Designer Babies Is it any business of the law

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Designer BabiesIs it any business of the law?

• Professor Mark Henaghan
• Dean, Faculty of Law
• University of Otago

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• You may also perhaps have noticed that midwives
  are expert matchmakers. They know exactly which
  unions between men and women will produce the
  very best children.
• Socrates, 450 BC

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• Dear prospective parent,
• Thank you for considering GenoChoice to plan the
  future well-being of you and your family. My
  name is Dr Elizabeth Preatner, a prenatal
  geneticist and embryologist here at GenoChoice.
  Using our state-of-the-art technologies, you can
  quite possibly ensure that your childs life may
  be free of such diseases as cancer, Alzheimers,
  and heart disease - as well as conditions like
  obesity, aggression and dyslexia. And you can
  even specifically choose genes that may determine
  favourable characteristics in your child.
• http//genochoice.com/
• (Hoax website)

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G340/099 Coneyl Jay, Science Photo Library
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Popular Perceptions

• i think that designer babies are bad. They are
  messing wif mother nature, there will be an
  inbalence in the population with males and
  females. Everyone in the world will be pretty and
  nice looking, there will be no diversity and we
  will all be blonde and blue eyed. wat about us
  ppl who are not desinger babies? we will be ugly
  compared to the perfect ideal desinger babies.
  mother nature shoulnd't be messed with
• http//bionet.at-bristol.org.uk/discussions/englis
  h/messages/5/29.html?1089717538

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Popular Perceptions

• I reckon Designing babies to suit different
  peoples needs is crap. People should be happy
  with what they get given and not mess around with
  Nature. Also people will get spilt in to 2
  groups, rich and poor. Those who CAN design
  their babies and those who cant. Already we
  have people who are rich looking down on the poor
  we dont need it to be even more split down the
  middle. PEOPLE LIVE WITH WHAT YOU HAVE AND
  DONT COMPLAIN. BE GRATEFUL FOR WHAT YOU HAVE
  GOT AND DONT MOAN ABOUT WHAT YOU DONT
  HAVE!!!!!!!!
• http//bionet.at-bristol.org.uk/discussions/englis
  h/messages/5/29.html?1089717538

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Philosophical Objections Jurgen Habermas - The
Future of Human Nature

• PGD is based on a judgement of the quality of
  a human being and therefore expresses a desire of
  genetic optimization. An act that in the end
  leads to the selection of a healthier organism
  issues from the same attitude as a eugenic praxis.

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Philosophical Objections Francis Fukuyama - Our
Posthuman Future

• In the future it should be routinely possible
  for parents to have their embryos automatically
  screened for a wide variety of disorders and
  those with the right genes implanted in the
  mothers womb What we need to do in this case
  is not ban the procedure but regulate it drawing
  red lines not around the procedure itself but
  within its range of possible uses to distinguish
  what is legitimate and what is illegitimate.

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The Science of Designing BabiesPreimplantation
Genetic Diagnosis (PGD)

• IVF

movie
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The Science of PGD

• Biopsy of an eight cell embryo

movie
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The Science of PGD

• Genetic testing
• Review of three major laboratories
• 5 misdiagnoses from 754 live births
• Embryo Selection Transfer and Storage
• Embryo Viability - looks good
• Surplus embryos are frozen and stored
• 100,000 in Australasia - Australian Institute of
  Health and Welfares National Perinatal
  Statistics Unit, 31 December 2003.

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Advantages, Disadvantages and Risks of PGD

• Diagnosis and negative selection before pregnancy
• Increase chance of pregnancy and reduce rate of
  miscarriage
• Not a guarantee of pregnancy
• 25-34 pregnancy per embryo transfer
• No published data on the health of PGD children
  as they grow older

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Public Funding of PGD in New Zealand

• Public Funding for the full cost of up to two
  cycles of IVF/PGD (12,000 per cycle) - fair and
  equitable access
• Serious inherited genetic disorders
• 500,000 per year (40 cycles)
• Chromosomal disorders - maternal age -
  infertility - no public funding

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Maori Perspectives on PGD

• There is a challenge to distill out what is
  distinctively Maori and that will only be part of
  the answer because it doesnt mean to say that we
  all should or even can embrace it
• What if through this kind of process we could
  actually eliminate some of those things that kill
  our people?

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Maori Perspectives on PGD

• If you know that your child was going to have a
  terminal disease that would kill them by the age
  of two or three years and be in absolute pain and
  agony for that two or three years. If I had that
  choice, I wouldnt want to see anybody go through
  that pain, child or not.

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Maori Perspectives on PGD

• It is directed towards addressing lifestyle
  health issues rather than fundamental health
  issues.
• If these sorts of things end up being accessible
  only to those who are wealthy, only to those who
  have resources, only to those who have to a large
  extent personal and political autonomy for
  themselves and their whanau. Then Maori wont be
  included kora teera, there would only be a
  handful.

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Maori Perspectives on PGD

• The way that society had to operate in order to
  survive has to make sure that the collective
  right is the paramount right And now weve got
  to the point where the right of the individual is
  paramount to the right of the collective.

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Ethical Considerations

• Status of human embryo
• Creation of embryo and respect for embryo
• Risks to resultant child - physical, emotional
• Playing God - gift - humanly designed product
• Reproductive liberty - restrict only when there
  is harm to others
• Weeding out rather than selecting in process
  - lives less worthy
• Disrespect and discrimination against disabled
  people

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National Ethics Committee on Assisted Human
Reproductions (NECAHR)

• Sylvia RumballThe guidelines set clear criteria
  to ensure this technology is not misused. Use of
  PGD for non-medical reasons will be prohibited.
  It is not about designing babies. The aim is
  to help people with serious genetic disorders
  have children without the risk of passing on an
  inherited condition.
• Media release, 15 March 2005

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NECAHR Guidelines for PGD

• Familial single gene disorders
• Familial sex-linked disorders
• Familial chromosomal disorders
• 25 or greater risk for 1 and 2
• Serious impairment to the resultant individual
• Huntingtons Disease
• Cystic Fibrosis
• Haemophilia

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Law - Human Assisted Reproductive Technology Act
(HART) 2004

• Established procedures

Advisory CommitteeDirector-General of Health
Minister of Health
Governor General
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Serious Impairment

• High risk of serious abnormality - removed
• It is the responsibility of PGD providers in
  collaboration with a clinical geneticist to
  determine whether a disorder is likely to be
  serious to the offspring
• Late onset susceptibility disorders e.g. BRCA1 or
  2 mutation
• Carries 60-90 risk of developing cancer of the
  breast or ovary
• HFEA (UK) - no licence for late onset conditions

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International Comparisons

• Sweden
• Severe and progressive hereditary diseases
  leading to premature death
• France
• Severe genetic disorder known to be incurable at
  the time of diagnosis
• UK
• Degree of suffering, speed of degeneration,
  extent of impairment
• Australia
• Victoria significantly adversely affect health
• USA
• No regulation

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• Aneuploidy screening approved for non-familial
  chromosomal disorders associated with
• Advanced reproductive age
• Infertility

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HLA Tissue TypingSaviour Siblings

• Sick sibling must suffer from a genetic
  disorder
• Embryo at risk of being affected by a familial
  single gene disorder or familial sex linked
  disorder

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HLA Tissue TypingSaviour Siblings

• Molly and Adam NashFanconi Anaemia

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HLA Tissue TypingSaviour Siblings

• Zain HashmiBeta thalassaemia

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HLA Tissue TypingSaviour Siblings

• Charlie WhitakerDiamond Blackfan Anaemia

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Prohibited Uses of PGD

• Social reasons including sex selection
• S. 11 HART Act 2004
• No selection of embryo on the basis of the sex of
  the embryo

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Sex Selection

• Dahl (Germany) analysed 1,094 people aged 18-45.
  Would they want their first child to be a boy or
  a girl? 14.2 boy, 10.1 girl and 75.7 didnt
  care.If they were having more than one child,
  what would they like? 1 prefer only boys, 1
  only girls, 4 more boys than girls, 3 more
  girls than boys, 30 would like to have as many
  girls as boys and 58 said it was of no
  importance.

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Sex Selection

• Dahl (UK) 1,001 men and women over 18 were asked
  four questions in the UK. 16 would like their
  first child to be a boy, 10 a girl and 73
  didnt care.If given a choice, 3 prefer only
  boys, 2 only girls, 6 more boys than girls, 4
  more girls than boys, 68 would like to have as
  many girls as boys and 16 didnt care.

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Sex Selection

• Alan and Louise Masterton

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Prohibited Uses of PGD

• Altering the genetic constitution of an embryo
• Select embryos with a genetic impairment seen in
  a parent
• A lesbian couple in the US provoked strong
  criticism by deliberately choosing to have a deaf
  baby

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HART Principles

• Health and wellbeing of children born
• Health and dignity of present and future
  generations
• Needs, values and beliefs of Maori considered and
  respected
• The different ethical, spiritual and cultural
  perspectives considered and respected

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HART Processes

• Advisory Committee
• Public Consultation
• Ethics Committee

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• Firstly, the legislator must start by
  endeavouring to make sure that the infant
  population shall enjoy the highest possible state
  of physical health.
• Aristotle, Politics, Book VII

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• Dear God, no! That old-fashioned ways the
  leastEfficient and a great deal too much
  trouble.That sort of things all very well for
  animals.Mankind needs something nobler, that
  suitsHis nobler nature. What you see is
  Sciences solutionOf Natures greatest mystery -
  Evolution
• Goethe, Faust, Part II(Wagners response to the
  creationof a baby in a glass flask)

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• Law is neither wrong or rightLaw is only
  crimesPunished by places and by times.
• W.H.Auden, Law Like Love

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