from the world's big
A punishment is handed down for performing shocking research on human embryos.
- In November 2018, a Chinese scientist claimed he'd flouted ethics and the law to edit genes in human embryos.
- Other Chinese scientists call He Jiankui's research "crazy."
- Three gene-modified babies are now living in China, future uncertain.
He's experiments<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMjI2NTE1Ny9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYyNjE0MDI2Mn0.pD6za00yORg0ZH6nk0RJLh3SBOzed7uc1oh9yZDe3tc/img.jpg?width=980" id="98186" class="rm-shortcode" data-rm-shortcode-id="5a306efb5afbd1a936315f28134a8417" data-rm-shortcode-name="rebelmouse-image" />
He tells the world
Image source: Anthony Wallace/Getty<p>When He first announced his research in November 2018 at the Second International Summit on Human Genome Editing in Hong Kong, the scientific community was stunned at this deliberate flaunting of scientific consensus and Chinese law. A <a href="https://www.yicai.com/news/100067069.html" target="_blank">statement</a> from 122 Chinese scientists referred to He's work as "crazy" and called it "a huge blow to the global reputation and development of Chinese science."</p><p>He, an associate professor at Southern University of Science and Technology in Shenzhen, China, claimed to have used CRISPR-cas9 in an attempt to provide embryos with immunity to HIV. The DNA in 16 embryos was altered, and 11 of these were used in six implant attempts that eventually led to the successful pregnancy of three infants. </p><p>After the announcement, Julian Savulescu of University of Oxford told <a href="https://www.theguardian.com/science/2018/nov/26/worlds-first-gene-edited-babies-created-in-china-claims-scientist" target="_blank"><em>The Guardian</em></a>, "If true, this experiment is monstrous," adding that, "There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it. This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit." While there <em>are</em> <a href="https://www.avert.org/professionals/hiv-around-world/asia-pacific/china" target="_blank">HIV infections in China</a>, there was no indication that the embryos had been infected.</p><p>In his announcement, He claimed to have inserted a mutated form of the CCR5 gene into the embryos' genome, a particular mutation that makes a small number of people immune to HIV. <a href="https://www.theguardian.com/science/2018/nov/26/worlds-first-gene-edited-babies-created-in-china-claims-scientist" target="_blank">According to</a> Kiran Musunuru of University of Pennsylvania, though, the mutation has a nasty downside: People who have it are at higher risk of contracting other, non-HIV viruses, and of dying of the flu. So, while potentially shielding his subjects from HIV, He was, in essence, consigning them to a lifetime of enhanced vulnerability to all sorts of more common infections.</p><p>It's likely, however, that He never actually produced or inserted the CCR5 mutation in any event. Excerpts of He's documentation published in <a href="https://www.technologyreview.com/s/614764/chinas-crispr-babies-read-exclusive-excerpts-he-jiankui-paper/" target="_blank"><em>MIT Technology Review</em></a> suggest that what He created were some new kinds of CCR5 mutations, as well as unintended gene mutations elsewhere in the genome, and the effect of all of these edits are anyone's guess. After reviewing the excerpts, University of California, Berkeley's Fyodor Urnov <a href="https://www.theguardian.com/science/2018/nov/26/worlds-first-gene-edited-babies-created-in-china-claims-scientist" target="_blank">concluded</a> He's claim was "a deliberate falsehood."</p>
What the court said<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMjI2NTU5NS9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTY0MzkyOTExM30.W-iOUnHs0lXu59_5Wqq6ACnLouuscxg4dr-ySfS1pjg/img.jpg?width=980" id="03f5e" class="rm-shortcode" data-rm-shortcode-id="0ce199d4f8ebb8abea1a6b9b2341146e" data-rm-shortcode-name="rebelmouse-image" />
He Jiankui and his genetic research team
Image source: VCG/Getty<p>Two of He's colleagues involved in the research were also convicted by the Shenzhen court. According to Chinese news outlet <em>Xinhua</em>, the court found:</p><p style="margin-left: 20px;"><em>"The three accused did not have the proper certification to practice medicine, and in seeking fame and wealth, deliberately violated national regulations in scientific research and medical treatment. They've crossed the bottom line of ethics in scientific research and medical ethics."</em></p><p>The court also ruled that He had forged documents from an ethics review panel.</p><p>The other two researchers found guilty were Zhang Renli, who was sentenced to two years in prison and fined one million yuan (about $143,000), and Qin Jinzhou, whose 18-month sentence came with a two-year reprieve, and a 500,000 yuan ($71,000) fine.</p>
Facebook's misinformation isn't just a threat to democracy. It's endangering lives.
- Facebook and Instagram users have been inundated with misleading ads about medication that prevents the transmission of HIV (PrEP), such as Truvada.
- Over the years, Facebook's hands-off ad policy has faced scrutiny when it comes to false or ambiguous information in its political ads.
- Unregulated "surveillance capitalism" commodifies people's personal information and makes them vulnerable to sometimes misleading ads.
LGBT groups are saying that Facebook is endangering lives by advertising misleading medical information pertaining to HIV patients.
The tech giant's laissez-faire ad policy has already been accused of threatening democracy by providing a platform for false political ads, and now policy could be fostering a major public-health concern.
LGBT groups take on Facebook’s ad policy
According to LGBT advocates, for the past six months Facebook and Instagram users have been inundated with misleading ads about medication that prevents the transmission of HIV (PrEP), such as Truvada. The ads, which The Washington Post reports appear to have been purchased by personal-injury lawyers, claim that these medications threaten patients with serious side effects. According to LGBT organizations led by GLAAD, the ads have left some patients who are potentially at risk of contracting HIV scared to take preventative drugs, even though health officials and federal regulators say the drugs are safe.
LGBT groups like GLAAD, which regularly advises Facebook on LGBT issues, reached out to the company to have the ads taken down, saying they are false. Yet, the tech titan has refused to remove the content claiming that the ads fall within the parameters of its policy. Facebook spokeswoman Devon Kearns told The Post that the ads had not been rated false by independent fact-checkers, which include the Associated Press. But others are saying that Facebook's controversial approach to ads is creating a public-health crisis.
In an open letter to Facebook sent on Monday, GLAAD joined over 50 well-known LGBTQ groups including the Human Rights Campaign, the American Academy of HIV Medicine and the National Coalition for LGBT Health to publicly condemn the company for putting "real people's lives in imminent danger" by "convincing at-risk individuals to avoid PrEP, invariably leading to avoidable HIV infections."
What Facebook’s policy risks
Of course, this is not the first time Facebook's policy has faced scrutiny when it comes to false or ambiguous information in its ads. Social media has been both a catalyst and conduit for the rapid-fire spread of misinformation to the world wide web. As lawmakers struggle to enforce order to cyberspace and its creations, Facebook has become a symbol of the threat the internet poses to our institutions and to public safety. For example, the company has refused to take down 2020 election ads, largely funded by the Trump campaign, that spew false information. For this reason, Facebook and other social media platforms present a serious risk to a fundamental necessity of American democracy, public access to truth.
But this latest scandal underlines how the misconstrued information that plagues the web can infect other, more intimate aspects of American lives. Facebook's handling of paid-for claims about the potential health risks of taking Truvada and other HIV medications threatens lives.
"Almost immediately we started hearing reports from front-line PrEP prescribers, clinics and public health officials around the country, saying we're beginning to hear from potential clients that they're scared of trying Truvada because they're seeing all these ads on their Facebook and Instagram feeds," said Peter Staley, a long-time AIDS activist who works with the PrEP4All Collaboration, to The Post.
Unregulated Surveillance Capitalism
To be fair, the distinction between true and false information can be muddy territory. Personal injury lawyers who represent HIV patients claim that the numbers show that the potential risks of medications such as Turvada and others that contain the ingredient antiretroviral tenofovir may exist. This is particularly of note when the medication is used as a treatment for those that already have HIV rather than prevention for those that do not. But the life-saving potential of the HIV medications are unequivocally real. The problem, as some LGBT advocates are claiming, is that the ads lacked vital nuance.
It also should be pointed out that Facebook has taken action against anti-vaccine content and other ads that pose threats to users. Still, the company's dubious policies clearly pose a big problem, and it has shown no signs of adjusting. But perhaps the underlying issue is the failure to regulate what social psychologist Shoshana Zuboff calls "surveillance capitalism" by which people's experiences, personal information, and characteristics become commodities. In this case, paid-for personal-injury legal ads that target users with certain, undisclosed characteristics. It's been said that you should be wary of what you get for free, because it means you've become the product. Facebook, after all, is a business with an end goal to maximize profits.
But why does a company have this kind of power over our lives? Americans and their legislators are ensnared in an existential predicament. Figure out how to regulate Facebook and be accused with endangering free speech, or leave the cyber business alone and risk the public's health going up for sale along with its government.
Chinese scientist He Jiankui edited the genes of two babies to be resistant to HIV, provoking outrage. Now, a new genetic analysis shows why this was reckless.
- The gene-editing technique CRISPR offers major benefits to humanity, but scientists don't believe the field is mature enough for widespread editing.
- For this reason, when Chinese scientist He Jiankui edited the genes of two babies to be resistant to HIV, his work provoked outrage.
- A new study of 400,000 genetic profiles reveals that He's genetic editing did indeed have an unintended consequence.
Playing with fire<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8xOTU3Njg0OS9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYyMTQ1MTQ4MX0.i5HIJZvOx_wZwE2rDUNgouxu85Bw7m85xHKn26rvj7I/img.jpg?width=980" id="bbf16" class="rm-shortcode" data-rm-shortcode-id="d9860c45af2f72effc166a24fb970a8d" data-rm-shortcode-name="rebelmouse-image" />
He Jiankui during a panel discussion after presenting his results at the Second International Summit on Human Genome Editing in Hong Kong.
ANTHONY WALLACE/AFP/Getty Images<p>He selected Lulu and Nana for gene editing because their father had HIV. It's far more common for HIV to pass from the mother to the offspring, but it is possible, albeit rare, for HIV to pass from the <a href="https://www.livescience.com/63710-father-transmits-hiv-to-son-rare-case.html" target="_blank">father to the offspring</a>. Providing Lulu and Nana each with two copies of <em>delta-32 </em>mutation did likely protect them against this possibility as well as from catching HIV later in life.</p><p>However, some evidence exists that individuals with two copies of <em>delta-32</em> catch influenza, West Nile, and certain other diseases more easily. While HIV is a grievous disease, these far more commonly encountered diseases can often be just as deadly, especially in one's older age. This is precisely the result that the researchers uncovered in their analysis. Individuals with two copies of <em>delta-32</em> were 20% more likely to die before the age of 76, with the highest probability of death occurring at 74.</p><p>What's more, because Lulu and Nana had their genes edited while they were embryos, this mutation will be passed down to any offspring that they have later. Given this scope, its increasingly clear why scientists reacted with such horror at He's actions: Gene-editing an embryo could have long-lasting, unintended consequences that could seriously impair what would have been otherwise healthy individuals for generations.</p><p>Another potential unknown impact that <em>delta-32</em> could have is related to the girls' ethnicities. The mutation is far more common in individuals from northern Europe, while its very rare for individuals from Asia and Africa. Some researchers argue that the presence of <em>delta-32</em> in Europeans is due to the impact of <a href="https://www.sciencedaily.com/releases/2005/03/050325234239.htm" target="_blank">plagues</a> from the Middle Ages, such as the Black Death. The absence of this mutation in other parts of the world is likely because it simply isn't useful there—different environments have different diseases, against which <em>delta-32</em> could be <a href="https://www.theatlantic.com/science/archive/2019/06/what-we-still-dont-know-about-the-gene-edited-in-the-crispr-babies/590815/" target="_blank">more deleterious</a> than beneficial. </p><p>He's actions and studies such as this one underscore the importance of a smart, evidence-based regulatory framework for gene-editing technologies. One question we need to resolve is whether <a href="https://www.americanscientist.org/article/the-gene-editing-conversation" target="_blank">germline editing</a>, such as that performed on Lulu and Nana, should be permitted since these changes can be passed down to subsequent offspring. We also need a way to gauge the impact of editing specific genes so that we're not surprised by unintended side effects, like the diminished lifespan caused by <em>delta-32</em>. All in all, this study and He's work show us that there are simply too many moving parts to just introduce genetic mutations and see how things go. We need to be more rigorous than that. </p>
Recently, "the London patient" became the second person in history to be cured of HIV. Now, "the Düsseldorf patient" appears to be the third, with the possibility of more on the way.
- Timothy Brown became the first person to be cured of HIV in 2007.
- Recently, it's been reported that a patient known as "the London patient" has also lost any trace of the HIV virus in their system.
- Now, a third patient appears to be in HIV remission known as "the Düsseldorf patient."
Finding the right cure<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8xOTI1NTI4NS9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTU5Mzk4NTY0MX0.jkG8XOI7TNeu51SG9X4kLraQsmTQi-1EZ9R8lgJfxbs/img.jpg?width=980" id="ad25d" class="rm-shortcode" data-rm-shortcode-id="c884afd6b804dff796e3efece1f85e9e" data-rm-shortcode-name="rebelmouse-image" />
A scanning electron microscope image of HIV. The virus, colored in green, can be seen budding from the surface of a lymphocyte. Image source: Centers for Disease Control and Prevention<p>Part of the challenge of recreating Brown's success was identifying which factor of his treatment cured his HIV. The successful treatment of the London and Düsseldorf patients seem to suggest that the key lies in a genetic mutation called <em>CCR5delta32</em>.</p><p>Brown, the London patient, and the Düsseldorf patient all had some form of blood cancer — which, as mentioned earlier, are particularly common in people with HIV. All of them had bone marrow transplants in order to treat their cancers, and all of their transplants came from donors with a mutated <em>CCR5</em> gene. </p><p>This gene produces the CCR5 protein, which is dispersed on the surface of white blood cells. HIV latches onto this protein and uses it to infect white blood cells, and if the virus manages to do so enough times, it causes AIDS. But the <em>CCR5delta32</em> mutation renders this protein nonfunctional, essentially deleting HIV's entry into white blood cells. </p><p>After receiving this rare bone marrow transplant, the London patient stayed on their HIV medication for nearly a year and a half before they were declared — for all intents and purposes — cured of HIV. The Düsseldorf patient stayed on their medication for only three-and-a-half months. In both patients, all that remains of the HIV viruses are broken bits of DNA that can no longer replicate.</p><p>Both patients were registered with IciStem, an international collaboration investigating how to cure HIV through stem cell transplants. IciStem has identified more than 22,000 donors with the rare <em>CCR5delta32</em> mutation, which is most commonly found in caucasians (about 1 percent of them). It's possible that more good news on this treatment is on the way as well: 36 other patients registered with IciStem have received these transplants, though its too early to definitively say whether they've been cured or not.</p>
Good news and bad<p>It's important to remember, however, that this treatment is still in its early stages. "To be clear, this is not an option yet for people with HIV, even in very rich countries, but it is a major step forward," says <a href="https://www.eurekalert.org/pub_releases/2019-03/uotw-asc030519.php" target="_blank">Professor Francois Venter</a> of the Wits Reproductive Health and HIV Institute. "This is incredibly exciting, as it furthers our understanding of the complex immunology of HIV and should get us closer to a cure."</p><p>Part of the problem is that bone marrow transplants are extremely risky, which is why they're reserved for individuals with life-threatening blood cancers. Transplants like these are at high risk for causing <a href="https://www.lls.org/treatment/types-of-treatment/stem-cell-transplantation/graft-versus-host-disease" target="_blank">graft-versus-host disease</a>. Because the job of white blood cells is to attack foreign cells, like those from a virus, donated white blood cells from a bone marrow transplant can begin attacking the host's body. This is part of the reason why Brown came so close to death after his initial treatment.</p><p>Furthermore, another strain of HIV can enter cells without the CCR5 protein. This strain, called X4, uses the CXCR4 protein instead. Patients can harbor both strains of HIV, which occurred in at least <a href="https://www.nejm.org/doi/full/10.1056/NEJMc1405805" target="_blank">one patient</a> who received a <em>CCR5delta32 </em>transplant. While the normal strain of HIV subsided in this patient, the X4 strain moved to take its place.</p><p>In the admittedly small number of successful cases so far, the treatment has eradicated the normal strain of HIV. The X4 strain, if present, can be kept at bay with regular HIV medication, such as the daily pill Brown takes as a precaution against the alternative strain. </p><p>Moreover, rather than use a treatment as aggressive as a bone marrow transplant, it may soon be possible to use gene therapy techniques to add the rare mutation directly to HIV patients' genetic code. Along this vein, the Chinese scientist He Jiankui used CRISPR to modify the CCR5 protein in two children to make them resistant to HIV. It's extremely difficult to anticipate the ramifications of genetic modification like this, and Jiankui's lack of caution drew international criticism from the scientific community. </p><p>However, with more research, an approach like Jiankui's may be the way forward for curing HIV.</p>
The promising news comes 12 years after the "Berlin patient" became the world's first person to be cured of the deadly virus.
- The New York Times reports that a team of scientists plan to announce tomorrow that a patient in London has been effectively cured of HIV.
- The cure reportedly was the result of a bone-marrow transplant that came with a genetic mutation that naturally blocks HIV from spreading throughout the body.
- This approach isn't quite practical to implement on a large scale, but the knowledge gained from it will likely help scientists develop more scalable approaches.