My ‘designer’ baby

1. My ‘designer’ baby

2. Should we test our embryos or leave nature to take its own course?

3. Stephen Hawking • Hawking has a form of Motor Neuron Disease, a condition that has progressed over the years and has left him almost completely paralyzed. • He gradually lost the use of his arms, legs, and voice, and is now almost completely paralyzed. • He describes himself as "lucky" despite his disease

4. Michael J Fox • Fox was a successful actor, winning several Golden Globes and Emmys for his work • Fox was diagnosed with Parkinson’s Disease in 1991 (a degenerative disease of the brain that often impairs motor skills, speech, and other functions.) • He disclosed his condition to the public in 1998, and as the symptoms of his disease worsened he semi-retired from acting in 2000.

5. Question • Would these people change the way they are in order to live a ‘normal’ lifestyle? • Stephen Hawking is a genius who has still managed to do what he loves and become a phenomenon in his field. • Michael J Fox has done extensive work to promote awareness of this disease and raise money for research.

6. Who has the right to decide? • Who should be allowed to decide which traits and characteristics are ‘desirable’ and which aren’t? • The parents • Doctors • The Government

7. Britain debates “designer babies” for IVF couples Posted Mar 24, 2005 Fri 29 Apr 2005 Creation of designer babies for treatment is lawful, rule Lords Will we create GM humans? Monday, 6 September, 2004, Go ahead for 'designer baby' Thursday, 24 March, 2005, 09:06 GMT Parents 'could pick babies' sex' GENETICALLY ENGINEERED HUMANS Wednesday, 21 July, 2004, 17:33 GMT 18:33 UK 'Designer baby' rules are relaxed Designer babies - the ethical debate

8. Engineering 124; Spring 2003 PGD: Genetic testing performed prior to embryo transfer “The debate [around PGD] has been building since the late 1980s, when doctors at London's Hammersmith Hospital learned how to tease a cell from a 3-day-old embryo and study its chromosomes for gender.” (Zitner 2002) • Adds $2000 to IVF • Reduces rate of miscarriages from 23% to 10% • Does not increase chance of pregnancy

9. Commonly, more than 100 diseases can be detected through testing, including… • Hemophilia A • Muscular dystrophy • Tay-Sachs disease • Cystic fibrosis • Down Syndrome Removal of one cell for testing Engineering 124; Spring 2003

10. Viable and Desirable? “This information is helping parents choose which embryos they want--and which to reject as unhealthy, or merely undesirable.” (Zitner 2002) Engineering 124; Spring 2003

11. Disease Free Embryos Frozen in storage Donated to infertile couples Donated to stem cell research/usage Disease Carrying Embryos Donated to research Discarded Undesirable Embryos Engineering 124; Spring 2003

12. International Policies on PGD • Banned PGD for ALL usages • Used to select child’s gender only when there is medical need • Clinics set policies; no federal or state restrictions

13. Engineering 124; Spring 2003 Issues … weighing the goal of pregnancy and live birth against the medical and moral risks of multiple gestation. …requires society to make a decision on when life begins. …using PGD inherently makes assumptions about the quality of life, challenging basic tenets of society such as equality.

14. Address the suffering of the mother due to her inability to have a child “naturally” “When having children, people…often roll the genetic dice and hope for the best. With embryo sorting, "they can start their pregnancy on Day One with a commitment to continuing it." (Zitner 2002) PGD can save parents massive heartbreak and financial strain Address the view of the potential child Will the child have adequate support and a stable home? If there are multiple fetuses, will the children receive adequate care/attention? “[PGD has] the goal of stopping deadly genetic diseases such as Tay-Sachs and Huntington’s. This research has growing support because it can save children from enormous suffering and early death.” (Wagner 2003) Ethics Some ethicists would be in favor of IVF and PGD as long as the decision is loving and promotes positive relationships.

15. Rights Based Ethics Embryos are mass-produced, screened, discarded and used in experiments: are they products or people with rights? • Based on John Locke’s principles, all people have the right (in America) to “life, liberty and the pursuit of happiness.” • What becomes of the idea that everyone is created equal if you start designing children? • Loss of autonomy because of a necessity to be competitive in society • Inherently discriminatory; makes assumptions about quality of life • "Most people with disabilities rate their quality of life as much higher than other people think. People make the decision [to reject embryos] based on a prejudice that having a disability means having a low quality of life.“

16. Did you see…? • Why was the younger sister, Anna born? • What technology was used in her conception? • The term used to describe someone in Anna’s situation is a ‘Saviour Sibling’

17. Could it really happen? • If a child is suffering from certain inherited diseases, the solution could be a transplant of ‘stem cells’ from a sibling (brother or sister) • These can be collected from the sibling’s umbilical cord, bone marrow, or other tissue. • This is legal in the UK

18. However • It is NOT LEGAL to create a saviour sibling to donate organs, or other tissues. • So ‘Anna’ could NOT be asked to donate a kidney in the UK. • Why do you think the law in the UK has made this decision?

20. I had a 'saviour sibling' to cure my desperately ill son - but now I've found out my newborn daughter can't save his life Donna Zammit's first, tearful words to her husband Thomas after their baby daughter was born six weeks ago were: "I did this for Jamie.“ Strange words, but then baby Donatella was conceived with the primary intention of her becoming a "saviour sibling" to her nine-year-old brother Jamie, who suffers from the rare genetic blood disorder Fanconi anaemia. Their unbridled optimism that Donatella might provide their son with a bone marrow transplant and in doing so save his life has been cruelly short-lived.

22. How might medical scientists define an embryo? • A fertilised egg from 14 days to 8 weeks. • The Human Fertilisation and Embryology Act defines an embryo as a live human embryo where fertilisation is complete. or • An egg in the process of fertilisation.

23. Describe UK law relating to the use of human embryos in research. • Human cloning is not allowed. • Therapeutic cloning is allowed. • Licences must be provided by the HFEA. • Research allowed up to 14 days of development. • Frozen embryos can only be stored for up to 5 years.

24. What arguments might scientists use to support using human embryos in research? • A human embryo gives a more accurate picture of how the illness/treatment may affect a person. • The embryo is not a human being but only a collection of cells. • It has no self-awareness, thoughts, internal organs etc. Therefore, material can be extracted to benefit others. • The research could help to eliminate diseases such as Parkinson’s, Alzheimer’s and even cancer.