

Using PGD to design deafness in child - mike_esspe
http://www.newscientist.com/blog/shortsharpscience/2006/09/designer-deafness.html

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pjin
It would be unethical to maintain a harmful allele of a gene, assuming that
the particular allele is unequivocally harmful.

But that is not always the case. The textbook example is sickle cell anemia:
although it is very harmful in homozygous individuals, it confers resistance
to malaria without negative side effects in heterozygous individuals, which is
beneficial.

There's the possibility that a harmful gene today becomes beneficial in the
indeterminate future, for a reason that we cannot predict. That is the logic
behind genetic diversity in a species, which allows it to cope with new and
unpredictable environments by essentially allowing alleles to compete in the
"natural marketplace."

If we're going to take control of our genomes and select for ourselves which
alleles are harmful or beneficial, we must at least be prepared to preserve
genetic diversity, if not in living individuals, then in gene banks or genomic
databases.

~~~
bdcravens
Ditto for Cystic Fibrosis, with regard to cholera resistance.

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hmsimha
When I was young, I was browsing one of my dad's medical dictionaries and I
came across the term 'Polydactyly' -- essentially being born with an extra
finger, typically removed shortly after birth. In most cases it's not usable
but there are many cases where the extra digit functions just fine. It blew my
mind that the accepted reaction was to just cut it off. Perhaps there are
advantages to having an extra finger.. what if 4 fingers was the norm and the
5th finger was cut off?

I think that any kind of tampering to 'take away' any part of a person without
their informed consent is unethical (unless the removed component is likely to
be problematic in some way, as in the case of unusable extra fingers that may
be cause pain or cramping of the other fingers).

But at the same time I acknowledge that some practices I disagree with are so
ingrained in cultures that they're not even questioned. For those of you who
are male and circumcised, think about this: If you hadn't been, would you
choose to have it done now? Are you glad it was done at birth? I (like I
assume most men) absolutely would NOT be able to bring myself to go through
with it now, but at the same time, since there's good evidence to suggest it's
a largely unnecessary procedure with very limited benefit, and a measurable
downside as well, my own opinion is that it shouldn't really be performed at
all (someone else mentioned genital mutilation -- this is a form of it). Deaf
parents who want to rob their child of its sense of hearing so he or she will
be more like them are probably not so different from my Jewish parents. When
framed this way I'm sure it's likely to divide a lot more people though.

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ghshephard
What if the predominant traits in our population were supra olfactory
capability (smelling) that helped us recognize people instantly, or avoid
poisons, or perhaps infra-vision (ability to see at night), etc...

What would it be like to be unable to recognize without the use of smell? How
would we avoid some subtle poisons without smelling them? And wouldn't we be
basically helpless in the dark, for 25% of the day, requiring artificial aids
just to keep a car on the road? Walk down a path?

Would deliberately having a child to be like, well, us, be cruel?

I wonder if deaf parents basically are looking at it like this. They are fine
with the way they are, they don't consider being deaf to be a particularly
profound disability, and they want to have children that are like them; not a
particularly unusual instinct.

~~~
antihero
The difference is we live in a culture and a world that has been built around
the senses "normal" people _do_ have, so you would be depriving them of a
large part of that world.

Though if you are happy, then so be it.

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drucken
Every human attribute could be redefined as "cultural" or individualistic and
therefore under the scope of individual or group choice.

But to claim that the state gives up all responsibility for these choices is
absurd since there is there are very real costs for those choices and their
consequences.

For example, increasingly and controversially European state welfare systems
are bearing the cost of IVF treatments, even for the oldest of couples and
unusual parent systems (e.g. 3-parents). But there are clear trends in those
societies for decreasing birth rates which cannot be entirely filled by
immigration. The state has to act if it wants to continue to exist and thrive
(as Japan will probably discover in 50 years time!).

In the extreme, at one end there is Gattaca. At the other end, all members of
society and their children are being required to support choices that would
otherwise never naturally exist, or only exist from enormous harm, but provide
no objective benefit. In both cases, the long run damage to the human race or
individual societies is unknown.

Perhaps the only solution is the minimum one. When it comes to procreation,
allow only choices that permit any viable life and absolutely no more?

Perhaps one day, in combination with AI, there will be an internationally
ratified and strongly enforced _Minimum Viable Person Treaty_ \- a sort of NPT
for Sentient Life?

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mike_esspe
My first knee jerk reaction is that this is awful and unethical, but there are
similar questions with possibly different answer:

1) Is it ethical for two deaf persons to give birth to a child without
screening for their genetic disease?

2) Is it ethical to create a child with disease, that guarantees his death?
(Senescence)

~~~
bdcravens
A bit confused by your referencing senescence, since that's just growing old.
I digress ...

As to #2 there's a huge difference between conditions that cause death. Some
cause very early and painful deaths. I have Cystic Fibrosis, and I should be
able to make it into my 60's (probably far beyond, but I'm assuming today's
science).

As my wife and I are considering children #2 is a very real question (let's
say you don't die young, but have a lower health quality compared to most, and
have tens of thousands of health costs every year with all the financial
instability that comes with - would this be unethical to force on someone?)

~~~
ordinary
_A bit confused by your referencing senescence, since that's just growing
old._

Everyone is born with a fatal disease: mortality. The first and second
questions asked in the grandparent's post can therefore be seen as similar,
which, from a purely logical standpoint, should have similar answers. However,
most people would say that it is not ethical to pass a specific fatal disease
to your child, but that it is ethical to have a child at all, even knowing
that it will die eventually.

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tunesmith
For those that see this as depriving a child of music, sound, etc - remember
that for this particular potential child, it's deafness or never existing at
all. It's not as if that particular child has a chance of hearing.

Those that argue that a different "hearing" embryo should be deliberately
selected instead are guilty of the exact same thing they're protesting
against.

I think the only consistent ways to argue against this are to either argue
against the entire practice of embryo selection for _any_ reason, or to argue
that deafness is a sufficient reason to prevent any embryo from coming to
term.

Anyway, I see this practice as being wildly different than that of choosing an
embryo of a hearing being, and then causing it to be deaf.

~~~
LordIllidan
Put yourself in the child's position. You'd grow up and discover that your
deafness is not due to some random genetic mutation, or even just inheritance
- but your parents selected you to be deaf - just so that you could be exactly
like them.

I'd be outraged. Wouldn't you be?

And I'm not saying that we should abort deaf children, nor am I saying that we
should deliberately select "hearing" embryos instead.

~~~
leoedin
The point tunesmith is making is that if the parents hadn't selected the child
to be deaf, that particular child simply wouldn't exist. The parent's child
would be a different combination of genetics. The child themselves really
couldn't be outraged, because if the parents had made a different choice they
would have never developed into anyone.

It is an interesting ethical question. It isn't nearly as simple as the
circumcision debate, or the "remove an extra finger" issue discussed
elsewhere. In both those cases, the parents make a choice to modify an
existing child. The child grows up knowing that had their parents made a
different choice, they would have a foreskin/extra finger etc. The deafness
debate is profoundly different, because the child simply wouldn't exist had
the parents made a different choice.

If the choice for me was between being selected to be deaf and not being
selected at all, I'd choose the former.

~~~
saalweachter
Considering the countless potential never-borns is a terrible game. If the
children who could be born get a full say in the matter, then all women
everywhere should always be pregnant, so that the maximum potential number of
children can be born. Worse: we should really be inducing labor prematurely at
7 or 8 months, once survival is nearly guaranteed with current technology, so
that the mothers can become pregnant as soon as possible, giving even more
potential children the chance to be born. Simply matching up every egg with a
sperm does not give every potential child the chance the exist: we need to
clone every egg and every sperm a trillion times over, and match up every
possible combination. Half our population must be constantly pregnant, and the
other half tending the endless fields of frozen embryos waiting their turn, if
every potential child is to be given their day in the sun.

There are just too many potential children to go down this road. Every action
we take closes the door on an infinite number of potential children while
opening the door an a different infinite set. Getting pregnant closes the door
on the infinite number of children you can't have while pregnant with the one
actual child.

~~~
leoedin
I completely agree with you in broader terms, but that wasn't really what my
comment was about. The poster I replied to suggested that they'd be outraged
if they discovered that their parents had made a concious choice to select a
deaf embryo. My point, and the reason that it isn't a black and white debate,
was that if the parents hadn't made that choice, the deaf-but-outraged child
wouldn't exist.

On a larger, societal level, I think that purposefully selecting deaf children
is wrong. On a personal level, if I was that deaf child, I don't know if I
could be outraged at my parents choice because if they hadn't made it I simply
wouldn't exist. You'd have to be fairly certain in your beliefs to be outraged
at acts that resulted in your being.

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orbitingpluto
Nothing throws this into a grey area as much as deafness. Deaf culture is
truly profound. Entire vibrant deaf communities exist within 'normal'
communities and can interact with others on an equal basis.

On the flip side, it can be seen as offensive to others when medical options
become available to restore hearing. People will sometimes forgo treatment to
'stay in the clique'. This strong desire to not see deafness as a disability
and an independent thriving culture is what might influence the choice to have
a deaf child.

And while I'm being all stereotypical, if you ever have a Final Cut Pro
question and you have a choice between asking a deaf or a hearing person,
choose the deaf person....

~~~
ordinary
_Nothing throws this into a grey area as much as deafness. Deaf culture is
truly profound. Entire vibrant deaf communities exist within 'normal'
communities and can interact with others on an equal basis._

I'm genuinely curious: would curing deafness destroy those communities?

~~~
Lexarius
Many don't view it as something to be cured. Some would take it, some would
not. Those who took the cure would likely be ostracized.

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ujeezy
In a similar vein, there was a documentary called "Sound and Fury" on the
controversy of cochlear implants in the deaf community:
<http://www.pbs.org/wnet/soundandfury/index.html>

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nikolakirev
Just to be on the same page. The child is not "created" and then "implanted"
with the disability. The embryo with the disability is picked to be born. So
it is not unethical to the child (the other option for him/her was to not be
born).

~~~
Houshalter
True, but the result is the same whether the child was "picked" from an embryo
with a disability or if he was born fine and then the parents injured him in a
way that gave him the disability, which would be considered totally despicable
and illegal.

~~~
simonh
No, the result is not the same. It's a choice between life with deafness, or
death as an embryo so that a sibling can live instead.

~~~
Houshalter
The result is a sentient being with a disability. It doesn't matter if a
mutation caused it or you physically injured the child, the consequences are
the same.

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LordIllidan
This is sick. Depriving a child of music, birdsong, etc - just so that it can
fit better into your society can't be considered ethical by any means.

~~~
simonh
Read the article. The parents are selecting an embryo with the genes for
deafness, not modifying an embryo to be deaf.

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jh73
In the end I think it is up to the parent to decide how their children turn
out, even if I disagree with that decision. When someone chooses their mate
they are doing the same thing, if only in a more crude way, and certainly
we've all disagreed with someones mate choice in the past. This is really no
different.

If I want to have a child, and the only way I'd be willing to have one is if
it completely designed, I would want my child to be tall and intelligent. Some
of the variants may be seen as detrimental to some people (HEXA), but I
wouldn't want society deciding on that.

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murbard2
That is what happens when you push for political correctness. Sure it's not a
handicap, it's a "difference", wait it's a "culture", a "community". Keep
bashing this over and over, pass laws to force companies to feed that kool aid
to their employees, and sure enough you end up with this kind of situation.

In the same vein, you'll see people arguing for neuro-diversity to defend
autism as a perfectly desirable condition.

~~~
mdpye
And this kind of comment is what happens when people lack respect for those
whose experience of life is different from their own. Do you believe that
their experience is less valid? What are your objective criteria for deciding
this? Differences are just that - they confer advantages and disadvantages
against the population average. The weight of balance may fall either way, who
are you to declare that without experiencing it?

I find the point about autism especially rich, given that it must be
understood at a spectrum, and in a forum such as this, most of us likely sit
waaay closer to the end you deride that the population average.

~~~
yew
_I find the point about autism especially rich, given that it must be
understood at a spectrum, and in a forum such as this, most of us likely sit
waaay closer to the end you deride than the population average._

Self-criticism being a high and praiseworthy art, at least where I come from.
The general sentiment that one shouldn't be permitted to study and improve
oneself is _much_ more offensive.

~~~
mdpye
I'd like to understand this comment, but I'm afraid I can't fathom its
relation to what you quoted.

I meant to convey that the highly analytical mindset is lauded as a great
strength here. The popularity of social skill self-help type articles on here
also demonstrates that it is a strength with trade-offs. Y'know, like almost
all differences in people's make ups.

Sorry if we're talking at cross purposes.

~~~
yew
Autism (along with all sorts of other things) isn't just 'a highly analytical
mindset.' As you say, it has downsides. Which can be very unpleasant (and not
just for other people, either).

The idea that we should all just learn to except everybody for who they are,
which in my experience is often coupled with the idea that _wanting_ to change
yourself is bad, is an idea that I am not a fan of, to put it lightly. I've
heard it directed at myself to often for that.

~~~
mdpye
Fair enough. I've never had a serious encounter with the opinion that one
shouldn't want to improve oneself. The idea that wishing for a change which
cannot be achieved might be harmful (to happiness at least) - but not the idea
that someone shouldn't try to grow towards a better self.

By respecting someone else's differing experience, I mean supporting rather
than dictating their efforts. Who else could know who you want to become?

~~~
yew
That's a wonderful sentiment, but I really have to wonder, how far does it go?
I've heard the same thing from other people who went on to protest scientific
studies of sexuality or research on cochlear implants or a dozen other similar
things, all on the grounds that such things were 'offensive' and 'destructive
towards culture'.

Maybe you don't believe these things. I have little enough reason to think you
do. But once you actually have to choose between _this_ group 'curing'
themselves and _that_ group 'protecting their culture', who do you have the
most sympathy for?

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andymcsherry
I'm sorry, but a 30% chance over 4 cases doesn't equate to "must have
happened". There's a 24% chance it didn't happen with rather simple
statistics.

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vsviridov
That is pretty f __*ing unethical in my book...

