Thursday, November 24, 2016

The forbidden film about smiles

David Warren writes that this film has been banned from French TV because it might upset some people...

At the centre of the controversy is that smile — that distinctly Down syndrome smile, more haunting than the smile on the Mona Lisa. To those who happen to have eyes to see, it is in itself a moral, and a mystical revelation. I have dreamt, towards Christmas, of the Child in the manger: surely Jesus smiled upon his mother like that.

he also wrote:

as I know from first hand (my younger son is Down’s), they are an extraordinary gift, to those parents and to any siblings, or others, who are brought into contact with a love, a fidelity, an emotional attentiveness, a kindliness, a joy, an innocence, an orb of communicable experience and perception that enlarges and deepens us.


related item: Pearl Buck and her retarded daughter.

Her daughter had PKU, which now is screened for and the retardation prevented with a strict diet.

when I first studied in medical school, doctors recommended all such children be institutionalized. Thanks to the Kennedy family, that has changed, and most are now cared for at home or in home style care homes.

but Down's syndrome is a chromosomal abnormality (they have an extra chromosome). Some wonder if genetic manipulation like CRISPR could "cure" or treat their deficiencies or other genetic causes of disabilities.

JohnsHopkins article discussion.

Nature also discusses the possibility and the ethics of genetically manipulating children.

one problem is that manipulating genes in embryos or growing fetuses is essentially "experimenting" on someone who cannot give their consent.

For minor things, like beauty genes or high IQ, this would be immoral, because if the experiment didn't work, the embryos would be discarded or left to die.

But the dirty little secret is that in today's world that stresses perfection, that most children with Down's syndrome are aborted. Changing their genes at time of diagnosis might give more mothers the courage to oppose the pressure on them to abort and give their baby a chance to live.


additional note: people with Down's syndrome have higher incidence of some disease like Leukemia and Hypothyroidism, and may develop Alzheimer's disease in middle age. All these things are from immune changes from the chromosome. One reason that in the past (i.e. check out any textbooks from the 1940's) was that they tended to die of infections before they reached puberty. Antibiotics changed this.

there is also an increased chance of certain congenital heart defects. In the 1960's they discussed if these children merited open heart surgery, which at the time was rare and risky. Now few would deny the children such treatment.

cross posted to my medicine blog.

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