PREIMPLANTATION GENETIC DIAGNOSIS: an AMBIGUOUS LEGAL STATUS for an AMBIGUOUS MEDICAL and SOCIAL PRA

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PREIMPLANTATION GENETIC DIAGNOSIS an AMBIGUOUS
LEGAL STATUS for an AMBIGUOUS MEDICAL and SOCIAL
PRACTICE

• Judge Christian BYK
• Court of Appeal, Paris
• Secretary General, International Association of
  Law, Ethics and Science

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PGD Coverage Le Monde newspaper

• Prof. Didier Sicard, chairperson of the French
  National Bioethics Consultative Committee
• the practice of PGD is progressively leading to
  the idea that there is a right to give birth to a
  perfect child
• Prof. Pierre Leymarie and Dr Nathalie Leporrier
• Autonomy, non maleficence, beneficence and
  justice are fully respected in the field of PGD

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The respect due to the human embryo an indirect
thread to the legal status of PGD?
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The respect due to the human embryo an indirect
thread to the legal status of PGD?

• Manipulation of the embryos

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The respect due to the human embryo an indirect
thread to the legal status of PGD?

• Manipulation of the embryos
• Power to exclude some genes from our common human
  genetic heritage

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The influence on the performance and regulation
of PGD of existing national regulatory policies
regarding the human embryo
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The influence on the performance and regulation
of PGD of existing national regulatory policies
regarding the human embryo

• The prohibitive approach

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The influence on the performance and regulation
of PGD of existing national regulatory policies
regarding the human embryo

• The prohibitive approach
• Germany Embryo Protection Act 1990

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The influence on the performance and regulation
of PGD of existing national regulatory policies
regarding the human embryo

• The prohibitive approach
• Germany Embryo Protection Act 1990
• Austria Reproductive Medicine Act 1992, article
  9 paragraph 1

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The influence on the performance and regulation
of PGD of existing national regulatory policies
regarding the human embryo

• The prohibitive approach
• Germany Embryo Protection Act 1990
• Austria Reproductive Medicine Act 1992, article
  9 paragraph 1
• Italy law on assisted reproduction technology
  2004

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The restrictive regulatory approach
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The restrictive regulatory approach

• Sweden and Iceland
• only permissible in case of hereditary and
  chromosomal disorders

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The restrictive regulatory approach

• Sweden and Iceland
• only permissible in case of hereditary and
  chromosomal disorders
• Norway and Denmark
• also authorize tissue typing if sibling suffers
  from a serious and untreatable disease

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The restrictive regulatory approach

• Sweden and Iceland
• only permissible in case of hereditary and
  chromosomal disorders
• Norway and Denmark
• also authorize tissue typing if sibling suffers
  from a serious and untreatable disease
• Spain
• only to detect hereditary diseases in order to
  treat them if possible or to prevent their
  transmission

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The restrictive regulatory approach continued

• Portugal
• only for the benefit of parents that could
  appreciate all their implications

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The restrictive regulatory approach continued

• Portugal
• only for the benefit of parents that could
  appreciate all their implications
• Greece
• only to avoid the transmission of a severe
  genetic disease to a child

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The restrictive regulatory approach continued

• Portugal
• only for the benefit of parents that could
  appreciate all their implications
• Greece
• only to avoid the transmission of a severe
  genetic disease to a child
• Belgium
• prohibits research or treatments with eugenic
  purposes including sex selection (with the
  exception of sex related diseases)

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The restrictive regulatory approach continued

• France
• exceptionally used, covers not only hereditary
  disorders but also tissue typing for sibling

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The restrictive regulatory approach continued

• France
• exceptionally used, covers not only hereditary
  disorders but also tissue typing for sibling
• Switzerland
• prohibits the determination of sex for other
  purposes than diagnosis and bans genetic
  predispositions tests other than for medical
  reasons

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The moderate liberal approach

• Netherlands
• no weighty objections to letting the parents
  choose the sex of the future child if the sex is
  known as the result of a procedure carried out
  for medical reason and if this choice does not
  require further intervention

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The moderate liberal approach

• UK
• allow genetic tests for inherited cancer
  susceptibility with the proviso that the broad
  approach decided by the Authority...will not
  limit the discretion of an HFEA Licence Committee
  to consider the individual circumstances of each
  case

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Overview

• national attitudes towards PGD vary considerably
  from country to country

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Overview

• national attitudes towards PGD vary considerably
  from country to country
• some countries prohibit PGD and permit abortion
  while others prohibit abortion but allow PGD

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Do European regulations clarify the legal status
of PGD?
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Do European regulations clarify the legal status
of PGD?

• The Council of Europe
• European Convention on Biomedicine and Human
  Rights a very positive approach to PGD
• But prohibition to use genetic testing to select
  the sex of the future child

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The European Union
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The European Union

• European Charter of Fundamental Rights
• prohibits eugenic practices in particular those
  aiming at the selection of persons

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The European Union

• European Charter of Fundamental Rights
• prohibits eugenic practices in particular those
  aiming at the selection of persons
• European Group of Ethics
• case-by-case approach

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The European Union

• European Charter of Fundamental Rights
• prohibits eugenic practices in particular those
  aiming at the selection of persons
• European Group of Ethics
• case-by-case approach
• Temporary Committee on Human Genetics of the
  European Parliament
• negative opinion

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The evolving indications for PGD a slippery
slope to a new social eugenics?

• The prevention of severe diseases
• Recent developments

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The evolving indications for PGD a slippery
slope to a new social eugenics?

• The moral and regulatory context in which PGD
  developed
• France and the UK
• UK HFEA 22 November 2001 opinion
• France National Bioethics Committee 4th July
  2002 opinion

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The prohibition of eugenic practices
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a) The prohibition of eugenic practices

• November 2003 preliminary survey
• 67 of Western European countries adopted laws
  that prohibited reproductive human cloning (58
  in Eastern European countries)

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a) The prohibition of eugenic practices

• November 2003 preliminary survey
• 67 of Western European countries adopted laws
  that prohibited reproductive human cloning (58
  in Eastern European countries)
• 54 of Western European countries (33 in
  Eastern countries) prohibited research cloning

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b) Accepting PGD as a tool to prevent severe
diseases in offspring

• Couples with a high risk of transmitting a severe
  inherited condition

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b) Accepting PGD as a tool to prevent severe
diseases in offspring

• Couples with a high risk of transmitting a severe
  inherited condition
• IVF screening for chromosome aneuploidy

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To a new type of eugenics?

• Are they good reasons for expanding the
  indications for PGD?

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To a new type of eugenics?

• Are there good reasons for expanding the
  indications for PGD?
• Medical indications

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To a new type of eugenics?

• Are there good reasons for expanding the
  indications for PGD?
• Medical indications
• Non-medical indications

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To a new type of eugenics?

• Are there good reasons for expanding the
  indications for PGD?
• Medical indications
• Non-medical indications
• Gender selection

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To a new type of eugenics?

• Are there good reasons for expanding the
  indications for PGD?
• Medical indications
• Non-medical indications
• Gender selection
• Non-medical traits

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Who decides? is the respect of autonomy
illusory?
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Who decides? is the respect of autonomy
illusory?

• State vs individual

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Conclusion
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Conclusion

• Ambiguity stemming from
• moral value we give to the human embryo
• ability to control genetically our offspring

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Conclusion

• Ambiguity stemming from
• moral value we give to the human embryo
• ability to control genetically our offspring
• Control and limit the use of PGD
• ongoing state of ethical vigilance

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PREIMPLANTATION GENETIC DIAGNOSIS an AMBIGUOUS
LEGAL STATUS for an AMBIGUOUS MEDICAL and SOCIAL
PRACTICE

• Judge Christian BYK
• Court of Appeal, Paris
• Secretary General, International Association of
  Law, Ethics and Science