A Question of Ethics

[Roland Deschain]

This is the issue with any advance like this. Are we, as a species, mature enough to make the right decisions, and will we ever be? I don't think there's an answer to this, as when we are mature enough to make that decision without guilt or regret, there'll be some other moral dilemma just as great, if not greater. We humans like it simple, but make our lives anything but.

[pieces o nine]

I do not envy someone having that choice to make.

I think that's part of the problem. Suddenly we have huge choices to make where before there were none.

Those choices have always existed, although in the past they were made post-birth. How many cultures have a past where the tribal leaders or fathers formally accepted or rejected an infant and simply relegated "undesirable" ones to abandonment or exposure? Later, "imperfect" people were unquestioningly institutionalized (sometimes for profit!) far out of sight and mind of the rest of the population.

Not until relatively recent times did sentiment regularly outweigh survival, whether (depending on the specific culture) for the very young, the very old, the chronically ill, those with mental or physical disabilities, or the 'wrong" gender, or 'wrong' orientation. Yes, we have a long way to go as a species in developing enlightened ethics, but we have come quite a way as well.

[Bluenose]

I know a number of people with Down's syndrome, they seem generally to be happy people and can be a joy to know.  OTOH, I had a friend many years ago who's sister had Down's and she was a different kettle of fish entirely so just like "normal" people, I don't think you can generalise too much.

On another note, my sister in law is intellectually disabled and also suffers from some form of psychotic illness, possibly bipolar disorder  (just how a diagnosis can be made in her case seems impossible to me), plus she has petit mal epilepsy.  Her quality of life is extremely poor and she now lives in a nursing home where she requires 24 hour care.  She refuses to weight bear, so now she cannot walk due to muscle wastage.  She has had many broken bones and nasty bruises from the falls due to her absence seizures (and I am sure that they are not due to abuse, I have seen these myself - they are very frightening).   She can be very disruptive if she does not get the attention she thinks she deserves (all the time) although things have been a bit better recently since she has had a new room-mate who happens to have Down's.  I raise this question because on the whole had the option of aborting been available - with the certain knowledge of how she would turn out, which of course would never have been able to be known - I wonder if it might have been better for all concerned, including my SIL.  Her life has no challenge, no observable joy, only torment and anguish.  Add to that the effects on Mrs Blue as a child always having to be the one who had to accept second place, be the grown up one, because her sister simply and rightly took all the attention of her parents and couldn't help it or do any better.  It may have been necessary, but it was not fair, and Mrs Blue to this day still hold some residual resentment for her sister for in effect taking away a lot of her childhood.  So I do not think it is at all clear cut.  It is easy to take the moral high ground and say these lives should all be cherished and, in the abstract, I agree.  However, it is nowhere near as easy as that when you're the ones faced with the reality of life in these circumstances.

No, I am not calling for the automatic selection against minor genetic defects, but given the lives that some are dealt, I do wonder whether if some of these lives of misery can be avoided whether it might not be a good thing.  I do not hold with the notion that an embryo is yet a person - it may develop into one, but the characteristics that make us fully human develop much later , IMHO.  If major defects that would limit the possibilities of a happy life can be detected at an early stage, for those where the risk is known and can be tested for very early, even before implantation via in-vitro fertilisation where possible, then I think that the options should be made available to parents, but it needs to consider not only the parents, but also the potential quality of life of the future child and adult.  Not a simple or easy situation.

What I really don't want to hear is the zealots like the right-to-lifers meddling in other people's lives.  It's all very well for them to make morally absolute statements, but they do not have to live with the consequences of the decisions they seek to influence.  Their input into these sorts of debates is almost entirely toxic as far as I am concerned.

[Aggie]

Those choices have always existed, although in the past they were made post-birth. How many cultures have a past where the tribal leaders or fathers formally accepted or rejected an infant and simply relegated "undesirable" ones to abandonment or exposure? Later, "imperfect" people were unquestioningly institutionalized (sometimes for profit!) far out of sight and mind of the rest of the population.

Not until relatively recent times did sentiment regularly outweigh survival, whether (depending on the specific culture) for the very young, the very old, the chronically ill, those with mental or physical disabilities, or the 'wrong" gender, or 'wrong' orientation. Yes, we have a long way to go as a species in developing enlightened ethics, but we have come quite a way as well.

To respond to this and Bluenose's post, I think (or have read enough to convince me) that the issue relates to who is responsible for the choice.  To place it directly on the prospective parents with no outside guidance is said to lead to a worse psychological outcome for the parents than either no choice or an officially-guided choice.

I'd suggest that a compromise for certain genetic disorders is to have an 'official' recommendation for specific disorders on the books, but to allow parents complete veto-power over that recommendation. For those parents who end up aborting in a recommended case, they can fall back on the security that the doctor / medical system effectively made the choice, not them.  For those who feel strongly that they should raise their own child no matter the difficulties, they will have the freedom to make that choice.  Either way, there will still be some regret, I'm sure, but comparing outcomes in the US vs. French systems seem to indicate that a medical recommendation lessens the burden of choice somewhat.

[Sibling DavidH]

I'd suggest that a compromise for certain genetic disorders is to have an 'official' recommendation for specific disorders on the books, but to allow parents complete veto-power over that recommendation.

Agreed, that would be the ideal middle road.

[Sibling Zono (anon1mat0)]

Back to Pieces, in hunter gatherer societies a disabled child is a real burden that could significantly diminish the chances of survival of the whole clan. Nowadays it's relatively easy to take said High Road, but context can make a very meaningful difference.
--
Certainly these kinds of decisions have to be well thought, even when you have a recommendation, the outcome may not be optimal (in cases with children born with genital ambiguity, doctors recommended surgery but a great number of 'assigned' individuals are very unhappy with the decision).

Lastly there is the quality of life argument, can you guarantee a reasonable quality of life for the individual in question? I'm inclined to believe that the majority of kids with mental retardation, or certain mental disabilities will have a very low quality of life not because it is technically impossible to provide one, but because the resources of the parents/society may not be available to take proper care of them.
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Again, this doesn't cover Psycho/Sociopathy/Narcissism, in which the cost to society should be pondered.

[Griffin NoName]

I agree with most of what's been said. But I do wonder a bit about absolute knowledge. For example suppose the fetus (or zygot etc) has a gene for say "autism", but it's impossible to tell how bad it will be? Many people who have Asperger's have good lives (some I know don't, but most do) but people nearer the other end of the autistic spectrum have no quality of life at all. So, unless some clever people develop a "how to tell how bad this will be" test, the choice seems impossible.

[Bluenose]

Your quite right Griff, that's the nub of the matter.  In my SIL's case, the doctors do not know why she is the way she is, it is not Down's or anything else that they can pin down.  At the most they think it may have been brain damage during birth, but it was not apparently an unusual labour, so whether that means anything is entirely moot.  I suspect she just is that way.  So although my mother in law did say a few times in her later years that it would have been better had my SIL not been born, there would have been and still is no way of telling early on that there was anything wrong.  Indeed, she apparently seemed like a normal baby at first and it was only when she started pre school that any issues became apparent.

So as I see it at he moment this sort of choice should only be made in the most easily detected and more severe cases, where there is a pretty clear idea of the likely outcome.  Just how common that might be I have no idea.  I rather suspect that in the majority of cases, like with my SIL, we will never know that someone's life is so compromised until it is too late to consider doing anything.  It is just sad for all those involved.

[Sibling Zono (anon1mat0)]

The technical problem will take some time to solve with a reasonable amount of accuracy, you would need a full DNA profile, simulate growth under the conditions of the mother's womb and then you get a picture closer to what it would be. Computing power for such feat will take from 30 to a 100 years to arrive, plus the development of the simulation models and proper understanding of how the genome works (that one may take even longer).

Beyond that, only the more severe conditions can be properly screened.

[Griffin NoName]

But Zono, that only takes care of the nature; we are still left with nurture. For example, there is evidence that babies with autism do not go through the attachment phase properly. Of course there's no way at present to know if that is cause or effect, but if mothers/fathers/main carer knew how to handle the issues in the attachment phase better, then it may be the degree of autism could be reduced this is pure speculation on my part. That's just one example of enviromental affects. Surely it can never be reduced to pure genetics?

[Sibling Zono (anon1mat0)]

While it is true that nurture is key in many aspects, the most critical ones will happen in the womb. By the time the baby is out you would be able to tell if proper nurturing would be able to solve a number of issues. There will always be some gray areas in which it will be difficult to make a full assessment but as time progresses less cases will fall into that area.

Also, it will be possible to correct some of the problems at that point.

It may sound scarily similar to Gattaca but as knowledge advances the ethics of genetic manipulation will replace those of simple screenings.

[Bob in a quantum-state-of-faith]

It may sound scarily similar to Gattaca but as knowledge advances the ethics of genetic manipulation will replace those of simple screenings.

I was thinking of that movie--- alas, I found it too depressing to watch all the way through to the end, so I don't know how it turned out (I presume the "normal" eventually gets caught).

The thing that movie gets wrong, and that many people get wrong is that DNA is not a blueprint.  Not even close. As Zono hinted at, there is situational effects happening within the womb which play as much an effect as DNA does.

It's really hard to understand how DNA works; and even harder to explain.   

But, here's one result:  identical twins have identical DNA.  If DNA were just a blueprint/instruction-set, then they'd both have identical fingerprints, identical placement of their appendixes, identical retina patterns, identical iris patterns, identical minor skin blemishes, identical-identical everything, really.

But they don't.

Their eyes are different.  Their fingerprints are different.  Even the lengths of their various bones-- finger, leg, arm, vertebra-- all slightly different from one twin to the next.   This is because DNA does not specify how the fingerprint should look-- it only specifies loosely, "make ridges in the skin, when you get around to growing finger-end skin"  (and yes--that's overly simplified too)

This is because DNA contains too much information-- way, way too much.  Within human genome, for example, there is still code that makes tails, gills, webbing-between-digits, etc.   Most of this unneeded is switched off, all of the time.  But it's still there, lurking.   In fact, vast swathes of human DNA is useless switched-off junk-- the so-called "junk DNA".  What keeps it off, we are only now beginning to figure out.    The science behind that, is called epigenetics.

But it's the switching-off and on of DNA sequences that makes it so much more complicated than a simple set of instructions-- it's as if, within the whole, there were things like:  "grow for approximately 5 miles, or until you get to the end[of what? unknown], then turn to your right about 40 degrees, then travel for another 2 or 3 miles, depending on what you find nearby: if you find fat, go 2 miles, if you find muscle, go 3 miles, if you find skin, stop and switch-off"

Okay, that's a badly mixed-metaphor, but I think it helps a bit.  If DNA were a blueprint?  You'd have specifics-- "go 3.1845 inches, then turn north 8.35761 degrees".  What we have is all relative, instead.   "Do this until that happens, then start doing this other until this next thing happens, then stop".   Relative.   Or more specific:  DNA "says" to the cells at a budding zygote's what-will-become-a-shoulder, start growing an arm here (near the neck, at the head-end of the body).  Grow the arm until you get to the elbow, then grow an elbow until it's done, then start growing more arm (only, post-elbow style this time).  Grow until you get to the wrist, then grow the wrist, then switch up and grow fingers.

How do the cells "know" when the arm is finished, and to start on the elbow?  Unknown.   How do the cells "know" when the elbow is finished, and to begin growing the lower arm?  Unknown--not really.

Until we figure out what controls these switches more fully? 

There is no way we can "read" DNA to the point the movie Gattica describes.

Nor, I strongly suspect, will we be able to determine how severe Autism could be in a potential autistic kid.   Slight autism can create fantastically-capable genius.   Severe autism creates hell-on-earth for the affected person.  If we figure out what section of DNA is affected, do we prune it all out, the possibly wiping out all potential Einsteins in the process?   Or do we tolerate (and subsequently care for) the occasional severe cases, to permit the emergence of that rare genius?

Who decides, here?   In Gattica, it appears that Big Business decided for us-- like it or no-- by the simple fact that Big Business demanded only the superior genetic person for it's major employees, leaving the rest to fend for themselves as best as they were able.

And I could easily see, if left unchecked, Capitalism doing exactly the same thing-- I've said many times, that uncontrolled capitalism is pure-evil.   It's like Atomic Fire-- it must be fettered and contained, or it becomes hell-on-earth.

(okay, I'll step down now... )

[Bluenose]

To pick up on Bib's point, I don't think we will ever be able to "read" DNA in the way that people often think.  I remember a discussion about the emergent behaviour we see in large flocks of flying birds which appear to have some over-riding control process going on that gives rise to apparently synchronised movement of the flock.  What has been shown, however, is that simply having local rules, applied locally, can give exactly the same behaviour.  In the birds case, something like "fly just about this close to the birds on each side, if they get about this much closer, fly roughly that way..." that sort of thing.  They have run computer simulations which reproduce the overall behaviour completely using just local rules.  So I suspect it is with DNA, it is a whole lot of local rules applied locally and none of the rules are exactly prescriptive, they are all "about this much" or "until something like this happens" that sort of thing.  Just as Bob describes in his examples.

We are guilty of believing what is called in the Science of Discworld* books "lies to children".  Most of our ideas about how the universe works are one form or another of lies to children.  In other words simplifications of reality that help make it more understandable, but which are not in actual fact correct.  it has been said before that if you think you understand quantum physics, you don't.  So it is with moist other things.  With DNA we use expressions like DNA code and genetic blueprint often forgetting that these are simply shorthand expressions that kinda sorta give the idea of what we are talking about.  However, in a very real sense these expressions are misleading because the reality they are describing does not have all the characteristics that the expression implies.  Bob has already explained why DNA is not a blueprint.  Similarly, DNA code implies that there is some kind of external influence that interprets the code (or indeed created it).  This is not the case.  DNA works because of chemistry, there is no outside interpreter of the "Code" it works the way it does because of the rules of chemistry - again, local rules applied locally.  Frankly I find thinking about how it all really does works - as imperfect as my understanding no doubt is - to be far more satisfying and truly wonderful than the card board cut out version generally presented in the popular press.




* I thoroughly recommend these books as excellent non-intimidating primers into much of science. Written completely for the ordinary person yet dealing with a whole lot of fundamental issues in science.  It helps if you enjoy the Diskworld as the books are written with alternate sections of normal prose and sections or narrative using humorous characters from Terry Pratchet's Discworld novels, usually the wizards.

[Bob in a quantum-state-of-faith]

Thanks, Blue, for the recommendation-- I'll post a link in my Books To Buy wishlist.  (which I try to keep going, as I'm always running to the end of a good book, and in search of the next)



By the way, your metaphor comparing DNA to birds flocking is a superb one--- perfect.   I must try to remember that, too:  "local rules for local effects".   Emergent properties are really what makes the world go 'round, are they not?



Edit-Edit:

Dammit Jim!  I'm a doctor, not a scribe!  That is not available for Kindle.  

(I'm unwilling to murder yet another tree in this way.... )*


Edit-edit-edit:  

nor is it, apparently, available as an audio book... *sigh*

edit-ed---meh:

According to Google Books (and I was all set to submit to Google's stuff too) states:  "No eBook available".... **sigh**




_{* in truth, it's mainly due to not wanting still more stuff than I already have...}

[Griffin NoName]

So it is with moist other things.  

Wet DNA ?