdon’s Disease

    • Tay Sachs

    • Spinal Muscular Atrophy (SMA)

  • If carrier and reproduce with another

    carrier 1 in 4 chance of passing on condition

  • Those with family history can be tested on NHS

  • Otherwise can pay privately

  • May be referred to as Pre-marriage Genetic Testing

  • Dangers?

Pre natal genetic testing

Pre-natal Genetic Testing

  • Helping to have a normal baby?

  • Or…

    • Generating anxiety?

    • Risk of miscarriage

    • ‘Slippery slope’ to abortion

    • Where to draw the line?

    • Regulating gene capital? (female)

    • Commodifying children?

    • Eugenics?

  • Boardman (2011): Women with genetic disabilities face pressure to use genetic testing to ensure a child without the condition

  • Use embodied knowledge of the condition and ‘a good life’ to resist

  • Terminating a foetus with the condition likened to ‘destroying oneself’

Pre implantation genetic d iagnosis pgd

Pre-implantation Genetic Diagnosis (PGD)

  • 8-cell embryo from IVF punctured and single cell extracted

  • Cell contains entire genetic make-up

  • Tested for specific genetic disorders

  • Embryos not affected transferred (up to

  • two) to woman’s uterus

  • Affected embryos discarded or donated to


  • If disease only affects boys then embryos tested for sex and only female embryos selected (haemophilia; Duchennes Muscular Dystrophy)

  • In UK regulated in each case and each condition by HFEA

  • Can also be used to increase chances of successful pregnancy, to match a sibling to be a donor, to have less cancer predisposition

Why is pgd controversial

Why is PGD controversial?

The realities of pgd

The realities of PGD

  • People do not use PGD casually:

    • Very high failure rates (like all IVF)

    • High rates of attrition

    • Expensive

  • PGD patients have usually lost a foetus or a child – their desire is for a healthy baby whowill survive, rather than a ‘designer baby’

  • PGD is a technology of selection, not design

  • As with IVF – an arduous physical process for women

  • New reproductive possibilities…

  • Alongside new risks and responsibilities

Saviour siblings uk pioneers

Saviour Siblings: UK Pioneers

  • ZainHashmi (has Thalassaemia)

  • His parents had a second child disease-free but not a tissue match for Zai

  • Launched global search for

    tissue match, unsuccessfully

  • Raj and ShahanaHashmi

    sought permission to use

    PGD to select embryos that

    do not have disease and

    are a match to Zain

  • Legal wranglings but permission granted

  • IVF unsuccessful (probably due to Shahana’s age and egg quality by time permission granted)

Saviour siblings us procedure

Saviour Siblings: US Procedure

  • Jamie Whitaker (b. 2003) as a ‘saviour sibling’ to his brother Charlie, who has Diamond Blackfan Anaemia (not an inherited condition)

  • Selection (using PGD) performed in US because illegal in the UK

  • Stem cells removed from umbilical cord and frozen

  • Waited 1 year to be sure Jamie did not have BA

  • Age 5 Charlie had chemo to ‘kill’ his own bone marrow, then the transplant

  • 5% risk that process would kill him

  • In 2011 Charlie 100% free of the Anaemia

  • HFEA now relaxed its approach

Saviour siblings first full uk case

Saviour Siblings: First full UK case

  • Max Matthews (b. 2009) as a ‘saviour sibling’ to his sister Megan (who had Fanconi anaemia)

  • Stem cells harvested from umbilical cord at Max’s birth

  • July 2010 stem cells and bone marrow from Max transplanted to Megan

  • First full ‘saviour sibling’ transplant in UK

  • What don’t we hear about?

  • Bone marrow harvesting is an

    invasive procedure

Why are saviour siblings controversial

Why are Saviour Siblings controversial?

Determining the sex of the foetus

Determining the Sex of the Foetus

  • Ultrasound scan at 20 weeks

  • Amniocentesis (risk of miscarriage)

  • PGD of embryo following IVF

  • New blood test – of mother’s blood, from 7 weeks (genetic testing)

    - under medical supervision

    - bought privately eg. pay £179, provide drop of mother’s blood from finger prick, sent in mail

    - at 7-12 weeks 94.8% accurate when

    predicting a boy, 98.9% a girl

    At 20 weeks 100% accuracy

  • Pros and cons?

Sex selection abroad

Sex Selection: Abroad

  • ‘Sex Selection: Getting the baby you want. It’s one thing to wish for a baby boy or girl, quite another to make it happen. Amanda Mitchison meets the couples heading abroad – where the sex selection business is booming’ (Guardian, 3 April 2010)

  • Sex selection is illegal in the UK except on serious medical grounds

Mitochondrial replacement

Mitochondrial Replacement

  • Public consultation in 2012 on procedure to prevent transmission of mitochondrial disease

  • Foetus/baby would arguably have three genetic parents

  • Sperm from father, nuclear DNA from mother, mitochondrial DNA from donor

  • Mitochondria present in almost all human cells, generate energy

  • Two types of mitochondrial disease and this technique aimed at one; faults in mitochondria DNA inherited from mother

  • Technique replaces faulty maternal mitochondria with healthy mitochondria from a donor

  • IVF required

  • February 2014 HFEA published draft rules for consultation

  • Could begin from end of 2014, around 10 cases per year

Pro nuclear transfer

Pro-Nuclear Transfer

Maternal spindle transfer

Maternal Spindle Transfer



  • Health, illness, the body and a wide variety of traits and characteristics are increasingly conceptualised in genetic terms

  • Reprogenetics evokes fear and fascination, spectre of ‘designer babies’

  • Based on misunderstandings of the processes: selection not design

  • Careful regulation required to address ethical issues

  • Pre-conception screening has place for high-risk couples but might it become the new normal?

  • Genetic testing in utero generates hopes and fears

  • Genetic testing of embryos is likely to continue to expand, creating new choices, possibilities, dilemmas and responsibilities for society and for women

  • Cloning is illegal in UK

  • Reprogenetics of future may involve donated DNA

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