
A Baby with 3 Genetic Parents Seems Healthy, but Questions Remain - happy-go-lucky
http://www.npr.org/sections/health-shots/2017/04/08/523020895/a-baby-with-3-genetic-parents-seems-healthy-but-questions-remain
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jakob223
I'm often frustrated by the extremely cautious attitude some people have
toward technology with the potential to have negative consequences, when it
seems much more likely to create positive ones.

For example, self-driving cars and the possibility of an accident a human
would have prevented.

I think sometimes we need to be a little bit better at accepting risk when it
comes with positive things.

~~~
technotony
This. Society, wrongly in my opinion, seems to have converged on a 'do no
harm' philosophy. Essentially we seek to minimize the risk of type 1 errors
(approving a technology that causes harm) but in the process increase the
number of type 2 errors (delaying or rejecting a technology that would have
been safe). I think the reason is because those type 1 errors are visible and
can be seen, so cause backlash, whereas the type 2 errors cannot be seen so
easily. I do think we'd be better off balancing these two risks rather than
just minimizing type 1s (of course this is hard as many type 2 risks are of
the unknown unknown variety).

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theprotocol
It seems to me that your reasoning comes from not caring about an increased
turnover of potential effects on human lives (one such effect being death).

It's quite Mendelian an attitude, and frankly I fear people who share your
view - advancement at the cost of "breaking a few eggs" \- a line not unlike
what you'd hear from an evil villain in a movie, or, sadly, 2017 hackernews.

~~~
Chris2048
Except lots of eggs get broken today as a matter of course. If a technology
saves lives, losing them to get it quicker might be a matter of balance.

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darpa_escapee
> losing them to get it quicker might be a matter of balance.

This is why utilitarian math with human lives is horrifying.

You believe you can quantify the worth of a life so that it is easier to
justify taking it.

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theprotocol
I find it to be the slipperiest of all slopes. It's an insidious threat to
humanity. It reminds me of moral relativism, but instead of cultural factors
being used to justify absolutely anything, here it's some bizarre yet
convenient calculation of worth, which by total coincidence (sarcasm), allows
all the would-be human experimenters to feel good about themselves.

We haven't learned a thing from the scientific community's hype cycle.
Scientists and technologists need to humble ourselves - the polar opposite of
presuming to operate on humanity based on some assessment of human worth.

We don't even know what a good diet looks like, never mind grandiose agendas
based on assumptions of human worth!

(I'd also like to correct what I wrote earlier - I meant Mengelian, not
Mendelian.)

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Chris2048
Again, what's this got to do with utility?

You give a sceptical commentary free of any actual examples; what are you
talking about?

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tabeth
I'm not really following this article: what "questions remain", exactly? The
child is better with the procedure than without, no? What exactly is the
alternative that would leave no questions remaining?

\---

To add, I guess I understand the questions, but rather am struggling with the
distinction between this procedure specifically, and the outcomes when _any_
child is born, generally.

~~~
nxc18
The question is about whether the child will develop symptoms later in life,
as the defective DNA was not 100% removed.

The larger questions around issues like these is whether or not the fix will
last. Solving a problem 90% can actually have pretty bad consequences; If you
solve a problem that causes infertility or early death only temporarily, you
could create a child that grows to adulthood only to have life cut short.

Would this process still be a good thing if the child died at 10 years rather
than 3? 15? 20?

Questions remain because we actually have no idea how this is going to play
out.

I'm with you, this is probably a good thing, but it will be many years before
we know for sure.

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Mz
_The question is about whether the child will develop symptoms later in life,
as the defective DNA was not 100% removed._

If he does not die by age 3, it is an improvement. Duh.

~~~
Teever
So if the child lives to age 53, but after age three it is a life full of
agony and tremendous burden to society that's an improvement in your book?

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Mz
You know, I have a form of Cystic Fibrosis. I was diagnosed late in life and I
get accused of being insane and making shit up for talking about getting
myself well. I would literally commit suicide if I thought my future was as
hopeless as what doctor's promise you for Cystic Fibrosis.

Yet, I have been on email lists where parents said very touching things like
"My son turned 18 today. Today, the life expectancy is age 36. When he was
born, it was 18."

And I have talked to people who have had double lung transplants -- a thing I
have no desire to go through and the idea of being listed fills me with horror
because you basically wait for someone young and healthy to die tragically
young in an accident so that you might live -- and they describe the agony
they have been through and say they would do it all again and have no regrets.

The parents wanted this child. Their two previous children died by age 3 due
to the genetic disorder the mother carries. It seems they felt it was better.
Who the hell are you to judge?

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mankash666
It's unfortunate that the US made this experiment illegal. At least wait for
the results of the research before making a conclusion! Needless to say, put
in safeguards to contain damage, if any.

~~~
snuxoll
What safeguards could you even put in place that wouldn't deprive the child of
basic human rights? The major fear I could see is that the child could pass
damaged genetic material down to their offspring that may not cause immediate
harm in a single generation, but over the course of N generations the
resulting genetic mutation from daily life + combination with other DNA during
fertilization could potentially cause serious issues.

How do you protect against that? Stop a human being from ever having children?

The dangers of mucking with the DNA of a human are much higher putting self-
driving cars on the road or splicing genes into simpler organisms like crops.

Now, to be fair: this wasn't actually genetic modification, but "simply"
replacing the mitochondria of the embryo with that provided by a donor. The
dangers here are minimal in reality, from what I can tell.

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scurvy
I'm always torn on the amount of money and resources that goes toward
fertility and reproductive sciences. Money and resources that should be going
towards cancer research, vaccinations in the third world, etc. I'm not trying
to be overly harsh, but nature is telling you not to have kids. We shouldn't
fight that.

On the other hand, as a parent, I know how wonderful kids are.

~~~
13of40
Something that baffles me is that if you take the position that we should
select for healthy genes and not put resources into persisting unhealthy ones,
it's "bad" because that's "eugenics". But at the same time, the people who
spend $200K to get therapy like this are doing it for the sole purpose of
persisting their own genome. If that wasn't true, they'd just adopt or raise
foster children.

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paulryanrogers
"If that wasn't true, they'd just adopt or raise foster children"

Adoption has negative connotations for some families and cultures. So it's
possible there are other motives involved.

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13of40
That's exactly my point. They're basically being locally racist. And somehow
that's not just OK, but we treat it like an inalienable right.

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paulryanrogers
Why assume racism?

Some people hope their children will be in their elder years, and adopting
means the children may be more likely to bond with biological parents. Media
that romanticize finding one's 'real' parents can indirectly contribute to
those kinds of concerns.

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laythea
Rights for parent is one thing, but what about my rights to live in a world
defined by nature, not humans? I don't want my genetic heritage to be polluted
with this kind of meddling.

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jpttsn
That's not a right you have; you're out of luck.

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laythea
apparently not; apparently so.

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ouid
"ethical challenges"

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andrewclunn
Outlaw the practice to force it overseas. Blame the physician for avoiding
regulatory oversight. Yeah, that sounds like the genetic luddites alright.

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devereaux
No, no scientific questions remain. The baby is alive and healthy as
predicted, with a percentage of abnormal mitochondria too low to cause any
manifestation of the disease.

Only bigotry remains.

~~~
dogma1138
Actually there are scientific questions in regards to life long latent effects
that might manifest themselves later on.

