# A Gene-Editing Experiment Let These Patients With Vision Loss See Color Again



## Scoobyscoob (Sep 4, 2016)

mia-me said:


> This was added after I had responded.
> 
> Something like 97% of our DNA wasn't mapped since at the time, scientists considered it to be junk DNA. They've subsequently amended their position since they've found a lot of applicable DNA.


Over 90% of the human genome was sequenced during the Human Genome Project.


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> New technology seems to create fear which usually manifests in class conflict. And I suppose injustice? Most people I know wouldn't frame the dilemma that way but I guess that is true in a way. Also, otherwise that's what laws are for.


That's because new tech hasn't been properly evaluated, relative to ethical considerations. Once that happens, laws will be written to mitigate the negative impacts from predatory practices.


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## Scoobyscoob (Sep 4, 2016)

Electra said:


> I was tought this by my teacher at school. Blame her 😄 it was also a part of the curriculum.


It's certainly a possibility but one I don't find to be too likely. Also, laws could be passed to prevent that from ever becoming a reality.


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> Over 90% of the human genome was sequenced during the Human Genome Project.


Look into junk DNA. I've already addressed this with tan.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> That's because new tech hasn't been properly evaluated, relative to ethical considerations. Once that happens, laws will be written to mitigate the negative impacts from predatory practices.


Yes and the reality never seems to be as bad as people seem to imagine it to be. 😉


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> Yes and the reality never seems to be as bad as people seem to imagine it to be.


More often than not, the reality is often worse since humans never appear to hit bottom in their search for power and money.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> Look into junk DNA. I've already addressed this with tan.


"Junk DNA" was still sequenced. It was just assumed at the time to not be useful and that was later determined to not be true.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> More often than not, the reality is often worse since humans never appear to hit bottom in their search for power and money.


Has the steam engine, refrigeration, automobile, telephones, cell phones, the internet, modern medicine somehow ruined your life? 😉 Yeah sure, greed is bad when it comes to human health but most countries have limits to how much greed can affect the welfare of a society.


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> "Junk DNA" was still sequenced. It was just assumed at the time to not be useful and that was later determined to not be true.


No, it wasn't.


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## Electra (Oct 24, 2014)

Scoobyscoob said:


> It's certainly a possibility but one I don't find to be too likely. Also, laws could be passed to prevent that from ever becoming a reality.


What? I don't understand shat you meen.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> No, it wasn't.


Are facts not your thing?









A complete human genome sequence is close: how scientists filled in the gaps


Researchers added 200 million DNA base pairs and 115 protein-coding genes — but they’ve yet to entirely sequence the Y chromosome.




www.nature.com


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## Scoobyscoob (Sep 4, 2016)

Electra said:


> What? I don't understand shat you meen.


What I said, try reading it again. 🙂


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## Electra (Oct 24, 2014)

Scoobyscoob said:


> What I said, try reading it again. 🙂


Well, its luckily we live in a democracy where everyone is entitled to an oppinion of there own and freedom of speech! So don't worry about speaking you opinion


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## Scoobyscoob (Sep 4, 2016)

Electra said:


> Well, its luckily we live in a democracy where everyone is entitled to an oppinion of there own and freedom of speech! So don't worry about speaking you opinion


Yes. 🙂


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> Are facts not your thing?
> 
> 
> 
> ...


Your initial claim was that the human genome project had sequenced 90% which was inaccurate since they didn't and couldn't sequence junk DNA. Also, notice how you've linked to something from June 2021? This is separate from the human genome project. Also, there's still more to sequence as expressed within your linked source (Y chromosomes aka the male side).

With all this in mind, do you now understand my concern?


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> Your initial claim was that the human genome project had sequenced 90% which was inaccurate since they didn't and couldn't sequence junk DNA. Also, notice how you've linked to something from June 2021? This is separate from the human genome project. Also, there's still more to sequence as expressed within your linked source (Y chromosomes aka the male side).
> 
> With all this in mind, do you now understand my concern?


Most of the human genome has been sequenced, but getting that last 10% will take a long time because there are a lot of unique DNA samples to be sequenced.. Also what you're referring to is mapping the human genome, which is still in its infancy.


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> Most of the human genome has been sequenced, but getting that last 10% will take a long time because there are a lot of unique DNA samples to be sequenced.. Also what you're referring to is mapping the human genome, which is still in its infancy.


It's all extremely important since once edited, there's impact on the patients' lineage for future generations. Using nanoscissors in such a precision manner, what could possibly go wrong without enforced guidelines?


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## Electra (Oct 24, 2014)

Now lets say there was a family member who had a hugh risk of getting a deadly disease but the treatment involved another condition that was just as bad. Would you want to choose between pest and cholera so to speak? Would you want to know?
Norway has forbidden 23 and me to inform us about the geneticly inherited deadly diseases


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> It's all extremely important since once edited, there's impact on the patients' lineage for future generations. Using nanoscissors in such a precision manner, what could possibly go wrong without enforced guidelines?


Yeah, true. Which is why actual editing of genes is limited to curing life threatening diseases that are genetic in origin or as with the article in the OP, partially curing a degenerative disease that's genetic in origin.


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> Yeah, true. Which is why actual editing of genes is limited to curing life threatening diseases that are genetic in origin or as with the article in the OP, partially curing a degenerative disease that's genetic in origin.


In the situation of HIV, not everyone's guaranteed to contract it. Now the lives of his daughters and their children have been shortened over potentially...nothing. Time will also tell if there are other unintended consequences.

For the woman in the opening post, not sure if she'll be breeding but if so, they need to observe her and any future progeny.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> In the situation of HIV, not everyone's guaranteed to contract it. Now the lives of his daughters and their children have been shortened over potentially...nothing. Time will also tell if there are other unintended consequences.
> 
> For the woman in the opening post, not sure if she'll be breeding but if so, they need to observe her and any future progeny.


I didn't read the article but from what Electra said, the dad has HIV so otherwise would not be able to have children without also having HIV so they would've otherwise died.

The lady in the article in the OP is 55 so I doubt she would have kids. The article is about her regaining some of her vision using CRISPR, not HIV immune CRISPR edited embryos or editing humans or whatever else was brought up in this thread. 🤣


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> I didn't read the article but from what Electra said, the dad has HIV so otherwise would not be able to have children without also having HIV so they would've otherwise died.


HIV has the potential to follow the mother in pregnancy (womb - fluids), not the father.



> The lady in the article in the OP is 55 so I doubt she would have kids. The article is about her regaining some of her vision using CRISPR, not HIV immune CRISPR edited embryos or editing humans or whatever else was brought up in this thread.


Good. Then they need to observe her for any unintended consequences for life.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> HIV has the potential to follow the mother in pregnancy (womb - fluids), not the father.


I'm pretty sure the embryos would have been fertilized in vitro then implanted in the mother. So there wouldn't be a chance of transmitting from baby to mother.



> Good. Then they need to observe her for any unintended consequences for life.


You and Electra have really veered this thread into something stranger than what I intended. 😄 The article in the OP is about partially restoring vision to a blind woman, not about someone having kids and needing to be monitored for generations. 🤣


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> I'm pretty sure the embryos would have been fertilized in vitro then implanted in the mother. So there wouldn't be a chance of transmitting from baby to mother.


Your claim was that the father had a valid reason since he had HIV so he was concerned about transmitting the disease to his daughters. My point was that his concern was invalid since fathers can't transit HIV to their children through the pregnancy process, only the mothers can transmit HIV to their children.


> You and Electra have really veered this thread into something stranger than what I intended. The article in the OP is about partially restoring vision to a blind woman, not about someone having kids and needing to be monitored for generations.


Unintended consequences and ethical concerns need to be discussed, relative to CRISPR treatments, considering the sheer amount that we don't know about our genes. That gene editing can affect not only the patient but future generations, is also relevant since if people want to maim, harm or kill themselves, that's fine if it happens in a vacuum. But...with CRISPR treatments, it doesn't happen in a vacuum unless patients are willing to be sterilized prior to treatment.


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> Your claim was that the father had a valid reason since he had HIV so he was concerned about transmitting the disease to his daughters. My point was that his concern was invalid since fathers can't transit HIV to their children through the pregnancy process, only the mothers can transmit HIV to their children.


He wouldn't have been able to have kids without also infecting his wife. To knowingly infect someone with something like HIV I believe is a capital offense in China. It's also a pretty serious crime in the US and Europe as well.



> Unintended consequences and ethical concerns need to be discussed, relative to CRISPR treatments, considering the sheer amount that we don't know about our genes. That gene editing can affect not only the patient but future generations, is also relevant since if people want to maim, harm or kill themselves, that's fine if it happens in a vacuum. But...with CRISPR treatments, it doesn't happen in a vacuum unless patients are willing to be sterilized prior to treatment.


Well luckily this thread was originally about a success story on how CRISPR helped a blind woman restore some of her vision then and not whatever Black Mirror bs you keep coming up with. 😉


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## mia-me (Feb 5, 2021)

Scoobyscoob said:


> He wouldn't have been able to have kids without also infecting his wife. To knowingly infect someone with something like HIV I believe is a capital offense in China. It's also a pretty serious crime in the US and Europe as well.


That's not true, considering how his daughters were inseminated in a petri dish and subsequently transplanted into his wife. Also, it's interesting how he avoided an experimental CRISPR treatment that had the potential to cure him of HIV. Why was it okay to shorten his daughters' lives but not his?



> Well luckily this thread was originally about a success story on how CRISPR helped a blind woman restore some of her vision then and not whatever Black Mirror bs you keep coming up with.


Are you being deliberately obtuse?


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## Scoobyscoob (Sep 4, 2016)

mia-me said:


> Are you being deliberately obtuse?


Is this projection? You seriously can't be so dumb as to misconstrue just to keep beating a dead horse. Please stop replying in this thread. You are so off topic that I simply won't respond to any more of your replies. 😄


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## Electra (Oct 24, 2014)

Researcher He Jiankui used the gene editing technology CRISPR to change the DNA of two embryos that were allowed to develop into children. New research now shows that the altered gene may have given the two girls a higher risk of premature death. (Photo: AP Photo / Mark Schiefelbein / Scanpix)
*May have given Chinese CRISPR twins risk of premature death*
When the scandal researcher changed the genes to protect the girls from HIV, he may at the same time have given them a higher risk of dying from other things.

Ingrid Spilde
JOURNALIST
Wednesday 05 June 2019 - 04:30

Shock waves swept through the world of research in November 2018.

Then it became known that the Chinese researcher He Jiankui had used the gene editing tool CRISPR to change the DNA of human embryos. Now the two girls were born. They had received a genetic change that would give them protection against HIV.

This was the first time that the revolutionary CRISPR technology was used on human embryos that were allowed to develop and be born. But the experiment was performed without ethical approval and the results were presented on Youtube, not in any scientific journal.

Shock and disbelief
- No genes other than those to prevent HIV infection were altered. The girls are as safe and healthy as other babies, He assured in one of the videos.

But researchers around the world reacted with disbelief and condemnation.

Editing human genes so that the new genes are passed on to the next generation is a huge step into the unknown. And the technology is so new that He could not possibly have an overview of what consequences the changes could have for the girls.

This week came the results of the first study which just suggests that Hes stunt can have negative consequences.

Greater risk of dying early
Researchers Xinzhu Wei and Rasmus Nielsen have examined data on people who have natural changes in the particular gene. This causes certain changes in white blood cells, which in turn provides protection against HIV.


This is exactly what He wanted to recreate in the two girls using genre editing.

But what else does the mutation in this gene do?

According to the new study, these are not just nice things. The results showed that people who had received the HIV-resistant variant also had a 21 percent higher risk of dying early, compared with people without this gene variant.

Greater vulnerability to other diseases
Researchers do not yet know for sure what causes this, but other studies have suggested that the mutation may increase the risk of dying from the flu.

This emphasizes that the introduction of mutations in humans entails significant risk, even when the mutation has a presumed advantage, Wei and Nielsen write and continue:

- In this case, the price of resistance to HIV may be vulnerability to other, and perhaps more common, diseases.

It is important to analyze the consequences first
Several researchers the British newspaper The Guardian has spoken to believe that the new study is a reminder that apparently beneficial changes in genes can also have negative consequences.

- If we start to make obviously beneficial changes, we really know what will happen later in life, asks geneticist Adrian Hill at Oxford University, who has not participated in the new study.

Both he and others emphasize to The Guardian how important it is to make proper analyzes of the possible consequences, before we possibly decide to change human genes.

Reference:

Xinzhu Wei & Rasmus Nielsen, CCR5-∆32 is deleterious in the homozygous state in humans, Nature Medicine, June 2019. Abstract.


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## Electra (Oct 24, 2014)

*Chinese researcher He Jiankui is receiving harsh criticism from around the world after this video was published on Sunday 25 November. In it, he says that the world's first genetically modified babies were born a few weeks ago.*

Claims that the first genetically modified humans were born in China
The research group receives harsh criticism from researchers around the world. The university where the genetic researcher works refuses to have anything to do with the experiment and Chinese authorities say they will investigate the experiment.

Eivind Nicolai Lauritsen
JOURNALIST
Wednesday 28 November 2018 - 04:31

The world heard about the genre-edited twin girls Lulu and Nana on Sunday 25 November. The reactions have not been long in coming.

"This is an unscrupulous experiment on people who are not morally or ethically defensible," Kiran Musunuru, a geneticist and associate professor of medicine at the University of Pennsylvania, told the Associated Press.

The genetic material of the twins must have been edited before they were born. The goal is to make them resistant to the HIV virus. And it should have worked, according to researcher He Jiankui.

If this is true, these are the first people we know of who were born after having their genetic material changed. The technology that has been used is called CRISPR, and makes it possible to cut genes from our genetic material to replace them with others.

Seven Chinese parent couples are said to have received assistance with assisted reproduction. Following this, the embryos were genetically modified using CRISPR technology.

The researchers removed a gene that makes it possible for HIV to infect children. Only one of these seven couples became pregnant after the assisted conception, according to the researchers. It is this couple who have become parents to the twins Lulu and Nana.


The results of the experiment have not been published in a scientific journal, but He has posted five videos on YouTube. These tell what his research group has done and why they have done it.

- No genes other than those to prevent HIV infection were altered. The girls are just as safe and healthy as other babies, He says in one of the videos.

Professor He Jiankui at the Southern University of Science and Technology in Shenzhen, China, also runs two biotechnology companies.

Gets harsh criticism from the research community
The research community does not seem satisfied with the documentation or justification for the study.

"The lack of transparency and risk-taking is deeply worrying," Jennifer Doudna, a professor at UC Berkely in California, told The Washington Post.

Jennifer Doudna is critical of the way technology has been used.

- There are safe and effective ways to protect children from HIV infection, so the study also does not seem to meet a medical need, says Doudna.

Other researchers are not as polite in their criticism of the research group
- Here you have a scientist who changes the human race, and then you have a YouTube video that tells about it without publication in a scientific journal. It's almost surreal, says Eric Topol, founder of the Scripps International Research Translational Institute, to the same newspaper.

The videos come a few days before a large, international conference on genre editing, where He Jiankui will speak. Some accuse the Chinese researcher of trying to coup the conference with the dramatic revelation.


Chinese researchers: - Madness
Topol reacts strongly to the researchers 'conclusion that there are no unforeseen changes in the twins' DNA. Topol believes that it is impossible to say how it will go when these twins themselves have children.

- They have used this powerful tool in a careless way without a good reason, says Topol.

China has long been a world leader in genre editing research. But He Jiankui also receives strong criticism in his home country

"We can only use the word madness to describe this experiment performed on humans," wrote more than 120 Chinese researchers in an open letter posted on the social media service Weibo, China's response to Facebook. The letter has been translated by the online newspaper Quartz.

The Chinese researchers believe that He Jiankui has exposed the children to a great risk of unintended changes in the genetic material, at the same time as he has damaged the reputation and development of biomedical research in China.

- Pandora's box has been opened. We have to close it before we lose our last chance. We, as biomedical researchers, condemn all attempts to edit the genes of human embryos without a focus on ethics and safety, write the Chinese
scientists.

Has kept the research hidden

Some of the researchers fear that he has gone too fast and thus damaged the entire research field, says Sigrid Bratlie, senior adviser in the Biotechnology Council. (Photo: Biotechnology Council)
Some of the researchers fear that he has gone too fast and thus damaged the entire field of research, says Sigrid Bratlie, senior adviser in the Biotechnology Council. (Photo: Biotechnology Council)
There are many reasons why researchers react so strongly, says Sigrid Bratlie, senior adviser in the Biotechnology Council, to forskning.no.

One of the reasons is that the experiment took place without anyone else knowing about it.


- He has operated in secret with zero transparency around the project, Bratlie explains.

Even the university where He Jiankui works says they have had no knowledge of the experiment. The hospital that employs the doctors who participated in the trial says the same thing. They also deny that the children were born on their premises.

Many have expected CRISPR to be used for another disease
The Chinese researcher is also criticized for trying to make children resistant to HIV through gene editing.

The gene change was only successful in one of the two embryos. He still chose to put both back into the mother, even if it means that one of the twins has to live with all the risk associated with having his genetic material changed, without any of the benefits.

In addition, the twins had a low risk of being born with HIV, even though their fathers were infected. There are already safe and proven medicines that prevent the HIV virus from spreading from parents to children.

"Many people have thought that when CRISPR technology was first used in this way, it would be about someone not having to be born with a serious hereditary disease, such as Huntington's or Duchenne," says Bratlie.

Bratlie believes the researchers have nevertheless chosen to make the HIV change because it has previously been done on adult patients using a different genetic technology.

- The threshold was quite low, says Bratlie.

Only three years since the technology was first tested on embryos
She still believes that many of the strong reactions can be explained by how unexpected it all is, and how fast the genre editing technology moves.

- Some of the researchers fear that he has gone too fast and thus damaged the entire research field, says Bratlie.

It is only three years since Chinese researchers tested CRISPR technology on human embryos for the first time. The researchers encountered major problems, only a few of the embryos survived long enough to be researched and the experiments were met with harsh criticism. The lead researcher behind the first experiments also took self-criticism in an interview with Nature News the same year.

Therefore, many thought the same thing would happen when American researchers published their study on gene editing of human embryos last summer. It did not happen. They received broad support from both European and American scientific organizations.

- What we see in China now is the next step in this development, Bratlie believes.

She believes it is important that we have a good public dialogue about genre editing, even though current legislation means that the technology can not be used for either research on embryos or to create genre-edited children in Norway.

Chinese authorities will investigate
He Jiankui has not only received criticism from research colleagues. The Southern University of Science and Technology, where He works, has also gone to great lengths to abdicate responsibility for the experiment.

- The research was done off campus and was not reported to the university, they write in a press release on their own website.

The hospital mentioned in the video also disclaims all responsibility.

"We can assure you that the research was not done in our hospital, and the babies were not born here," a representative of Shenzhen Harmonicare Women's and Children's Hospital told CNN.

At the same time, they confirm that two of the doctors mentioned in He's report work at the hospital. The hospital says they have launched an internal investigation to find out what happened.

Chinese authorities also say they will investigate what has happened and how the research has been done.


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## Scoobyscoob (Sep 4, 2016)

Electra said:


> View attachment 887844
> 
> Researcher He Jiankui used the gene editing technology CRISPR to change the DNA of two embryos that were allowed to develop into children. New research now shows that the altered gene may have given the two girls a higher risk of premature death. (Photo: AP Photo / Mark Schiefelbein / Scanpix)
> *May have given Chinese CRISPR twins risk of premature death*
> ...





Electra said:


> *Chinese researcher He Jiankui is receiving harsh criticism from around the world after this video was published on Sunday 25 November. In it, he says that the world's first genetically modified babies were born a few weeks ago.*
> 
> Claims that the first genetically modified humans were born in China
> The research group receives harsh criticism from researchers around the world. The university where the genetic researcher works refuses to have anything to do with the experiment and Chinese authorities say they will investigate the experiment.
> ...


This amounts to the scientific equivalent of a publicity stunt. The major difference here is that this stunt involves two lives, which is unfortunate. I hope he's barred from research on CRISPR or at least admonished then restricted for a few years on any research involving CRISPR.


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