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Society-wide health controls vrs the individual.

  
 
Evil Scientist
11:43 / 15.06.05
Now I accept that I'm opening up a real can of worms with this one. But let me make my position clear, I am not advocating this kind of control as something that could be set up in a free and democratic society. Neither am I of the opinion that people should be treated as anything other than equals no matter what their health status.

That said.

There are a wide number of diseases which are transmissable from the parent to the child. In some cases the disease may be as a result of a micro-organism infecting the child from the parent. In others it is as a result of a genetically inherited condition that is passed on by one or both of the parents.

Is it right for people who have conditions that result in premature death to pass these conditions onto their children? Should it not be a legitimate concern that diseases which could be erradicated by one generation agreeing not to produce children that carry the genetic disorder are in fact continuing to plague us?

Now, please note, this is not something that could be applied to every inherited disease. Obviously only the ones where the cause is specifically related to an identified genetic sequence. You couldn't use this process to reduce levels of, for instance, schizophrenia.

Let me hear your thoughts (but don't shoot me, I'm just playing Devil's Advocate).
 
 
nyarlathotep's shoe horn
17:40 / 18.06.05
hey evil,

I know it's not your p.o.v. on this, but there's an undercurrent of eugenics that twigs my ninny.

I have my doubts as to the whole mechanism of genetically inheritable disorders. I'm not sure if this isn't another case of attempting to cure the disease by addressing the symptoms - where the symptoms = the genetically inheritable trait/weakness/predisposition and the disease = the greater influences on our genetic makeup (ie environmental & historical factors).

I don't have enough faith in our understanding of the mechanisms involved to espouse a doctrine of preemptive "curing."

plus, we're preventing another life form, (virus, bacteria) from expressing itself. Instead of strengthening our immune systems to resist the disease, we kill the disease, and weaken ourselves.

(I'm not a fan of innoculations either, but, again, in some cases, they help to bolster us against epidemics).

I think the most dangerous characteristic passed from parent to child is willful ignorance.

good topic tho.

>pablo
 
 
All Acting Regiment
20:27 / 19.06.05
Well, for starters, you couldn't get a whole generation to agree not to have kids, it just wouldn't happen, though I'm sure you realise that.

If you did stop them having kids, yeah, the disease wouldn't be around, but there could be something worse. Or the same thing could come back somewhere else. Where there's a niche in the market, nature provides.

And what about these kids who never get to exist? What if they could grow up to solve the world hunger problem, for example, or something equally important? Or maybe they just lead a happy life despite their diseases. Who knows? The point is, who has the right to destroy those possibilities?

This links into a bit of Foucault, where he noted that where once society tried to get rid of lepers and madmen by sending them out of the community of the city, into the wild country, to fend for themselves, giving them total freedom with no help. Whereas now the trend is to contain, isolate, within the institution; to give them total restraint, decide everything for them- without giving them any say in it.

For the authoritys to eradicate a generation because of a genetic disease is essentially the latter concept taken to extremes. Who has the authority to decide that a generation will be made totally unhappy and worthless by a single disease?
 
 
sdv (non-human)
10:04 / 20.06.05
Evil,

Your logic is extreme and questionable because it seperates the notion of genetically inheritable diseases (GID) from other healthcare issues. However even without fully exploring this aren't you also not addressing the other potential side effects - one of the relevant scientific issues is the risk associated with effects of direct intervention into the human genome. (Experiments in the genetics of Mice has recently emphasized this uncertainty of side effects.) The human genome is remarkably undiverse in comparision to other widely spread species and sub-species, what you suggest would cause a further flatterning of the human genome - is this advisable ? or will we need to establish human control communities who are not genetically manipulated, or human gene banks in case of disaster ?

The immediate social and political question is to ask why not just argue for the banning of all drugs taken for pleasure throughout the planet - i.e. Tobacco and alcohol. This would extend the average human life to a much greater extent than eradicating GIDs which may well have additional effects that we cannot possibly anticipate.

s
 
 
Red Concrete
14:00 / 18.03.07
Following on from the recent convo Incest thread which became a bit of a discussion on genetic disease, and the ethics of having offspring at high risk of disease, I did a lot of reading up on Huntington's Disease, a rare dominant genetic disorder.

It is an interesting case as it fits Evil Scientist's original idea of a disease that could be eliminated if everyone was tested, and the long-repeaters were prevented from breeding.

As happens, there is a NYT article today which I found quite moving, and shocking in places. The article follows a young woman with HD in the family, who became more and more interested in the disease, and decided to be tested for the gene. I highly recommend it.

Maybe we can make this thread a discussion of individual choice versus social/institutional rules in these situations. This young woman decided to be tested despite (or maybe because of) her family's refusal to discuss the history of HD. She struggles to cope with her knowledge that she has about 12 years before onset, but she does cope despite the fact that suddenly everything is different - dating, work (in a HD clinic), relationship with friends - and despite the shocking "advice" by some sort of "therapist"...

I find her example uplifting - not because of the tone of the article or any empathy with her position, but because she's making her own path through life. It is very easy for us scientists to be too objective when we think, for example, "Wouldn't it be great if this disease didn't exist? How can we do that?". It is very easy for a committee deciding on the guidelines for genetic counsellors / therapists, to think "We have an ethical duty to society to reduce disease prevalence, therefore we recommend that people with a 50% chance of passing HD onto their children don't breed". But very wrong, I would argue.

Anyone have thoughts on this? Any questions about the biology? (I did my phd on and now work in medical genetics, particularly of neurological/psychiatric diseases)
 
 
Red Concrete
12:59 / 21.03.07
Does no one have an opinion? What if anyone who had a heritable disease with a two-fold increased risk that their children will also have it, was told by their doctor that they shouldn't have children? (You might be surprised how many common diseases that covers)

What if your insurance company told you to get tested for a range of genetic diseases before they would renew your policy? Anyone have any experience of this happening?

Or your employer, if they offer health insurance (US specific, probably)?
 
 
Evil Scientist
13:26 / 21.03.07
Does no one have an opinion? What if anyone who had a heritable disease with a two-fold increased risk that their children will also have it, was told by their doctor that they shouldn't have children? (You might be surprised how many common diseases that covers)

What if your insurance company told you to get tested for a range of genetic diseases before they would renew your policy? Anyone have any experience of this happening?

Or your employer, if they offer health insurance (US specific, probably)?

Well, what I was talking about above was inheritable diseases which are the result of a specific, identifiable, genetic sequence. A possible tendency for a familiy (for eg) to be vulnerable to (again, for eg) heart disease is the result of numerous factors, not due to a genetic trait alone.

Insurance company's already, as far as I am aware, quiz prospective clients on the history of disease within their family and make adjustments based on their results.

I'd be against insurance companys being able to demand that people submit to tests to identify possible future diseases. But that, surely, is something that could be legislated against?
 
 
HeartShadow
16:32 / 21.03.07
Well, let's look at sickle cell anemia for an example. And why it's so much more prevalent in some ethnic groups and not others.

With only one expression of the gene for sickle cell, there's a HUGE boost against malaria. So if sickle cell's in the family, odds are good your family's protected against malaria. Sucks to be the sick kids, or family of the sick kids, etc. But removing sickle cell from the genome would remove the security against malaria, too.

Now, it's easy to say "so what! we have better ways of dealing with malaria!" but the point is, we don't know what OTHER pieces of the genome do things like that too.

I think it would be a matter of each person's conscious to decide whether or not to have children if there's a high risk of genetic disease in the family. If the odds were high that I'd inherited my mother's eyes, I'd've thought much more about whether to have biological children vs. adoption, and that's not even life threatening (until she gets behind the wheel!). Were it a more deadly or life-altering disease, I would have thought longer.

But that doesn't mean that everyone would make the same decision I would. And it doesn't make it the "right" decision, either.
 
 
Red Concrete
21:03 / 21.03.07
Good points.

Evil: Well, what I was talking about above was inheritable diseases which are the result of a specific, identifiable, genetic sequence. A possible tendency for a familiy (for eg) to be vulnerable to (again, for eg) heart disease is the result of numerous factors, not due to a genetic trait alone.

I agree that probably the moral aspect to eliminating disease is reversed when you switch focus from genetic, innate, inevitable factors, to avoidable environmental factors. But probably these issues extend to some cases of environmental risk, and the role of society. Should smokers or the obese be given lower priority in healthcare?

Also, I'm sure you can see that genetics and environment have many subtle interactions. For example, risk for addictive behaviour, for obesity, mental illnesses are partly genetic, and thereby genetics can "predispose" for exposure to environmental, avoidable risk factors for secondary disease.

Insurance company's already, as far as I am aware, quiz prospective clients on the history of disease within their family and make adjustments based on their results.

I'd be against insurance companys being able to demand that people submit to tests to identify possible future diseases. But that, surely, is something that could be legislated against?

Yes, but quizzing for family history is a proxy for genetic risk factors. Is there a line to be drawn between different ways of acquiring that knowledge? I know that there is legislation against this, in some places at least, although I'm not sure how fully planned/impelmented it is today.

HeartShadow: If the odds were high that I'd inherited my mother's eyes, I'd've thought much more about whether to have biological children vs. adoption

OK, I'm not sure how genetic vision problems are, or how much of a hidden benefit there might be behind the trait. But if there's a risk to your mother (and to society too), she should be banned from driving.

But, there are ways of estimating which parts of the genome are selected for, and which are selected against. I wouldn't want to be in a position of having to weigh the pros against the cons of a disease-causing gene. Nature does so in the most brutal way possible - using gross survival rates (and possibly other things) as a measure of how "good" a gene is. Humans have tried to weigh other factors into the equation - quality of life, social equality, and unfortunately cost of treatment also... But thus far, they've done so without (much) knowledge of the specific innate factors involved.
 
 
Evil Scientist
07:36 / 22.03.07
Should smokers or the obese be given lower priority in healthcare?

Not really relevant to the discussion though as I never suggested people with inheritable conditions be given lower priority in healthcare.
 
 
Red Concrete
08:08 / 22.03.07
It's perfectly relevant to the title of the thread, I thought. ...and, what discussion?
 
 
jentacular dreams
10:40 / 22.03.07
On the genetic side I think it's probably worth distinguishing between dominant and recessive conditions here. Most dominant diseases could theoretically be stopped 'easily' in a single generation, but do not usually/noticably express themselves until after the age of fertilisation. For all recessive conditions, it is near impossible to tell whether an individual carries one copy of the disease gene without taking samples. Therefore the only way to determine who carried the disease genes in both cases before they concieve a child is through genetic testing, and either asking the carriers to avoid procreation or outlawing it (the only way to enforce this would of course be forced sterilisation* or abortion**).

This might be easy in the case of say, micro-organism postive parents, who's child might be guaranteed to contract the condition, or dominant gene carriers, who have a 50% chance of concieving a child who will suffer from the same condition. But recessive conditions only result in a 25% chance of expression and I can see such parents being relucatnt to accept such an option. Of course both could be solved with selective IVF (barring cost and religious issues for the moment).

Legislation could be enacted forbidding insurance companies access to the genetic data (though currently US companies demand access to medical data), but they are still allowed to calculate odds on other factors. As a result, having a family would become an indicator of low(er?) risk, and the weighting such was given would shift enormously. Therefore childless non-carriers would also suffer higher premiums (especially couples***).

Then there's severity. Obviously all genetic diseases don't have the same impact. Where do we draw the line. Is pale skin and it's proclivity towards skin cancer a genetic disease?

And then there's treatments. A lot of sterling multi-application work is developed through funding to tackle a single condition. Lose the conditions = loss of funding = slower developments. And we are just starting to enter the age of gene therapy/modification, RNAi work suggests we can knock-down dominant genes in cells, including virus genes such as HIV. At the moment such work has limited expression in mammals (though viral-plasmid transfection with the gene for the siRNA last much longer). Of course RNAi is just a stop-gap measure. It may mean the individual lives much longer, and possibly even never suffers from the condition during their lifetime, but they and their affected offspring would possibly require numerous treatments. But progress is happening. To enforce such a radical programme now would be a bit of a pity.

Finally, there's practicality. Not social practicality, not political practicality, but scientific practicality. What proportion of the population carries a gene for one genetic disease or another? Even if taking all these genes out of circulation was feasible (tip of the hat to HeartShadow), hello population bottleneck! I mean personally I think there's probably at least 2 billion too many humans for the planet to sustainably support, but 'm not sure that's the best way to redress the problem, especially since it would probably mean a population much lower than that required to maintain a global society (maybe even in the mere thousands).

Related commentary:
1) Allecto - to play devil's advocate myself for a moment, aren't your points essentially the (non-religious) argument against abortion? Obviously not all the counter-arguments apply, but thought it was worth noting.

2) As lifespans are increased, were such a massive elimination of disease genes carried out, is it not likely we would just find other genetic diseases that kick in when we're in our 120s or suchlike?

3) On a similar subject (and one I'm having trouble putting into the proper words) - complex gene-interactions that result in disease (i.e. mutations in gene A or B or C alone have no effect [or even a positive one], and are passed on without negative/by positive selection, combine them and you get a severe failure of a gene****). Such single mutations may buildup in individual populations with no ill effect, but as we are starting to see more and more in the way of intercontinental marriages, does anyone know if the prevalence of such gene failures is increasing or likely to increase?


* for either the prospective parent or any positive testing child
** of positive testing embryos. Obviously the chance of such a law being passed in all nations are, er, somewhat slim (and rightly so).
*** how this would affect same-sex couples I would hesitate to guess
**** there are examples but I can't remember them at the moment.
 
 
Red Concrete
16:49 / 22.03.07
complex gene-interactions

Yes - and this covers most common genetic disease - most psychiatric/neurological disorders, diabetes, heritable cancers, etc... there's no practical way that these diseases could be eliminated from the population as the probability is high that ever single one of us have a risk allele for one or other of them.

Risk alleles for complex disorders can accumulate (or possibly, not be selected out) in isolated populations, but this has I think only been seen where environmental causes have shifted, and suddenly these neutral mutations become risk factors. The instances I'm thinking of are diabetes and obesity in certain native american populations, parallel to adoption of "european" dietary habits (or rather, modern US diet).

I've never heard of disease rates increasing in intercontinental matings, and I can't think of any mechanism for it that would have a large likelihood.
 
 
HeartShadow
17:33 / 22.03.07
Disease rates would probably go DOWN as people marry/ bear children outside their ethnic groups.

A lot of the really nasty diseases are held only within certain ethnic groups: Tay-sachs, sickle cell anemia .. I think there's a third they were talking about when I had my son, but I can't remember which. But the question was about ethnic groups, because they're recessive. If you're mating outside your ethnic group, odds are pretty good you don't both have the dangerous allele!
 
 
jentacular dreams
11:39 / 23.03.07
Sorry, I miscommunicated. Of course a child which is the product of a union between individuals from two populations has a lower chance of having two copies of many recessive alleles (see the relevant section of the SBR:incest thread). I was wondering though if mutations in seperate genes, each by themselves harmless but problematic when combined, might buildup in different populations (through bottlenecks etc) and whether therefore the children of parents from different populations might be at greater risk of such problems (i.e. would this to a very small extent offset the adventages of procreation outside one's own gene pool? Obviously this is not intended to become the focus of the thread, it was just a possibility that occured to me while I was doing some reading.
 
 
Red Concrete
17:43 / 23.03.07
Beeline, it's an interesting thought. You would have to have one gene increased in one population (by bottleneck, or genetic drift or something). And the same for another gene in another population. And those two genes would have to interact (statistical interaction that is) to increase disease risk to above that for a homozygote for either of the genes alone. I'd say if it happened often we would have heard of it happening. Of course if you add more genes into the model, the probability of the situation arising would decrease quite fast.
 
  
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