Scientists: It's Time To Resolve the Ethics of Editing Human Genome

An anonymous reader writes: We've previously discussed a system called CRISPR-cas9, which is dramatically reducing the cost and effort required to do gene editing. In fact, the barrier to entry is now so low that a group of biologists is calling for a moratorium on using the method to modify the human genome. Writing in the journal Science (abstract), the scientists warn that we've reached the point where the ethical questions surrounding DNA alteration can be put off no longer. David Baltimore, one of the group's members, said, "You could exert control over human heredity with this technique, and that is why we are raising the issue. ... I personally think we are just not smart enough — and won't be for a very long time — to feel comfortable about the consequences of changing heredity, even in a single individual." Another group of scientists called for a similar halt to human germline modification, and the International Society for Stem Cell Research says it agrees.

Comments

fathers

[bigdavex]

I can see fathers objecting to their daughter's suitors on the grounds that they are GMOs. They'll start to demand labeling.

Re:fathers

[Catbeller]

I once thought Bob Heinlein was a bit too cynical in "Friday", a world of the near future where designed humans - optimized for health, etc. - were considered subhuman ungodly creatures that were trained from birth to be subordinate to the point where Friday was trained to be a prostitute from birth. And once again, Grandfather knew his fellow Missourans well - and I must move my needle downwards again. A baby made in a back seat by two morons who can't find a condom is superior, "ethically" speaking, to a baby with maladapted genes removed.
I'm old enough to recall the moment where the "Genetic Ethics" profession was born. I believe it was when Dolly the sheep was born, the first mammalian clone that made it out of the chute alive. The "ethics" chair was created that week, and self-appointed experts at once popped up on TV to tell us what was right and what was wrong. The nature of journalists embraces the idea of the professional expert, so these carpetbaggers hopped up to take charge.
Most of the "ethicsists" are fundamental christian types or outright clergy, I'd guess from my Heinlein-trained cynical mind, as most media censors are. I do not take orders from them.

Re:fathers

[BarbaraHudson]

The worst part was that most of those self-appointed ethicists was that, just listening to them,, it should have been painfully the underlying objection was quasi-religious, No testing, no studies, no empirical evidence, just mental masturbation.

Ask anyone suffering from a chronic disease if they would like the genes involved to be edited out in their offspring - there will be plenty of motivated volunteers. After all, they have first-hand experience with what it's like with bad genes.

And yes, Heinlein was AMAZING !!!

Re:fathers

[GameboyRMH]

A baby made in a back seat by two morons who can't find a condom is superior, "ethically" speaking, to a baby with maladapted genes removed.

This. We've modified the human genome in most imaginable ways already, most often with no real aim, but the moment we do it intentionally and purposefully it's a big ethical problem?

Reminds me of the idiots who are categorically opposed to all geoengineering.

Re:fathers

[ColdWetDog]

Think Saurons, think SS shock troops, think of all the 'cool' things that humans have aspired to in the past (and future).

Now, just placing ethical constraints on these sorts of experiments won't get you very far. It's not like a full blown DNA lab is beyond any villainous billionaire with a volcano (or small country with some sort of GDP).

I suspect that in our children's lifetimes (not particularly ours, the technology is still pretty primitive and new) that genetically 'enhanced' humans will start to appear. Then it will seem like our dystopian science fiction authors were but Pollyannas.

Re: fathers

[websensei]

As if the chasm between haves and the have-nots wasn't wide enough already... now lucking into a wealthy family will get the "born on 3rd base" advantages amplified by an order of magnitude.

Specific consequences are impossible to predict, but I susect the kind of permanent, intergenerational inequality this would engender would not make for a more peaceful planet.

As a cancer survivor (grade 4 GBMO), I am a natural mutant with a lot at stake. But altering genes to prevent disease is not the same thing as optimizing your progeny's IQ or height.

Re: fathers

[Anonymous Coward]

You could make the same argument against all sorts of therapies. We wiped out polio and other diseases in the first world using vaccines, we mass produced antibiotics, and in so doing improved the quality of life for people in the first world. You could say "We should stop producing antibiotics and vaccines because people who can't afford them don't get the benefit!" -- If you wanted to really push it, you could claim "We should not use our knowledge of nutrition! It isn't fair that someone in the first world should know what to eat to be healthy when a poor person in a wartorn nation can't!"

But in reality, a rising tide lifts all boats. The same technologies that help those in the first world eventually become less expensive and are implemented in the developing world, and so the quality of life for all people is improved.

Look at cell phones. You could argue that their existence is a huge advantage to the most privileged people on earth, and by the logic you've presented, we should throw the technology away. However; that same technology is now being rapidly deployed to developing nations, and having that instant access to information is helping farmers get access to resources they simply didn't and couldn't have before. The tide is rising, and it's not just helping the richest people, but the poorest people have a better quality of life.

Re:fathers

[ultranova]

A baby made in a back seat by two morons who can't find a condom is superior, "ethically" speaking, to a baby with maladapted genes removed.

Which is bullshit. What's being debated is whether it's right to make experiments who's consequences a person who can't consent to them has to carry. If your attempt to remove "maladapted genes" ends up causing early-onset dementia, what are you going to do?

The two morons have a right to procreate. So far, every attempt to curtail that right has resulted in material fit to inspire horror writers. On the other hand, there's no fundamental right to perform human experiments on helpless victims.

Finally, even assuming realiable genetic technology, it's highly questionable whether human species is mature enough to take over trait selection from nature. Remember, it's these same morons who "can't find a condom" who get to custom design their kid. Do you believe the result would be an improvement?

Re:fathers

[ShanghaiBill]

What I find most disturbing is their presumption that "they" have the right to decide for "us". Each individual should decide for themselves what is and isn't done with their genome. It is nobody else's damn business.

Re:fathers

[Ambassador Kosh]

Using CRISPR-CAS9 you can modify an adult organism just fine. It is only in science fiction where this stuff can't only be done before birth.

Also this technology has only existed for a few years. Originally CRISPR-CAS9 was ABANDONED by the creators as not workable. It took others to prove it worked at a genetic engineering competition. Now it has becoming the standard by which we judge other techniques in about a year.

This stuff is moving faster than any of these prediction makers can imagine. I also have not ethical problems with genetic engineering on humans. It should follow the same rules as any other medication. We know some of the genes in your body that allow you to develop cancer in the first place and we know sequences that make better versions of the gene that essentially make you immune to cancer. The idea of getting an upgrade so that if you have cancer it will be cured and you could not get it again or get the treatment and never have to worry about it is GREAT.

We can do this for many other diseases beyond just cancer. Why shouldn't I work to make humans healthier, stronger, smarter, faster, longer lived? Why are these pathetic meat bags we are stuck in right now the pinnacle that can't be improved on? Screw that and screw the people that want to make it so these changes can't be made because no matter what people will continue to do this work and continue to make these enhancements. If you try to make it illegal it will only end up restricting access.

Re: fathers

[Ambassador Kosh]

CRISPR-CAS9 is CHEAP to duplicate. That is what makes it so easy to work with and why it is advancing the technology so quickly. These treatments will not just be for the wealthy, they will be for everyone. The companies working on this RIGHT NOW are not targeted at a tiny percent of people they are targeted at the bulk of the population.

Stop getting ideas from science fiction. I have not seen a single piece of science fiction yet that was even a tiny bit correct on genetic engineering. It is not expensive technology, it is not really even very hard to do once you understand how. Doing it on an adult organism is fine. The idea that this is only an enhancement that can be given before birth is ridiculous.

Re:fathers

[Eunuchswear]

Each individual should decide for themselves what is and isn't done with their genome. It is nobody else's damn business.

And, presumably, the business of the ofspring that you create with that genome.

If you screw it up be prepared to be sued.

Re:fathers

[Eunuchswear]

Your daughter is dating someone with a markedly bigger brain than yours?

Re:fathers

[the gnat]

Most of the "ethicsists" are fundamental christian types or outright clergy

The people writing the letter referred to in TFA are not professional ethicists at all - they are practicing scientists, including one of the people who figured out how the system in question works. (Disclaimer: I know one of them personally and I've had a handful of interactions with another.) If any one of them is at all religious, it's news to me. I'd guess they're totally in favor of genome editing in general, especially since several of them are involved in companies that have this goal. The ethical issue is whether to leap right into modifying embryos with an unproven and potentially unsafe technology, which amounts to experimentation on unwilling human test subjects.

Re:fathers

[the gnat]

I also have not ethical problems with genetic engineering on humans.

Do you have an ethical problem with genetically engineering an embryo and accidentally creating new problems that result in an individual crippled from birth, or doomed to a short and miserable life span?

Re:fathers

[Coren22]

I would imagine that if the scientists wanted to experiment to find what genes possibly cause Alzheimers, most people with that disease would gladly step up to be in the experimental group.

Re: fathers

[angel'o'sphere]

I guess you SF collection is then pretty smal :)

Re: fathers

[ArmoredDragon]

I have two chronic, heritable diseases, and yes, I would like them edited out.

Re:fathers

[rraylion]

ahhh.... the science is not done on CRISPR-CAS9 -- it works -- kind of, 60% of the time. Oh and if the cell it touches is in the middle of mitosis all bets are off on what mutation it will produce -- oh yeah it also has big problems with gamete cells, you know eggs and sperm. Oh yeah that right it also has this other isssue with....

CRISPR-CAS9 works in a lab in a controlled environment. very controlled. the science is moving faster no doubt, but its not there yet.

the second they get it down pat, i would love for more efficient mitochondria.

I'm all for this

[dixonpete]

Ask anyone with Cystic Fibrosis about the morality of gene editing.

Re:I'm all for this

[Chris Mattern]

Of course we can't cure all hereditary diseases at once with this. But the OP talked about Cystic Fibrosis; it's hard to think of a better candidate to use this technique on than CF. Cystic Fibrosis's genetic basis is simple and well understood. It's just one gene, which has been thoroughly studied. Editing it in germ plasm to eliminate it should not pose insurmountable obstacles.

Re:I'm all for this

[morgauxo]

But we don't want the DISEASES to benefit. We want to get rid of those!

Re:I'm all for this

[arth1]

I agree. There are many diseases that would really benefit from this.

I fear you are right, and that some diseases would benefit by our preventing other diseases. Given that our focus is usually on the "worst" diseases, on average the competition opens to more benign diseases, but there will be exceptions. And some relatively benign diseases that seems easy to cure might become a target for a genetic "quick fix" that might, unbeknownst to us, open up for other diseases.

The interaction between different diseases and genetic "flaws" is not well understood, but we know there are interactions. Like, for example, how sickle cell anemia gives increased resistance against malaria. There are likely a lot of genetic conditions that cause ailments that were introduced because they also gives an advantage, which at an early point was a net win for some individuals. We don't have the full picture yet, so I would say there is a risk, and especially if treating relatively "benign" conditions.

Re:I'm all for this

[Stem_Cell_Brad]

One point is that the off-target effects have a chance of messing up other parts of the genome while repairing the CFTR mutation. We still don't really have a good handle on how bad these off target effects are, and how to control them. So, until that is figured out, I don't think it is such a slam dunk decision.

If we can eliminate these concerns, then the decision seems rather simple in cases like CF.

Re:I'm all for this

[DarkOx]

There are a number of diseases like this, sickle cell comes to mind as well. Watch out though sickle cell does confer +1 malaria resistance and given the warming trends...

Re:I'm all for this

[ShanghaiBill]

One point is that the off-target effects have a chance of messing up other parts of the genome while repairing the CFTR mutation.

That is NOT their point. They are not saying we should hold off until technology improves. They are saying that, in principle, individual people should not be allowed to own and control their genome, and that a group of super smart elites, like maybe themselves, should decide what is right and wrong and then have the power to impose that decision on everyone else.

Re:I'm all for this

[arth1]

There are plenty of far less benign conditions to worry about before we get to Cickle-Cell anemia and bespoke babies. There's an ample supply of quite willing guinea pigs that have few other options (and those options are pretty grim).

Unfortunately, I fear that there are also a supply of quite willing and rich guinea pigs who want lesser problems fixed, or bespoke babies. Unless regulated, research tends to follow the money.

Lord Baltimore, eh?

[damn_registrars]

While this time he does have a point - there needs to be an ethical discussion - he is another character who has ruffled a lot of feathers after winning his Nobel Prize. He's up there with James Watson and Kary Mullis in the realms of prize winners who some of us wish would just go away so we can go back to just doing science.

Many people do not care, when money is involved

[hooiberg]

Even if scientists in the Western World ban human editing, there are many parts of the world (For example China; India; South America) where ethics are not always that high up the list of priorities. The technology will be used, as long as there is money to be made by doing so.

From that point of view, we might as well open up the technology for every one to use, and let everybody handle it as he or she sees fit.

Re:FRIST

[Chrisq]

post!!!!111111111111

Thanks to genetically engineered faster than human reaction times.

Re:The cat's out of the bag

[jimbolauski]

Before you can perfect editing the genome without side effects you are going to mess things up. That is the ethical dilemma that needs to be answered who do you practice on.

Unethical to ban

[Roger W Moore]

The fact that hereditary edits can me made, does not imply that we can immediately cure all hereditary diseases as well.

True but fatal, genetic diseases are a good reason not to ban use of the technique so that research on using it to cure them can proceed. However I would support strong regulation to limit it to cases where there is severe disability or greatly shortened life span. Indeed I would go as far as to say than an outright ban in these cases is unethical because of the potential to cure these diseases.

There may be risks for the first to undergo any treatments developed but this has to be set against the risk of certain death in some cases. We allow this to happen - with proper controls in place - for new drugs, why should this treatment be different?

Re:Unethical to ban

[the gnat]

I will continue to do work in this area and continue to work to improve humanity

Considering how little thought you've given to the potential downsides of such experiments, I'd guess that it's considerably more likely that you'll fuck up and produce a bunch of horribly malformed fetuses and live humans with fatal genetic problems. Fortunately, the ensuing lawsuits should put you out of business quickly.

Re:The cat's out of the bag

[Dr. Zim]

Before you can perfect editing the genome without side effects you are going to mess things up. That is the ethical dilemma that needs to be answered who do you practice on.

Certainly! But our* corporations have a pretty crappy record of balancing ethics and profits.

* Humankind's. No country or race has any claim to superior ethical behavior.

Sure, it doesn't affect me, but ZOMG "morals"!1!

[0xdeadbeef]

It's time to resolve the ethics of telling other people what they can and can't do with their own DNA and reproductive choices.

And the resolution is: you can butt right the fuck out. It's none of your god damned business.

Cowards!

[Graydyn Young]

These people want to put a stop to progress because they think humans are some kind of holy ground that must not be tred upon. Does anybody ever even consider the suffering caused by NOT pursuing gene mods?

I have to suspect that the real reason they are arguing against mods is that suffering and dying of muscular distrophy, or cystic fibrosis, or any other horrible genetic condition, is "natural".

Those people out there that are willing to accept the risks inherent to genetic modification shouldn't be limited by cowards that are OK with people dying, as long as they don't get their own hands dirty.

Needs animal testing/experimentation, not a ban.

[Rande]

My ethical problem would be that in the short-medium term, we don't understand what we're doing and will hurt more than we heal.
So need a few more decades with animal testing.

After that? Open the floodgates. Not everyone will want the 6'2" white blonde blueeyed children. I can see a market for catpeople, dogpeople, merpeople (colonise the oceans!); I'm sure there'll be one or two who want to incarnate Cthulu; wings capable of unaided flight might be difficult.
Never worry about being the wrong skin colour as everyone will be any colour of the rainbow - or even rainbow coloured!
Nightvision - eyeshine a reality!
Solar powered - get a lot of your daily calories just by standing naked in the sun.
Turn hair-growth on and off. Never have to shave again.

People who worry about eugenics are just lacking in imagination.

There is no debate.

[gestalt_n_pepper]

This technology will be developed to the point where traits like intelligence, disease resistance, emotional stability, beauty, et. al. will be almost guaranteed. If it's outlawed in one nation state, wealthy people will just have it done in another. Their children will benefit. The poor will be at a financial AND genetic disadvantage.

The hand wringing ethical concerns of "scientists" will have no effect on this whatsoever.

Re:There is no debate.

[0xdeadbeef]

The poor will be at a financial AND genetic disadvantage.

Which is precisely why they'll try to outlaw it. It's the only way it will remain expensive.

Morality Wizards

[JimSadler]

It seems that we have a group of people who just insist upon applying theories of morality to every little situation. We still have people protesting abortions for example. Yet none of the abortion protesters take into account what our population level would be like if we had not allowed abortions. Obviously the offspring would be a huge number and might have been such a great burden that our nation could not survive. The same thing can be said about subjects like the Civil War. Without that war we surely would have now had several hundred million extra Americans. War is not completely negative. Pregnancy is not completely positive. Weak minds latching onto an absolute position simply demonstrate the absurdity of modern life. Yet we have numerous pumpkin headed citizens that fixate on really stupid issues and just make their entire life all about pushing some supposedly moral platform. As far as the human genome goes we can store it and revert back to unedited DNA any time we like. It is simply a matter of not allowing people to reproduce who have had unwanted consequences from edited genes.

Re:Good luck

[jedidiah]

...except no genetic tinkering is required for that option. It's already readily acheivable now. It's already been implemented by industrial food makers with help from the US government (food pyramid).

Re:A half billion years too late, I think

[blue9steel]

As for genetic modification of crops.

It's not the modification itself that bothers me, it's the total lack of long term study requirements and no efforts to avoid cross pollination with traditional crops. Sure, maybe plants that produce their own insecticide are the bees knees and totally safe, or maybe they build up toxins in the environment like DDT did and we'll all be getting horrible cancers in thirty years. Personally, I'd just like there to be a bit more science involved then, yes Fish genes are safe, Tomato genes are safe so Fish genes + Tomato genes are safe.

Re:Science Fiction Fear.

[blue9steel]

However the goal for Genetic Manipulation in humans, isn't making someone a super human, but an average human.

That may be your goal but I guarantee it won't be the goal of the people with the most money available to invest in this technology. Life extension or more gifted children will be their primary wants.

Re:A half billion years too late, I think

[Ambassador Kosh]

We screw up with EVERY medicine we make. We KILL people during the development. NOTHING we do can change that. Many of the people I know working on drug development do everything they can imagine to make sure it does not happen but it still does and with each drug we learn something new. In almost all cases the deaths are from things we could not predict ahead of time. We learn, add it to how we do things and don't make the same mistake again.