#1730 - Pre Implantation Genetic Diagnosis And Genetic Enhancement - Medical Law

Pre-implantation genetic diagnosis and Genetic Enhancement

When can PGD be used?

• HEFA 1990 Sch 2 1ZA as amended by HEFA 2008:(1) A licence under paragraph 1 cannot authorise the testing of an embryo, except for one or more of the following purposes—E+W+S+N.I.

  • (a)establishing whether the embryo has a gene, chromosome or mitochondrion abnormality that may affect its capacity to result in a live birth,

  • (b) to establish whether it has a gene, chromosome or mitochondrion abnormality

    • Where there is a particular risk that it will have so

    • AND (2) the Authority is satisfied

      • (a)in relation to the abnormality of which there is a particular risk, and

      • (b)in relation to any other abnormality for which testing is to be authorised under sub-paragraph (1)(b),

        • that there is a significant risk that a person with the abnormality will have or develop a serious physical or mental disability, a serious illness or any other serious medical condition.

  • (c) to establish the sex of the embryo

    • Where there is a particular risk of

      • (i)a gender-related serious physical or mental disability,

      • (ii)a gender-related serious illness, or

      • (iii)any other gender-related serious medical condition,

    • (3)For the purposes of sub-paragraph (1)(c), a physical or mental disability, illness or other medical condition is gender-related if the Authority is satisfied that—

      • (a)it affects only one sex, or

      • (b)it affects one sex significantly more than the other.

  • (d) to create a saviour sibling

    • Where the sibling suffers from a serious medical condition which could be treated by

      • Umbilical cord blood stem cells

      • Bone marrow

      • Or other tissue

    • To establish whether the tissue of any resulting child using the gametes of the parents would be compatible with that of the sibling

  • (e)where there is uncertainty about whose gametes were used in the embryo’s creation, to find out

Should PGD be permitted?

• To select against disability

  • Would seem that if a woman can abort a foetus with a disability, should also be able to select one

    • But if couple choose to discard one with cystic fibrosis, then what does this say about society’s attitude towards cystic fibrosis?

      • Perhaps we’re saying that a life with cystic fibrosis is not worth living?

      • Asch and Wasserman: Perhaps this reveals something about society which encourages the use of tests for disabilities that is the most concerning.

    • Mahowland: Might be able to both try and ensure that someone with disabilities is not disadvantaged, while seeking to prevent disabilities where possible

      • In this sense we dislike the disability characteristic, but not the person with it

      • Me: unfortunately, we seem to fall into a fallacy here – b/c the embryo is selected against, they are never born at all – so we are saying their life is not worth living.

• To select for a disability?

  • e.g. the Deaf Lesbians – said child would more easily learn deaf sub-culture and fit in with their lifestyle more if also deaf.

  • Savulescu:

    • Have they harmed that child? Is that child worse off than it would otherwise have been (that is, if they had selected a different embryo)?

      • No—another (different) child would have existed. The deaf child is harmed by being selected to exist only if his or her life is so bad it is not worth living.

      • Deafness is not that bad. Because reproductive choices to have a disabled child do not harm the child,

        • couples who select disabled rather than non-disabled offspring should be allowed to make those choices, even though they may be having a child with worse life prospects

  • John Stuart Mills – some people live better lives than others – there are higher pleasures – but people need to be free to experiment to find what works best for them.

• To select sex?

  • This is specifically permitted under Para 1ZA, but only to avoid sex related disorders

    • It does not permit selection based on family balancing or to replace a dead child with one of the same sex

  • Objections

    • Demographic impact

      • In some countries (e.g. China), the ratio of boys-to-girls is 107:100, which is said to be caused by the abortion of girls from families that want a son for societal reasons.

        • If we allowed sex selection, we might find it harder to criticise other countries where this occurs in an unacceptable way

      • BUT there is no reason to think such a skew would occur in the UK, and it is perfectly possible that couples would prefer girls to boys

        • We’d only have a problem if sex selection was widespread, which it is unlikely to be

    • Psychological impacts

      • Some children might feel that they were selected only on the basis of their sex and suffer harm from this

        • BUT this is speculation....

    • Sex discrimination

      • Maybe we’re encourages sexist beliefts or attitudes by allowing parents to choose the sex of their kid

• “Trivial” reasons

  • Can we select on the basis of eye colour or hair?

    • Harris: Either such traits are important or they are not. If they are not important, who not let people choose?

      • And if they are important, why leave them to chance?

  • Scott: Parental interests not seriously affected by hair colour selection, whereas they might be for disabilities where they feel they would not have the resources to cope

  • Me: Is fairly value neutral – but we would discourage diversity w/o welfare increases

    • We would also perhaps lead to the over-commercialisation of children – diminish the significance of the event

• Saviour siblings?

  • Quintavalle v HEFA [2005]: C challenged a decision by the HFEA to grant a license to HLA typing within limited circumstances during IVF, which would enable embryos to be fertilised and then tested to see whether the subsequent baby would develop stem cells which would help cure the older brother, with the aim of producing such a “saviour sibling” and harvesting the stem cells from the umbilical cord after birth.

    • Held

      • The term "suitable" in paragraph 1(1)(d) fell to be construed in the context of the scheme of the Act and the background against which it had been enacted,

        • namely that Parliament had intended to define the licensing power of the authority in broad terms and to entrust it to decide which practices were ethically acceptable,

          • subject to the prohibited matters in section 3(3) and Parliament's regulatory powers;

      • The authority had not been precluded from interpreting suitability as including the selection of an embryo with a characteristic that a woman desired

        • accordingly, the authority had power to authorise both PGD and HLA typing as activities

          • to determine the suitability of an embryo for implantation within the meaning of paragraph.

  • The HEFA 2008 para 1ZA(d) has made it clear that this is now permissible

    • But is subject to guidance from the HEFA. The clinic should consider, amongst other things:

      • The degree of suffering for the affected child from their condition

        • The speed of degeneration

        • Their prognosis and any treatment options available

        • The availability of alternative sources of tissue or effective therapy now or in the future

      • Any possible risks associated with the embryo biopsy

        • Along with likely long term emotional and psychological implications

        • Whether surgery will be required, and whether there might be multiple operations

      • With consideration to the family circumstances of the people seeking treatment

        • Their previous reproductive experience

        • Their views and the affected child’s view of the condition

        • The likelihood of success, including the likely number of cycles needed and the likely outcome of treatment for the affected child

  • Criticisms

    • Child being used as a means to an end

      • BUT...

        • To save the life of a sibling is beneficial, or at least not harmful, to the saviour sibling itself

        • It is extremely unlikely that parents would see the baby as a source of tissue and wish to discard it after use

          • – and steps could be taken before treatment to ensure this was not the case.

    • Possible future psychological difficulties

      • i.e. child may see themselves only as being created to assist the sibling, may be danges and harm from this realisation

        • Harris: guesses about possible emotional harms for saviour sibling don’t justify denying treatment that could save lives.

Genetic Enhancement

Technology is still a long way off...

• The difference from selecting an embryo

  • PGD already exists

    • Which allows us to diagnose conditions, but doesn’t currently allow us to determine genetic traits such as intelligence, strength, hair colour etc.

      • Nor does it allow us to specifically enhance an embryo – while we might select against it in favour of another one, we cannot modify the existing embryo

  • Advantages to enhancement over selection

    • Less wasteful in terms of embryos, provided that technology is successful

      • No need to discard embryos which might be considered “life” – ensuring that embryo is born, albeit with the desired traits

    • Roache and Bostrom:

      • Certain limits on selection – necessarily limited by the genetics of the parents – can only work within this framework

      • Enhancement suggests that we can break from these limiting factors.

Drawing the Line between Enhancement and Treatment

• Colleton:

  • At most basic level

    • Treatment/Therapy = Intervention which restores the child to “normal”

    • Enhancement = Any increase beyond the “normal” level

  • Enhancement is wrong, but therapy is okay.

• But what is normal?

  • Roache and Bostrom:

    • Two examples – suppose being 2 standard deviations below average is defined as mentally subnormal

      • Embryo X has a harmful genetic mutation, which will case Embryo X’s potential cognitive...