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BioEdge: ‘Consult the disabled before enhancing people’ disabled poet advises | BioEdge | Sunday, June 11, 2017 |

BioEdge: ‘Consult the disabled before enhancing people’ disabled poet advises

| BioEdge | Sunday, June 11, 2017 |

‘Consult the disabled before enhancing people’ disabled poet advises

by Michael Cook | 10 Jun 2017 |

Most people think of dwarfism as a serious disability, but many of those who have it are proud of their difference, writes Sheila Black in the New York Times. Ms Black, a prize-winning poet, and two of her three children have X-linked hypophosphatemia, a condition which leads to short stature and crooked legs and other handicaps. Now scientists are on the brink of a cure. But after a lifetime of experience, she says “It is hard to explain to anyone who does not have a condition like mine why this feels so bittersweet. But it does.”

Certainly a cure would bring many social and personal benefits – “But that does not change the fact that to be human often entails finding ways to make what appears a disadvantage a point of strength or pride.”

Ms Black points out that CRISPR, the gene-editing tool could be used to create enhanced humans. This is an ethically fraught possibility which calls for careful study. A future in which mankind might be divided into superior and inferior beings is terrifying. In thinking through these issues, she says that disabled people need to be consulted. “Who better to consider such questions than those of us who have lived with being different?”

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Sunday, June 11, 2017

We may have over-egged today’s newsletter with stories about surrogacy, but they all appeared this week with a common theme: what about the mothers? The accepted wisdom is that most mothers are well compensated and give up the child happily.

Not always.

Take the case in England of a surrogate mother who has just been jailed for 22 weeks for stalking a judge and a court welfare officer. The terrified family court judge had awarded the child she bore to the commissioning gay couple even though Lian Harris had changed her mind and wanted to keep it.

Ms Harris snapped.

Over a year she harassed the judge, protested outside the house of politicians and lawyers, unfurled a banner on Westminister Cathedral saying “Family courts do evil”, attempted to fasten herself to the second-floor balcony of the social worker’s home, and tried to organised harassment on Facebook, amongst other stunts.

Not a happy camper.

Ms Harris is said to be an exceptional case. But how do we know? Where are the longitudinal studies to prove that surrogate mothers live happily ever after once they surrender the child they carried for nine months?