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Roughly one out of every 4,000 children in the United States develops a mitochondrial disease before the age of 10. These genetic diseases are inherited mutations, and cause symptoms as wide-ranging as loss of muscle coordination, vision and hearing problems, diabetes, learning disabilities, and dementia. There is no known cure for mitochondrial diseases.
Now, researchers at Oregon Health and Science University have developed a new kind of genetic therapy that's meant to keep these diseases from getting passed down from mother to child. The procedure uses techniques drawn from cloning, and a paper on the study, published in Nature, made headlines last week. Working with rhesus macaque monkeys, scientists successfully substituted healthy donor mitochondria in place of a female's defective genes. This allowed her to pass on her DNA to her baby, without passing on the defective mitochondria.
The research brings up many ethical and legal questions: ethicists are asking if people should be able to make genetic alternations for generations to come. They point out that this modification eliminates one type of genetic disease, but worry it opens the door to the possibility of tinkering with DNA to select for genetic advantages.
Do you have a mitochondrial disease, or do you know someone who does? If it were available, would you consider this procedure when planning to have a child? Where would you draw the line when choosing the traits you want your children to have?
GUESTS:
- Shoukhrat Mitolipov: Associate scientist in the Division of Reproductive Sciences at the Oregon National Primate Research Center
- Marcy Darnovsky: Associate executive director at the Center for Genetics and Society
Photo credit: Exothermic / Creative Commons
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"Safety" in the sense of screwing up genes and doing more harm to someone than good?
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slakr007,
The genes are already screwed up, this is an attempt at a fix. If the people involved know the risks, then I don't see a problem.
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That was more of a splitting-hairs question...were you talking about safety of the procedure or safety in the long-term? The procedure might be unsafe in the short-term and immediately cause death in humans. The procedure might be unsafe in the long-term; the person seems healthy are perfect...then, at age 35, he/she dies suddenly. In those 35 years when we think the treatment is great and wonderful, how many people are treated if the statistics say 1 in 4000 people have such mutations?
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slakr007,
I was talking about safety in general, which includes both the short and long-term. If people die at 35, then they die at 35. And if they die suddenly they won't know the difference. If the parents know the risk, then it is up to them whether the risk is acceptable.
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If the consequences are not known until 35 years later (just a random number), then do the researchers really know the risks? If the researchers do not know the risks...worse yet, think there are no risks...then the parents cannot know the risks.
It's certainly not unprecedented that a medication or treatment would be used without even an understanding of a fraction of the real risks.
It was especially frightening that the good doctor claimed to think the procedure was 99% safe. Not only because of the likelihood of overconfidence, but also because 99% safe can mean many many things.
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My ethical objections lie not with the science, but with the abuse of animals for human gain.
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This concept raises some very disturbing issues; the potential consequences of opening the door to human genetic engineering is but one.
Right now, human activities are affecting our planet and its ecology on a scale too vast to be grasped. We are witnessing a rate of the extinction of species unparalleled in recorded history and not seen, in geologic terms, for hundreds of thousands of years. We are using up our planet's resources and polluting our environment in ways that will take decades, centuries or millenia to heal.
The silent elephant in the room, and the exacerbating factor in every one of the problems we are creating for ourselves and our planet is that of overpopulation. What will happen when we can re-engineer ourselves to optimize our own survival and extend our own longevity?
Humans have a long history of wielding technologies without having attained the wisdom with which to properly do so; one has only to look at our world to see many of the drastic effects of this pattern. The benefits that could be derived from this sort of research are quite attractive, but I am acutely aware of the potentially disasterous consequences of allowing a species as short-sighted, mercurial and profit-motivated as ours to re-engineer itself.
(NOTE: Should you read this on-air, "Valdaquende" is pronounced "val-de-kwen-duh")
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In a world of 6+ billion persons, the simplest solution is for those with genetic diseases to forego having children altogether, as I have done.
I personally felt that it was my duty not to burden society with children at risk for autism & alcoholism; especially since the world is overpopulated anyway.
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Well said.
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FairTrade49,
At what population level would something like this be okay? If there were one thousand, one million or one billion people? Would that change the argument?
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Where is the critical point when we should stop trying to cure diseases? Not to belittle the work done, but should we really strive to eliminate any and all diseases?
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Why should there be a point at all when we should stop trying to cure diseases?
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Odd question from you. You told me once you wanted 99% of humans to disappear.
How much longer should our lives be? How many more babies of ours should be born healthy? How many more people can we support...not just in terms of food and nature, but in political, educational, and financial terms.
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slakr007,
Nothing odd about it at all. Perhaps I understated it previously: I now think 100% of humans are worthless (to me!). I've also grown to hate myself (and some others) in the meantime. At any rate I don't get to decide who lives and dies---that goes a big step too far.
How much shorter should our lives be? How much longer should our lives be? How the hell should I know? Do you know something I don't? If we keep going and the quality of life is worth living: then great. If everyone could be born healthy: then great. What is the difference? How does this topic have anything to do with more people? Are we supposed to stop trying to cure diseases because of population concerns? And you propose: a misanthrope like myself, should endorse that? No go!
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I don't know anything more than you. And, I'm not asking you to endorse anything. It's just a question.
Medical science has greatly contributed to population increase and greatly contributed to our standard of living increase. But, I cannot imagine that both of those can always be increasing.
<shrug>
I don't know...Wikipedia says there are population models that say the world population will stop increasing in 2050. Of course, that could go right out the window if, say, we cure cancer.
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slakr007,
Sorry, if I seemed overly sarcastic. That's my world.
Just because I don't like people much, doesn't mean I think it justifies us giving up, or not trying to make things better or different.
Population, if it needs control, is a separate issue (and must remain so) from trying to cure disease. If we want to limit people from having numerous children that is one thing, but to tell people, that in order to control population we are not going to try and stop a disease from spreading to their potential children, seems arbitrary and in my view is an ethical nightmare. Because you could also say 'why treat any reproductive issues in general?' I think medicine probably has an obligation to treat the whole person, not just the parts we want to function effectively or we feel are useful to society.
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While I understand all the ethical arguments against this type of genetic engineering, this is clearly an important line of research to follow. If research and results have proven prevention of diseases, I would support human trials of tested embryos. Let's move science FORWARD. I've had a number of friends lose the battle with cancer and knowing there is a shread of REAL HOPE out there towards a cure - I think it would be unethical NOT to use this knowledge for medical advancements in all types of disease prevention.
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People who eager to judge science are the ones who not affected by mitohondrial mutation. You should ask people who sick, their famalies. What if there would be genetic cure for cancer? I bet the critics would be first in line to make sure they never have cancer in the future.
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I am a huge believer in science. It's the only thing I believe in. But, there are two ways to look at this: what is good for you and what is good for society as a whole.
When you start meddling at this level, the effects on society can be much larger and destructive than we understand. We should not let empathy override critical analysis of science.
Looking critically at science and challenging it is not a judgement against science. It is actually what makes science works.
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I completely honor the discussion regarding overpopulation, my support for this work has to do with changing the quality of lives that will be lived regardless . . .
I once worked for a family whose first child was born with Fragile X syndrome. The mother did not know she was a carrier and the family did not get a positive diagnosis until after their second child was born (fortunately, he did not exhibit the disorder).
Obviously, the family chose not to have any more children, however, the rest of thier years will be given to the therapy and care of thier first child. While I loved spending time with him in our sessions of physical therapy and play, I know that the entire family: father, mother, brother, extended family would be saved an entire generation of suffering if this disease could have been prevented.
The challenges:
1. I don't know if Fragile X syndrome is of mitochondrial origination
2. The mother did not know that she was a carrier (would we all go through genetic testing at some time prior to procriation) Heck, I would be OK with application for reproduction and a limit to the number of children born (but I'm probably not too popular in my ideas).
In conclusion, I support research that reduces suffering that does not increase population. There's enough suffering in the world already.
peace,
SH
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Marcy Darnovsky is talking about human life as if it was sacred. As if human life was more then what it is. Things come and go. If we all die, we all die. To say this would be abnormal is to know more then one could possibly know.
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When I first heard about this new development, my thought was "how cool!" and then I thought...."unless the world becomes a real life Gattaca" But my question about the abuse of power through gene manipulation and therapy on such a large scale is ridiculous, thus the argument has only been relegated to science fiction films.
Let's get real here, in the near future, the only people who would be able to afford this kind of gene therapy aren't the people who are contributing, on a large scale, to planet overpopulation...they will probably only have 1 maybe 2 kids, and the clientele will probably be the sort who are are going to spend their life as active parents, educating and providing for their children, because it's clear that they care enough to go through gene therapy in the first place.
Then for the next generation, ideally, gene therapy won't matter...it's like the polio vaccine, eventually , no one ever got polio, because, well, we were all inoculated.
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I have read that mitochondrial dna comes exclusively from the mother. That means that there should be no surprise about which mitochondrial dna all the mothers offspring will get, and which diseases they can expect. How does that affect ethical issues?
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TOL producers were quite unfair in their pairing of Dr. Militopov with Marcy Darnovsky. While he was interested in the technical details of solving a specific biomedical problem, he was ill-prepared to deal with the kitchen-sink FUD (fear, uncertainty and doubt) attack from Ms. Darnovsky.
We got "designer babies", "genetic engineering" and even a mention of the Nazis! Way to play fair, Ms. Darnovsky! Your place in the Argumentation in Bad Faith Hall of Fame is well deserved.
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Comments are now closed.
This is really a simple ethical issue, its complexity is an illusion created by our collective and repressive primitivism. What are the ethical objections? The only objection seems to be a functional one of safety, which is not entirely ethical in nature. Taking safety out of the debate, what are the objections?