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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?

Art Work by Gena Glover, former artist in residence,

Genetics Unit Guy’s Hospital, London


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
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

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
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

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
  • 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