Genetics – our reproductive futures?

Art Work by Gena Glover, former artist in residence, Genetics Unit Guy’s Hospital, London

The X and Y chromosomes magnified many times

“Celebrity clone dies of drug overdose”

Nature, 18 February, 2003

Determining the Sex of the Foetus

• Ultrasound scan at 20 weeks• Amniocentesis (risk of miscarriage)• 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

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

Sex selection: in the UK• ‘Probe ordered into “preferred sex” abortions’

(Independent, 23 Feb 2012)• ‘Clinics “offer sex-selection abortions”’

(Nursing Times, 23 Feb 2012)• ‘Society needs to realise the horrific

consequences of sex-selective abortions’ (Guardian, 24 Feb 2012)

• ‘Greedy doctors, and why I despair for British Asian women who abort female foetuses’ (Daily Mail, 24 Feb 2012)

Pre-natal Diagnosis• Helping to have a normal baby?• Or…

– Generating anxiety?– ‘Slippery slope’ to abortion;– Where to draw the line?– Regulating gene capital? (female)– Commodifying children?– Eugenics?

• Support Groups used to generate medical knowledge that enables genetic tests that may lead to extinction

Pre-implantation genetic diagnosis (PGD)

Saviour Siblings

• Jamie Whitaker (b. 2003) as a “saviour sibling” to his brother Charlie (who has Diamond Blackfan Anaemia)

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

Saviour Siblings

• Zain Hashmi (suffers from Thalassaemia)

• Raj and Shahana Hashmi given permission (2002) to use PGD to select embryos that are a match to Zain

Saviour Siblings• 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

Why is PGD controversial?

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 that will survive, rather than a “designer baby”.

• PGD is a technology of selection, not design

The realities of PGD

• As with IVF – it is an arduous physical process for women

• New reproductive possibilities

• New risks and responsibilities

Stem cell research

Conclusion

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

• 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