[LMB] We've been discussing gene engineering on people...

Beatrice Otter beatrice_otter at zoho.com
Mon Oct 7 23:31:02 BST 2019


---- On Sun, 06 Oct 2019 18:29:15 -0700 Lois Bujold <mailto:lbujold at myinfmail.com> wrote ----



LMB:  Speak for yourself, says every woman ever.

A possibly useful test question might be, if one had the genetic 
engineering capacities, would one elect to _insert_ the [whatever 
genetic condition is being debated] into one's embryonic child?

If the answer is "No!" the prior question seems also answered.

Ta, L.






Speak for yourself on that one.  Very few people would choose to deliberately make a child autistic; most people still think our condition should be cured.  (If I were going to design a child for myself, it would have autism but not some of the secondary conditions associated with autism, like digestive problems and a tendency to anxiety.)  But I like who I am and would never want to change it.  That framing of the question, to someone with a disability who has to constantly advocate for my right to exist in public and to receive the accommodations I need because I don't fit into the common mold, is only about half a degree away from one of my major problems with the SF/F field as a whole, which is that most people imagine the ideal future to be one in which people like me don't exist, or see us as a problem to be fixed/cured/eliminated.



There are a lot of things that I would not specifically choose to put in that I would also not specifically choose to take out.  Some things are absolutely bad and negative with no possible good points.  Some things are absolutely positive with no bad points that I can see.  There are a LOT of things that are in the middle, or that have aspects of both, or where whether it's good or bad depends on circumstances you can't predict at the time the fetus is being designed/altered.  And there are ALSO  traits/conditions where the sole determiner of whether that trait/condition will cause reduced quality of life are the ways society treats you when you have that condition.  Skin color, say, or queerness of whatever variety, or left-handedness in the past, or any number of things.



It seems to me that an approach that includes "let's edit out the stuff we would never deliberately choose to put in" would have some major flaws, mostly stemming from the fact that it greatly expands the list of traits and conditions to be edited out.  If you're saying "only keep the stuff that you would deliberately put in," which it seems like you are ... that's a lot different than saying "only take out the stuff that is actively harmful to the child."  I mean, I think "only take out the stuff that is actively harmful" is still too broad because it leads quite strongly to the elimination of anyone like me.  Autism is one that a lot of people would say is actively harmful, yet I am happy with who I am and though there are things I would change about my brain and body, autism is NOT one of them.  (And, by the way, when I say I'm happy being autistic and don't want to be cured, lots of people assume "oh, it's because you're high functioning, if you were low functioning you would sing a different song!"  Leaving aside the inherent problems with the whole "high functioning/low functioning" framework, the happiness of most autistic people is not based on how much support they need/how normal they look (with the obviously weird ones and the ones who need lots of help being less likely to be happy and more likely to want a cure), but rather on whether or not they're accepted and treated well by the people around them.



The more uniform the genome, the more things get edited out, the easier it is to discriminate against the differences that remain because there are fewer of them.



Or let's talk about race.  There probably aren't that many Black parents today who would want to genetically alter their child to make them look completely White, but given that the darker your skin is the more prejudice you face, there are many who would be tempted to lighten the skin a shade or two, make the hair a touch less kinky, make the nose narrower.  And it would be a perfectly rational thing to do: the child would still be Black, but would face less prejudice for it.  And yet the problem is not any of the traits being adjusted, but the way society treats people who have those traits.



Until we have a society with no racism/sexism/homophobia/ableism or any other major prejudice, I don't know that allowing major editing except for certain specific things would be wise.



The way I'd set it up would be to have a list of conditions you could edit out without question, mostly things that are immediately deadly, like Tay Sachs or cancer or heart disease.  But  "this can shorten your life" would not count, it has to be something where the condition is the primary cause of death.  If there's a condition that doctors say has absolutely no upsides and has no possible benefit in any situation and therefore is not needed for genetic diversity, AND a supermajority of adults with that condition would like eliminated, it can go on the list of things you can edit out with no question needed.  Anything beyond that list, you have to get permission from an ethics panel on which at least half the members HAVE the condition you want to edit out.



Beyond that, focus on treatment of health conditions and maximum accessibility for a wide variety of physical/mental/emotional needs.



Beatrice Otter


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