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Lapsia valitessa – Geenit, vammaisuus ja suunnittelu

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Genetiikkaan ja lisääntymiseen liittyvä teknologia on jo nyt niin pitkällä, että meillä on mahdollisuus valita minkälaisia lapsia hankimme tai jätämme synnyttämättä. Pitäisikö mahdollisuudesta iloita vai sittenkin pelätä sen seurauksia? Teos pureutuu tämän hetken kaikkein ajankohtaisimpaan eettiseen kysymykseen ja muistuttaa, että saatamme parastaikaa seistä koko ihmiskunnan käännekohdassa. Maailmankuulu moraalifilosofi ja kirjailija Jonathan Glover esittää teoksessaan, kuinka mahdollisuuteen geneettiseen valintaan voi suhtautua ja valinnasta seuraaviin mieltä askarruttaviin kysymyksiin yrittää vastata.

Vuonna 2002 kuuro pariskunta käytti lisääntymiseensä spermaa, jonka oli lahjoittanut heidän perinnöllisesti kuuro ystävänsä. Pariskunta halusi kuuron lapsen, heidän mielestään kuurous ei ole vamma, vaan erilaisuutta. Jonathan Glover aloittaa tällä tapauksella ja tutkii tunteita herättävää ajatusta geneettisestä valinnasta ja etiikasta, kun valinta tehdään muusta kuin lääketieteellisistä syystä, ihmisen jalostamiseksi ”paremmaksi”. Pitäisikö vanhemmilla olla oikeus vammattomien lasten lisäksi määrittää vaikkapa lastensa hiusten tai silmien väri? Miten tuollaiset valinnat vaikuttavat ihmisiin yksilöinä ja koko yhteiskuntaan? Pitäisikö ihmisten geneettistä koostumusta yleisesti ottaenkin parannella? Vai onko ihmisluonnossa jokin keskeinen ydin, johon meidän ei pitäisi sekaantua?

Tämä kauniisti ja selkeästi kirjoitettu kirja on tarkoitettu kaikille, joita kiinnostavat vanhempien oikeat ja väärät valinnat lastensa suhteen ja kaikille niille, joita kiinnostaa ihmiskunnan tulevaisuus. Glover käsittelee ristiriitaisia kysymyksiä humaanilla ja sympaattisella tavalla.

139 pages, Paperback

First published January 1, 2006

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About the author

Jonathan Glover

27 books55 followers
Jonathan Glover (born 1941) is a British philosopher known for his studies on bioethics. He was educated in Tonbridge School, later going on to Corpus Christi College, Oxford. He was a fellow and tutor in philosophy at New College, Oxford. He currently teaches ethics at King's College London. Glover is a fellow of the Hastings Center, an independent bioethics research institution in the United States.

In Humanity: A Moral History of the Twentieth Century, published in 1999, Glover makes the case for Applied Ethics. He examines the various types of atrocity that were perpetrated in the 20th century and considers what sort of bulwarks there could be against them. He allows that religion has provided bulwarks, which are getting eroded. He identifies three types of bulwark. The two more dependable are sympathy and respect for human dignity. The less dependable third is Moral Identity: "I belong to a kind of person who would not do that sort of thing". This third is less dependable because notions of moral identity can themselves be warped, as was done by the Nazis.

In 1977 he argued that to call a fetus a human person was to stretch the term beyond its natural boundaries.

In The End of Faith, Sam Harris quotes Glover as saying: "Our entanglements with people close to us erode simple self-interest. Husbands, wives, lovers, parents, children and friends all blur the boundaries of selfish concern. Francis Bacon rightly said that people with children have given hostages to fortune. Inescapably, other forms of friendship and love hold us hostage too...Narrow self-interest is destabilized."

In 1989 the European Commission hired Glover to head a panel on embryo research in Europe.

He is married to Vivette Glover a prominent neuroscientist.

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Displaying 1 - 10 of 10 reviews
Profile Image for Steven R. Kraaijeveld.
560 reviews1,924 followers
March 9, 2018
"We are extraordinarily lucky to be thinking at this time about the values that should guide these genetic choices: at the same time they are just starting to be real. No previous generation has thought about human values and the good life with a chance of their thinking mattering so much" (103)
Profile Image for Jake.
202 reviews27 followers
March 18, 2021
For me, philosophy is about intellectual curiosity and exploration. And like all good explorers, you must be willing to take risks and put yourself out there. Philosophers select an issue, survey the available evidence, evaluate the perspectives, and defend a position. Without making a point – that is, without allowing yourself to be vulnerable - you risk nothing. But you also don’t really discover anything, either. That's how I felt after reading Jonathan Glover's book, Choosing Children - a book that says practically nothing and risks practically nothing.

Toward the conclusion, Glover broaches the question of genetic engineering and whether there should be limits to our intervention with ‘human nature’. He writes: "[...] my own conception of the desirable boundaries of the protected area [of human nature] is far from worked out. No doubt this is partly because my own thinking has not penetrated far enough". But isn't that the whole point of writing a book, to explore further? Shouldn’t we take intellectual risks and say something of substance, if only in that moment?

The book is full of lukewarm argumentation like this. For instance, Glover says "I accept both the conservative thought that we need to keep the boat afloat on an even keel and the radical thought that we may also need to do some rebuilding as well". Again, this sentence left me wondering what, if anything, Glover is trying to say. Is he maintaining a cautious optimism in the future of genetic engineering? Fair enough, but that's not really a thesis, and it’s certainly not assertive enough.

When Glover is assertive, I found some of his positions to be pretty bogus. Another Goodreads reviewer already highlighted his stance on women's carceral reproductive rights, so I won't dwell on that point (I think it’s noteworthy, though). However, he also claimed that "[...] we do not owe anything to unconceived potential children". Considering that Glover is a bioethicist writing specifically about human potential, that one was a bit of a noggin-scratcher for me...

That isn’t to say that Choosing Children doesn’t have any redeeming qualities. Indeed, Glover explored some promising ideas within the hundred-or-so pages of his book. In particular, he presents and challenges what he refers to as the “expressivist argument”. According to Glover’s precis, expressivists argue that the private decisions we make about genetic engineering are not merely individual decisions. Rather, they contain and express certain ideas about health, beauty, and normalcy that reflect a wider set of cultural values. These cultural values demonstrate which qualities we consider desirable and, conversely, which ones we consider undesirable. Individual decisions are, therefore, relational decisions with broader socio-cultural implications.

It’s an intriguing premise, and one that I think should be taken very seriously. Glover doesn’t really buy what the expressivists are selling, but he doesn’t do a very good job rejecting their claim. “Choosing to have a child without certain disabilities”, he says, “need not come from any idea that disabled people are inferior. Nor does it entail that the world, or the gene pool, should be cleansed of disabled people”. I’m not convinced that this is true. Since bio-engineering and eugenicist decisions are based upon perfectionistic ideals, they have a very real capacity to signal to others what it means to be – and not to be – a human being. This can become extremely dangerous if such private decisions are adopted more broadly as socio-cultural models.

However, Glover thinks that the most promising response to the expressivist problem is within the domain of intentionality: “I think that, other things being equal, it is good if the incidence of disabilities is reduced by parental choices to opt for potentially more flourishing children. But we should not deny the potential cost to which the expressivist argument draws attention. And we should try to reduce that cost as far as possible". He continues on: "To do this, we need to send a clear signal that we do not have the ugly attitudes to disability. […] To think that a particular disability makes someone’s life less good is not one of the ugly attitudes. It does not mean that the person who has it is of any less value, or is less deserving of respect, than anyone else”. This is not a satisfactory answer to the expressivist problem. I find it difficult to accept the moral authority of good intentions, especially when history is full of examples where good intentions have produced horrific results. What Glover is recommending here feels something like a bioethical rendition of the ‘it’s not you, it’s me’ breakup line (rough translation: it’s always you).

Overall, Glover’s book is a frustrating collection of missed opportunities. Although there is something to be said for a more liberal approach to “human flourishing”, we can’t pretend that these private decisions exist somehow outside of the public realm. State-mandated or not, all eugenicist decisions have social implications – and that’s true irrespective of John and Jane’s good intentions.
29 reviews
February 5, 2020
Honestly speaking; I didn't get anything new from this. This work had some good points, but I felt like they could have been laid out on one Power Point slide.

Also I'm questioning his opinion about shortening women's prison sentences to support their freedom to make children into the free world. Like, don't people have to give up that freedom if they commit a crime?
Profile Image for Antero Tienaho.
262 reviews17 followers
November 12, 2019
Tartuin tähän enemmän kirjailijan kuin aiheen innostamana. Gloverin Ihmisyys teki jokin aika sitten valtavan vaikutuksen. Selkeän tyynellä tavalla kronikoitu moraalihistoria käsitteli vaikeita moraalifilosofisia asioita käytännönläheisellä ja ymmärrettävällä tavalla. Sama meininki jatkuu, tosin pienimuotoisemmin.

Lapsia valittaessa käsittelee dilemmoja, jotka syntyvät geeniteknologian ja muiden lisääntymiseen vaikuttavien teknologioiden kehittymisen myötä. Onko oikein muokata perimää, jotta syntyvä lapsi ei ole vammainen? Onko kuuron pariskunnan oikein valita alkio, joka todennäköisesti myös on kuuro? Onko geeniteknologian mahdollistama ominaisuuksien muokkaus rotuhygieniaa tieteen vaatteissa?

Glover käsittelee näitä kysymyksiä napakasti mutta pyrkien parhaan mukaan ymmärtämään niiden herättämiä tunteita. Ytimeen nousevat lopulta kysymykset siitä, mitä on hyvä elämä - mitkä asiat mahdollistavat yksilön kukoistamisen. Suurin osa näistä kysymyksistä on jotain, jolle en itse ole valtavasti uhrannut aikaa mutta Gloverin argumentit ja päätelmät tuntuvat pääsääntöisesti järkeviltä ja tasapainoisilta.

Pidän kovasti Gloverin vakaasta, rauhallisen täsmällisestä lauseesta. Lisäksi on ihailtavaa, miten onnistuneesti hän tiivistää paljon nyansseja melkoisen lyhyeen kirjaan. Lisää näin kirjoittavia filosofeja, kiitos!
1 review
September 17, 2020
There is a great difficulty in speaking of disability in a way that is inclusive of the diverse forms disability can take. I believe Glover writes with an empathy and understanding of this crucial point.

The book also flows nicely, beginning with more practical cases and drifting towards more abstract ethical discussions towards the end, sharing snippets of practical cases along the way, as well as many philosophical perspectives on the different arguments considered.

Glover shows a great range in his knowledge of philosophy and describes the philosophies he does in simple terms for those of us who are not familiar with the big thinkers he discusses.

The book is, above all, varied; followed by flowing; followed by “easy-to-read.” This means it does not go into much depth in any one argument, but gives the reader many references to investigate in their own time. It is almost too light-hearted in its content to create any strong reaction on the reader’s part. For people well-versed in discussions on disability, this book might only maybe share a perspective you had not heard of before, but you might struggle to find that one important page.
Profile Image for parker.
78 reviews
August 25, 2023
excellent discourse on genetic modification of humans, however it got slightly repetitive after a while :/

the only thing i wish was discussed was the aristotelian idea of eudaimonia and the different types of 'souls'... i think it would've added a lot to the argument of human flourishing (especially aristotle's view of plant 'souls'- could be interpreted in a way to debate human characteristics and vegetative states)
Profile Image for Delbert Yip.
19 reviews
January 4, 2024
I enjoyed the first half. I agree with other reviews below, especially the non-committal attitude towards some key questions. I was very confused as to what his arguments were in the last chapter.

Overall, some interesting ideas that merit revisiting, but I would skip the third chapter if re-reading.
Profile Image for Regina Cattus.
341 reviews14 followers
September 20, 2016
This book was a little repetitive, and unavoidably outdated, but nonetheless it was eye-opening. It covers (as you might guess from the subtitle) a lot on the ethics of genetics. It stretches in scope from genetic engineering to eugenics to disability-racism to the philosophy of what humanity is. It's only a short book, but it raises a lot of the issues associated with genetic technology that I hadn't previously considered, looking at novel aspects of them. It was worth reading.
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