Designer BabiesDesigner BabiesIs it any business of the law?Is it any business of the law?

Professor Mark HenaghanProfessor Mark Henaghan

Dean, Faculty of LawDean, Faculty of Law

University of OtagoUniversity of Otago

““You may also perhaps have noticed that You may also perhaps have noticed that midwives are expert matchmakers. They midwives are expert matchmakers. They know exactly which unions between men and know exactly which unions between men and women will produce the very best children.”women will produce the very best children.”

Socrates, 450 BCSocrates, 450 BC

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

http://genochoice.com/http://genochoice.com/(Hoax website)(Hoax website)

G340/099 Coneyl Jay, Science Photo LibraryG340/099 Coneyl Jay, Science Photo Library

Popular PerceptionsPopular Perceptions

““i think that designer babies are bad. They are i think that designer babies are bad. They are messing wif mother nature, there will be an messing wif mother nature, there will be an inbalence in the population with males and females. inbalence in the population with males and females. Everyone in the world will be pretty and nice Everyone in the world will be pretty and nice looking, there will be no diversity and we will all be looking, there will be no diversity and we will all be blonde and blue eyed. wat about us ppl who are not blonde and blue eyed. wat about us ppl who are not desinger babies? we will be ugly compared to the desinger babies? we will be ugly compared to the perfect ideal desinger babies. mother nature perfect ideal desinger babies. mother nature shoulnd't be messed with”shoulnd't be messed with”

http://bionet.at-bristol.org.uk/discussions/english/messages/5/29.html?1089717538http://bionet.at-bristol.org.uk/discussions/english/messages/5/29.html?1089717538

Popular PerceptionsPopular Perceptions““I reckon “Designing” babies to suit different I reckon “Designing” babies to suit different people’s needs is crap. People should be happy with people’s needs is crap. People should be happy with what they get given and not mess around with what they get given and not mess around with Nature. Also people will get spilt in to 2 groups, Nature. Also people will get spilt in to 2 groups, rich and poor. Those who CAN design their babies rich and poor. Those who CAN design their babies and those who can’t. Already we have people who and those who can’t. Already we have people who are rich looking down on the poor we don’t need it are rich looking down on the poor we don’t need it to be even more split down the middle. PEOPLE; to be even more split down the middle. PEOPLE; LIVE WITH WHAT YOU HAVE AND DON’T LIVE WITH WHAT YOU HAVE AND DON’T COMPLAIN. BE GRATEFUL FOR WHAT YOU COMPLAIN. BE GRATEFUL FOR WHAT YOU HAVE GOT AND DON’T MOAN ABOUT WHAT HAVE GOT AND DON’T MOAN ABOUT WHAT YOU DON’T HAVE!!!!!!!!”YOU DON’T HAVE!!!!!!!!”

http://bionet.at-bristol.org.uk/discussions/english/messages/5/29.html?108971753http://bionet.at-bristol.org.uk/discussions/english/messages/5/29.html?10897175388

Philosophical ObjectionsPhilosophical Objections Jurgen Habermas - Jurgen Habermas - The Future of Human NatureThe Future of Human Nature

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

Philosophical ObjectionsPhilosophical Objections Francis Fukuyama - Francis Fukuyama - Our Posthuman FutureOur Posthuman Future

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

The Science of “Designing Babies”The Science of “Designing Babies”Preimplantation Genetic Diagnosis Preimplantation Genetic Diagnosis

(PGD)(PGD)

IVFIVF[movie][movie]

The Science of PGDThe Science of PGD

Biopsy of an eight cell embryoBiopsy of an eight cell embryo

[movie][movie]

The Science of PGDThe Science of PGD

Genetic testingGenetic testing Review of three major laboratoriesReview of three major laboratories

– 5 misdiagnoses from 754 live births5 misdiagnoses from 754 live births Embryo Selection Transfer and StorageEmbryo Selection Transfer and Storage Embryo Viability - “looks good”Embryo Viability - “looks good” Surplus embryos are frozen and storedSurplus embryos are frozen and stored 100,000 in Australasia - Australian Institute of 100,000 in Australasia - Australian Institute of

Health and Welfare’s National Perinatal Statistics Health and Welfare’s National Perinatal Statistics Unit, 31 December 2003.Unit, 31 December 2003.

Advantages, Disadvantages and Advantages, Disadvantages and Risks of PGDRisks of PGD

Diagnosis and negative selection before Diagnosis and negative selection before pregnancypregnancy

Increase chance of pregnancy and reduce Increase chance of pregnancy and reduce rate of miscarriagerate of miscarriage

Not a guarantee of pregnancyNot a guarantee of pregnancy 25-34% pregnancy per embryo transfer25-34% pregnancy per embryo transfer No published data on the health of PGD No published data on the health of PGD

children as they grow olderchildren as they grow older

Public Funding of PGD in New Public Funding of PGD in New ZealandZealand

Public Funding for the full cost of up to two Public Funding for the full cost of up to two cycles of IVF/PGD ($12,000 per cycle) - cycles of IVF/PGD ($12,000 per cycle) - “fair and equitable” access“fair and equitable” access

““Serious inherited genetic disorders”Serious inherited genetic disorders” $500,000 per year (40 cycles)$500,000 per year (40 cycles) Chromosomal disorders - maternalChromosomal disorders - maternal

age - infertility - no public funding age - infertility - no public funding

Maori Perspectives on PGDMaori Perspectives on PGD

““There is a challenge to distill out what is There is a challenge to distill out what is distinctively Maori and that will only be distinctively Maori and that will only be part of the answer because it doesn’t mean part of the answer because it doesn’t mean to say that we all should or even can to say that we all should or even can embrace it”embrace it”

““What if through this kind of process we What if through this kind of process we could actually eliminate some of those could actually eliminate some of those things that kill our people?”things that kill our people?”

Maori Perspectives on PGDMaori Perspectives on PGD

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

Maori Perspectives on PGDMaori Perspectives on PGD

““It is directed towards addressing lifestyle health It is directed towards addressing lifestyle health issues rather than fundamental health issues.”issues rather than fundamental health issues.”

““If these sorts of things end up being accessible If these sorts of things end up being accessible only to those who are wealthy, only to those who only to those who are wealthy, only to those who have resources, only to those who have to a large have resources, only to those who have to a large extent personal and political autonomy for extent personal and political autonomy for themselves and their whanau. Then Maori won’t themselves and their whanau. Then Maori won’t be included kora teera, there would only be a be included kora teera, there would only be a handful.”handful.”

Maori Perspectives on PGDMaori Perspectives on PGD

““The way that society had to operate in The way that society had to operate in order to survive has to make sure that the order to survive has to make sure that the collective right is the paramount right … collective right is the paramount right … And now we’ve got to the point where the And now we’ve got to the point where the right of the individual is paramount to the right of the individual is paramount to the right of the collective.”right of the collective.”

Ethical ConsiderationsEthical Considerations

Status of human embryoStatus of human embryo Creation of embryo and respect for embryoCreation of embryo and respect for embryo Risks to resultant child - physical, emotionalRisks to resultant child - physical, emotional Playing God - gift - humanly designed productPlaying God - gift - humanly designed product Reproductive liberty - restrict only when there is Reproductive liberty - restrict only when there is

harm to othersharm to others ““Weeding out” rather than “selecting in” process - Weeding out” rather than “selecting in” process -

lives less worthylives less worthy Disrespect and discrimination against disabled Disrespect and discrimination against disabled

peoplepeople

National Ethics Committee on National Ethics Committee on Assisted Human Reproductions Assisted Human Reproductions

(NECAHR)(NECAHR) Sylvia RumballSylvia Rumball

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

Media release, 15 March 2005Media release, 15 March 2005

NECAHR Guidelines for PGDNECAHR Guidelines for PGD

1.1. Familial single gene disordersFamilial single gene disorders

2.2. Familial sex-linked disordersFamilial sex-linked disorders

3.3. Familial chromosomal disordersFamilial chromosomal disorders 25% or greater risk for 1 and 225% or greater risk for 1 and 2 ““Serious impairment” to the resultant individualSerious impairment” to the resultant individual Huntington’s DiseaseHuntington’s Disease Cystic FibrosisCystic Fibrosis HaemophiliaHaemophilia

Law - Human Assisted Reproductive Law - Human Assisted Reproductive Technology Act (HART) 2004Technology Act (HART) 2004

Established proceduresEstablished procedures

Advisory CommitteeDirector-General of Health

Minister of Health

Governor General

““Serious Impairment”Serious Impairment”

““High risk of serious abnormality” - removedHigh risk of serious abnormality” - removed ““It is the responsibility of PGD providers in It is the responsibility of PGD providers in

collaboration with a clinical geneticist to collaboration with a clinical geneticist to determine whether a disorder is likely to be determine whether a disorder is likely to be serious to the offspring”serious to the offspring”– Late onset susceptibility disorders e.g. BRCA1 or 2 Late onset susceptibility disorders e.g. BRCA1 or 2

mutationmutation

– Carries 60-90% risk of developing cancer of the breast Carries 60-90% risk of developing cancer of the breast or ovaryor ovary

HFEA (UK) - no licence for late onset conditionsHFEA (UK) - no licence for late onset conditions

International ComparisonsInternational Comparisons SwedenSweden

– Severe and progressive hereditary diseases leading to Severe and progressive hereditary diseases leading to premature deathpremature death

FranceFrance– Severe genetic disorder known to be incurable at the Severe genetic disorder known to be incurable at the

time of diagnosistime of diagnosis UKUK

– Degree of suffering, speed of degeneration, extent of Degree of suffering, speed of degeneration, extent of impairmentimpairment

AustraliaAustralia– Victoria: significantly adversely affect healthVictoria: significantly adversely affect health

USAUSA– No regulationNo regulation

Aneuploidy screening approved for non-Aneuploidy screening approved for non-familial chromosomal disorders associated familial chromosomal disorders associated withwith– Advanced reproductive ageAdvanced reproductive age– InfertilityInfertility

HLA Tissue TypingHLA Tissue TypingSaviour SiblingsSaviour Siblings

Sick sibling must suffer from a Sick sibling must suffer from a

“genetic disorder”“genetic disorder” Embryo at risk of being affected by a Embryo at risk of being affected by a

familial single gene disorder or familial sex familial single gene disorder or familial sex linked disorderlinked disorder

HLA Tissue TypingHLA Tissue TypingSaviour SiblingsSaviour Siblings

Molly and Adam NashMolly and Adam NashFanconi AnaemiaFanconi Anaemia

HLA Tissue TypingHLA Tissue TypingSaviour SiblingsSaviour Siblings

Zain HashmiZain HashmiBeta thalassaemiaBeta thalassaemia

HLA Tissue TypingHLA Tissue TypingSaviour SiblingsSaviour Siblings

Charlie WhitakerCharlie WhitakerDiamond Blackfan AnaemiaDiamond Blackfan Anaemia

Prohibited Uses of PGDProhibited Uses of PGD

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

sex of the embryosex of the embryo

Sex SelectionSex Selection

Dahl (Germany) analysed 1,094 people Dahl (Germany) analysed 1,094 people aged 18-45. Would they want their first aged 18-45. Would they want their first child to be a boy or a girl? 14.2% boy, child to be a boy or a girl? 14.2% boy, 10.1% girl and 75.7% didn’t care.10.1% girl and 75.7% didn’t care.If they were having more than one child, If they were having more than one child, what would they like? 1% prefer only boys, what would they like? 1% prefer only boys, 1% only girls, 4% more boys than girls, 3% 1% only girls, 4% more boys than girls, 3% more girls than boys, 30% would like to more girls than boys, 30% would like to have as many girls as boys and 58% said it have as many girls as boys and 58% said it was of no importance.was of no importance.

Sex SelectionSex Selection

Dahl (UK) 1,001 men and women over 18 Dahl (UK) 1,001 men and women over 18 were asked four questions in the UK. 16% were asked four questions in the UK. 16% would like their first child to be a boy, 10% would like their first child to be a boy, 10% a girl and 73% didn’t care.a girl and 73% didn’t care.If given a choice, 3% prefer only boys, 2% If given a choice, 3% prefer only boys, 2% only girls, 6% more boys than girls, 4% only girls, 6% more boys than girls, 4% more girls than boys, 68% would like to more girls than boys, 68% would like to have as many girls as boys and 16% didn’t have as many girls as boys and 16% didn’t care.care.

Sex SelectionSex Selection

Alan and Louise MastertonAlan and Louise Masterton

Prohibited Uses of PGDProhibited Uses of PGD

Altering the genetic constitution of an Altering the genetic constitution of an embryoembryo

Select embryos with a genetic impairment Select embryos with a genetic impairment seen in a parentseen in a parent

A lesbian couple in the US provoked strong A lesbian couple in the US provoked strong criticism by deliberately choosing to have a criticism by deliberately choosing to have a deaf babydeaf baby

HART PrinciplesHART Principles

Health and wellbeing of children bornHealth and wellbeing of children born Health and dignity of present and future Health and dignity of present and future

generationsgenerations Needs, values and beliefs of Maori Needs, values and beliefs of Maori

considered and respectedconsidered and respected The different ethical, spiritual and cultural The different ethical, spiritual and cultural

perspectives considered and respectedperspectives considered and respected

HART ProcessesHART Processes

Advisory CommitteeAdvisory Committee Public ConsultationPublic Consultation Ethics CommitteeEthics Committee

““Firstly, the legislator must start by Firstly, the legislator must start by endeavouring to make sure that the infant endeavouring to make sure that the infant population shall enjoy the highest possible population shall enjoy the highest possible state of physical health.”state of physical health.”

Aristotle,Aristotle, Politics Politics, Book VII, Book VII

““Dear God, no! That old-fashioned way’s the leastDear God, no! That old-fashioned way’s the leastEfficient and a great deal too much trouble.Efficient and a great deal too much trouble.That sort of thing’s all very well for animals.That sort of thing’s all very well for animals.Mankind needs something nobler, that suitsMankind needs something nobler, that suitsHis nobler nature. What you see is Science’s solutionHis nobler nature. What you see is Science’s solutionOf Nature’s greatest mystery - Evolution”Of Nature’s greatest mystery - Evolution”

Goethe, Goethe, FaustFaust, Part II, Part II(Wagner’s response to the creation(Wagner’s response to the creation

of a baby in a glass flask)of a baby in a glass flask)

““Law is neither wrong or rightLaw is neither wrong or rightLaw is only crimesLaw is only crimesPunished by places and by times.”Punished by places and by times.”

W.H.Auden, “Law Like Love”W.H.Auden, “Law Like Love”