ETHICS AND EMBRYOS Ruth Deech Gresham Professor of Law 2010

The Embryo At 3 days At 5 days

The First IVF Baby Born in England 1978 Sparked off global debate Became a nursery nurse Has her own child

The Warnock Report 1984: people need principles Moral consensus Regulate Human Fertilisation and Embryology Act 1990 Anne was a member

UK Human Fertilisation & Embryology Authority Established by 1990 statute Licences and monitors clinics, laboratories, IVF, embryo research 21 members appointed after advertisement

Benefits of regulation Protection of the embryo Welfare of the child Record of treatments and donors Control of market forces Answerable and representative Looking ahead

The Realities of Regulation The constraints of the legal framework Resources need to enforce and defend in court The power of the media and images The pressure from politicians

Ethics Human dignity, worth and autonomy The welfare of the potential child Safety Respect for the status of the embryo Saving life through new technology

Embryo research Advances in the treatment of infertility Causes of congenital disease Causes of miscarriage Techniques of contraception Gene and chromosomal abnormalities Development of embryo Serious diseases

Discovery of Stem Cells James Thompson of Madison Wisconsin Obtained stem cells from a human embryo Research funded by Geron Corp Patented by Wisconsin alumi

What are Stem Cells? Derived from early human embryos of a few days’ growth Adult stem cells derived from bone marrow, skin, umbilical cord, blood They are the origin of all our cells Will help us to understand disease Might make cells and tissue for transplantation and renewal

Therapeutic cloning

Stem cells From embryos or adults Totipotent and pluripotent Grow new tissue Bank stem cell lines

Stem Cells and Cures Nerve cells might cure Parkinson’s, Alzheimer’s, spinal cord injury, stroke Embryo cells might help infertility Heart muscle cells for heart disease Blood cells for cancer, leukaemia Skin cells for burns and wounds Bone cells for osteoporosis

The Ethical Debate Catholic Church believes that life starts at conception Cardinal Trujillo announced excommunication for stem cell research

The Different Views Christopher Reeve supported research Jewish position that healing is an obligation Many embryos are left to perish after IVF

Supporters of Research I Nancy Reagan and Michael J. Fox spoke up for it

Supporters of Research II John Kerry (with Mrs. Reeve) debated with President Bush Presidents Ford, Carter and Clinton

Presidential Ban on Funding August 2001 President Bush announces ban on federal funding for stem cell research derived from embryos Existing lines may be used Private research unchecked

Obama lifts ban March 2009 ends Bush ban NIH guidelines July v/policy/2009guideline s.htm

New rules Federal funding allowed for surplus IVF and PGD embryo research Donated after informed consent from donors Pre-existing stem cells may be used if ethically obtained

New limitations No federal funding for research on animal- human embryos Nor for cloned embryos Nor for embryos created for research

California Proposition 71, 2004, state funding for stem cell research California Institute for Regenerative Medicine Independent Citizens’ Oversight Committee Wider than national guidelines

PGD

Preimplantation genetic diagnosis Unite sperm and egg in the laboratory Fertilised egg grows to 8 cell size Remove 1 cell and test for disease Test also for compatibility (HLA)

Screening For beta thalassaemia in Cyprus, Iran For Down’s Syndrome Preimplantation or abortion Breast and bowel cancer genes identified in the embryo

The Hashmi Family Zain suffered from beta thalassaemia and needed blood from a compatible sibling Need an embryo free of the disease Need an embryo that is also compatible

Screening out Disease Cystic fibrosis Down’s Syndrome Beta Thalassaemia (Greek for sea/blood) Sickle Cell disease Breast and Bowel cancer Huntington’s disease and more to come

Disability and screening Society should adapt to the disabled They will be seen as unworthy There will be fewer Should be able to choose a deaf embryo Help and cure does not mean unworthiness Antidiscrimination laws and compassion have increased Every baby should be given the best chance and not predetermined

Choosing the Sex of Your Children The Mastertons had four boys and lost their only girl Should they be allowed to use embryo selection to have another girl?

Boy or Girl? China – 117 boys to 100 girls Right to only one child Girls less likely to be registered

Why so Few Girls? Similar trend in India Ultrasound scanning shows up sex Female foetuses aborted Can attitudes be changed?

Medical Reasons for Sex Selection Haemophilia and Duchenne’s muscular dystrophy affect only males Autism? If there is a family history of this, choose a girl Achieved by preimplantation genetic diagnosis

Non-medical Reasons for Sex Selection Family balancing Rebuild a family after the death of a child Religious, cultural and economic reasons for wanting boys Remove one cell from a 3-day old embryo Analyse the chromosomes and DNA XX = girl, XY = boy

World’s oldest mother Ms Bousada del Lara of Spain Lied that she was 55 to get treatment at 66 Gave birth to twin boys Died of ovarian cancer when they were 2

Fertility For Ever Frozen eggs give hope to young cancer patients

As Fertile as a Man Career women can put their eggs on ice until the time and the man are right

Becoming a Father After Death Diane Blood took her husband’s sperm after his death from meningitis

The power of the Image Diane Blood and her baby Sperm taken from dead father

New British law Animal-hybrid embryos Two mothers

Failure to regulate Nadya Suleman gave birth to octuplets 2009 Likely that 6 embryos were implanted and two split into twins She used all 6 remaining from previous IVF treatment

Two embryo rule Suleman case led to Georgia bill to limit number, but this provision did not pass HFEA limits embryos to two for women under 40 Triplet rate has dropped since 2001

Attitudes to regulation Similarities to medical insurance v National Health Service contrast Welfare of the baby v a woman’s “right” to be a mother Everything that money can buy v medicine in the interests of the community Commodity v dignity

Sperm donation HFEA Code rules; no payment other than expenses; children conceived after 2005 may be given identifying information when they reach 18

Making money

Global (In)Fertility: Anthropological Research on Assisted Reproduction Rayna Rapp, PhD Anthropology, New York University

Anthropological Analysis of PGD, UK

Infertility Treatment in Egypt Local Babies, Global Science By Marcia Inhorn

Ultrasound in Canada Baby’s First Picture by Lisa Mitchell

Technologies of Pregnancy in Israel and Japan

IVF in Israel

Health-Tourism.com IVF Vacation.com

Trends in crude birth rate, world and major areas, *

Inter-country adoption to selected receiving countries, 1995 to 2006

Number of ART cycles reported in US

Twins, by country

Multiple births in US, Twins Triplets Quadruplets Quintuplets or more

Number of ova donations, by country

Daphna Birenbaum-Carmeli & Marcia Inhorn, eds

Destabilizations of Late Modernity (Birenbaum-Carmeli & Inhorn, eds) sex/ reproduction nature/ culture gift/ commodity informal/ formal labor biology/ sociality heterosexuality/homosexuality the local/ the global secular/ sacred

Useful Concepts Moral Pioneers Stratified Reproduction