Wednesday, 30 May 2018

Book Review: Blood Matters by Masha Gessen

4 stars. Loads of interesting information, quite a lot of science content and quite well explained with some weak spots. Unpleasant emphasis on Israel. 
  • Lots of interesting case studies from Amish and Mennonite communities:
    •  The Amish don't reject medicine because it's not a distraction from community, unlike TV. That said, they don't have insurance and use community crowdfunding,
    • They have extremely high carrier frequencies of some diseases e.g. Old Order Mennonites have a 10% carrier frequency of maple syrup disease, and glutaric aciduria type 1 hits the Amish
    • VERY inbred. There's a case study of a family where the parents are double first cousins -- their mothers were sisters and their fathers were brothers. Out of their 8 or 9 children, 4 had Maple Syrup Urine Disease and 2 had Severe Combined Immunodeficiency. Does sound very sad though, because a lot of these families lost loads of children.
    • unfortunately the author was then very irritating, repeatedly, by calling leucine 'lucene'. Is it the ...Israeli spelling?? It was interesting though that a treatment for a kid who's breaking down all their protein stores and has overly high levels of amino acids is to give them 4000 calories a day IV to force their body to make protein.
    • Interesting story of domino transplants with MSUD patients, or 'gene therapy by liver transplant' even though it doesn't really involve genes at all. You put a healthy liver from a cadaver into the MSUD patient, which gives them enough of the enzyme to get by, and then put the MSUD patient's liver into a man dying of liver cancer, who had enough of the enzyme in the rest of him to make it work. 
    • Some kind of insane seizure disorder: 'the babies seemed to start seizing in utero and after birth continue to have thousands of seizures a day''
    • This quote from a doctor treating these populations using genetic medicine: 'Gene therapy will be practised one patient at a time'. Which isn't great for efficiency but I guess makes sense since (nearly) everyone is different genetically.

    • Has a long quote from some scientist saying cystic fibrosis and other diseases got high carrier frequencies, not from selective advantage for heterozygotes as I've heard in lectures. I'll hold the boat on that one.

    • Selective abortion for disability
      • apparently Russian women have on average over 2 abortions each in a lifetime
      • Someone called having a deaf child 'such a burden', which wasn't very nice
      • Wrongful birth lawsuits mean that doctor must pay parents of children with a defect that could've been caught in utero or pre-implantation So doctors can't intentionally give someone a child with achondroplasia, deafness, Downs even though some people want that e.g. as company for their kid with the same condition.

    • Quotes from a visit to a genetic testing/ancestry company:
      • 'DNA-testing equipment tends to fall into two categories: things that look like printers and things that look like toasters'
      • 'You stopped that because it was kind of creepy?' I asked.   'No', Amy smiled, clearly confused. 'Because our craniometer broke.' (about the company having skull measurements of people).

    • Genetics of behaviour: 
      • scientists have domesticated wolves, foxes, minks, wild rats by breeding them to be friendlier
      • if you put stranger rodents with the MAOA gene knocked out in a cage together, you'll be collecting dead bodies every day. They actively kill each other rather than just posturing in fights.

    • Section on intelligence VERY annoying because of (a) Jewish supremacy (b) physicist supremacy
      • She says of the common Ashkenazi Jew disease Gaucher's disease: 'Five of the patients were physicists' (out of 322 patients studied), to show that they're sooo intelligent
      • Ashkenazi Jews apparently have the highest intelligence of any ethnic group measured. 3% of US population but 37% of winners of US national medal of science and 40% of American winners of nobel prize in science and economics. The disproportionateness bothers me.
        • talks about the possibility of selection for intelligence explaining how frequent Jewish diseases are
        • imagine writing a significant portion of a chapter on how smart and great your ethnic group is. Bit cringe. 
      • Honestly a lot of what she said about Israel really annoyed me, probably because Israel is bad and should not be praised
        • Interesting bit about how the victims can do the dangerous thing, which I guess is in the same sort of way that the affected group can reclaim a word but the oppressing group can't: 'The German woman felt she had no right to move into the post-Nazi era. We, being Jewish, could use the privilege of historical victimhood to make that decision for ourselves. So Israel would lead the world in the science and application of medical genetics.' [grammar paraphrased]
          • The closeness of Nazi eugenics to contemporary genetics: many racial hygienists went on to second careers as human geneticists, and twin studies to test heritability are now going on for many taboo subjects such as propensity to violence, crime and alcoholism, likelihood of getting diseases, and Jewish intelligence

        • She had a ton of material on Jews, I know she's a Jew herself but it seemed a bit excessive. Some of it was interesting though.
          • Jewish tradition forbids epileptics from marrying in case it's passed on (without knowing the genetics)
          • Dor Yeshorim tests for Ashkenazi Jew diseases (common ones in that population); people are tested as adolescents and then call Dor Yeshorim with two ID numbers. If they are both a carrier for the same recessive disease, they'll be given genetic counselling over the phone, otherwise they'll be told they're a match. It's for organising arranged marriages.
          • Ashkenazis have a very high carrier frequency of recessively inherited diseases e.g. 1/27 are carriers of Tay sachs. Some of the major diseases are enzyme deficiencies (e.g. Tay Sachs is deficiency of hexosaminidase A), often lipid storage diseases.
          • There was a bunch of stuff on the history of Jews and on finding the ancestors of the Cohenim. 

        • Nazi & Soviet approaches to genetics 
          • in the Soviet Union genetics was banned, former geneticists were working as housekeepers and street cleaners
          • one woman had worked as a preschool teacher until she was outed as a geneticist and fired
          • Nazi Germany actually didn't allow sterilising heterozygote carriers of diseases apparently, which is I guess better than I thought they'd been
          • Genetics globally is now big on making sure decisions are made by the patient and that genetic counselling is non-directive.
        • Unnecessary descriptions of people and their appearances, which to be fair is unfortunately common to a lot of popsci writers

        • Preimplantation sex selection - 
          • There was a rabbi who was a Cohen, and Cohens get a special place in the synagogue. He was infertile so they wanted to get a sperm donor, but a son from the donor wouldn't have really been a Cohen (can only be passed down biologically) so they couldn't legitimately take part in the ceremonies and he'd have to either live a lie or tell people he was infertile, which he didn't want to do. So they did preimplantation sex selection for a girl to avoid the problem.
          • Now (in Israel?) they're allowed do preimplantation sex selection if they already have four or more children of the same sex. rabbi cohen so go for a girl with the donated sperm. allowed choose if youve already have 4 of the same sex
          • She says people have always wanted to control the sex of their child and something like 'now that we finally have the technology to, we ban it?' Yes Masha, yes we do. 
        • Spare parts babies born to be a donor for their older sibling. Molly had Fanconi's anaemia, so Adam was made for her, he donated umbilical stem cells to her when she was 6. The Reproductive Genetics Institute defend this by saying well it can take years to find a suitable donor and by that time the child might be dead, or there'll be side effects coz it won't be an exact match. This is a 100% match.  
        • Huntington's disease - talked about the experience of seeing a parent have it and learning you have the gene for it so will almost certainly get it and go through the same horrors as they did, both physical and mental. The waiting game sounds awful, and I can see why some people don't get tested.

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