Top Bioethics News Stories: December 2019 - November 2020

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“Chinese Scientist Who Edited Babies’ Genes Jailed for Three Years”

by Ian Sample, The Guardian, December 30, 2019

A Chinese court has sentenced He Jiankui, the scientist who sparked global controversy last year when he claimed to have created the world’s first “gene-edited” children, to three years in prison for violating medical regulations. He shocked the scientific community when he announced at a conference in Hong Kong that he had created genetically modified twin sisters, dubbed Lulu and Nana, and that a third child was on the way. (https://tinyurl.com/35bbkmes)

In November 2018, He Jiankui, associate professor at Southern University of Science and Technology in Shenzhen, announced at a conference in Hong Kong the birth of twin girls who were genetically modified as embryos using CRISPR-Cas9. This was met with global criticism. One of the problems with CRISPR is the potential for off-target edits to the genome. In December 2019, He was found guilty of violating research regulations and conducting “illegal medical practice.” He is banned from working in human reproductive technologies. Before He Jiankui received his sentence from a Shenzhen court, MIT Technology Review published excerpts from the unpublished original paper, which showed He Jiankui’s team did not reproduce the CCR5 variant that would ostensibly give the twins immunity to HIV, but instead made a new type of genetic mutation with unknown consequences.[1]

“‘Against All Odds’: The Inside Story of How Scientists Across Three Continents Produced an Ebola Vaccine”

by Helen Branswell, STAT News, January 7, 2020

The reality was that, for years, scientists who studied Ebola, which belongs to a family of viruses called filoviruses, had poured their hearts into work to develop vaccines and drugs to combat these deadly scourges. And for years, they had seen promising work smash up against unscalable walls. There was no potential for drug makers to recoup development costs and, with outbreaks only sporadic, there was little opportunity to subject experimental vaccines to rigorous tests. (https://tinyurl.com/36hwsuk9)

The Ebola outbreak in the Democratic Republic of Congo continued into the spring of 2020 with containment and medical care sometimes thwarted by political in-fighting and unrest. Authorities thought the outbreak had abated by April 2020, only to find several more cases pop up. In December 2019, the U.S. Food & Drug Administration approved Ervebo, the first vaccine to prevent Ebola virus disease. The vaccine was developed by Merk. Notably, Johnson & Johnson also has an Ebola vaccine that is currently being used in a new Ebola outbreak. The Merk vaccine uses a vesicular stomatitis viral vector while Johnson & Johnson vaccine uses the same adenovirus vector that is used in its COVID-19 vaccine.

“The World’s Scariest Facial Recognition Software, Explained”

by Rebecca Heilweil, Vox, May 8, 2020

Law enforcement has been using facial recognition for a while. But Clearview’s technology represents a scary step further than anything we’ve seen before, according to reporting from the New York Times. The secretive company says it’s created a database of over 3 billion images that have been scraped from all corners of the internet, including social networks like Facebook, Instagram, and YouTube. From just a snapshot or video still, Clearview claims its app lets a police officer identify a face and match it with publicly available information about the person, within just a few seconds. (https://tinyurl.com/nmya9rsu)

Facial recognition technology is going to continue to be an issue as societies decide whether security is worth compromising certain freedoms. China has rolled out facial recognition technology to an alarming degree with the aim of eventually having eyes on every part of the country. In the U.S. Clearview AI has developed facial recognition tech that matches faces in videos with its extensive database of pictures from social media and other personal online data. Law enforcement can use it to match a photo with a person’s online profile. Clearview has also allowed private users to purchase the use of its database. Critics of facial recognition technology say it is an invasion of privacy and the algorithms can be biased and inaccurate, particularly when identifying people of color. STAT News reported in May 2020 several states have considered using facial recognition technology for contact tracing.[2]

“Dutch Court Allows Euthanasia in Advanced Dementia Cases”

by Mick Krever and Amy Woodyatt, CNN, April 22, 2020

Doctors in the Netherlands may legally euthanize patients with severe dementia who previously provided a written request for the procedure, the country’s highest court ruled Tuesday. In the landmark decision, the court said that a physician may respond to a written request for euthanasia made before someone develops advanced dementia, provided certain legal requirements are met—even if the patient’s condition means they become unable to confirm that request. (https://tinyurl.com/4n8jkjh5)

The Netherlands and Belgium reported an increase in requests for euthanasia in 2019 compared to 2018, with the Netherlands reporting a 22% increase in requests compared to the previous year, and Belgium reporting a 12% increase. In April the Dutch Supreme Court approved doctors performing euthanasia for patients with advanced dementia if the patient had requested euthanasia prior to developing advanced disease. Critics have worried about the slippery slope of allowing euthanasia.

“Ethics Questions Swirl Around Historic Parkinson’s Experiment”

by Sharon Begley,[3] STAT News, May 14, 2020

A secretive experiment revealed this week, in which neurosurgeons transplanted brain cells into a patient with Parkinson’s disease, made medical history. It was the first time such “reprogrammed” cells, produced from stem cells that had been created in the lab from the man’s own skin cells, had been used to try to treat the degenerative brain disease. But it was also a bioethics iceberg, with some issues in plain sight and many more lurking. (https://tinyurl.com/5afkye6c)

The experiment was approved by the FDA for compassionate use. However, bioethicists question whether the patient, former physician and businessman George Lopez, could really give informed consent to the procedure since he had funded the research. Lopez worked with Kwang-Soo Kim, who thought the best cells for replacing Parkinson’s patient’s faulty brain cells were iPSCs derived from the patient’s skin. After two surgeries, Lopez improved, although he is not cured from Parkinson’s disease. There is some question as to whether the improvement is due to the iPSC transplant, the interaction with the brain tissue during surgery, or the placebo effect (which is common in Parkinson’s patients). Additionally, bioethicists question whether this is a case of bending science to satisfy a wealthy donor. Researchers said it would have been better if Kim had published or presented his experiment before 2020, almost 2 years after the first surgery.

“Balls of Cells Mimic an Unseen Stage of Human Embryo Development”

by Kelly Servick, Science, June 11, 2020

After a human sperm and egg unite, a new embryo spends its first few weeks looking blobby. There’s no obvious top or bottom, and it is unclear which cells will give rise to which body parts. After about 14 days, the embryo elongates and forms layers, revealing a rough plan for the body. But this dramatic transformation, called gastrulation, has never been directly observed in human embryos: Growing them to this stage in a lab is technically difficult and ethically fraught. Now, researchers have made structures from human stem cells that mimic some features of embryos after gastrulation, an advance that could reveal how genetic mutations and chemical exposures can lead to miscarriages and birth defects. (https://tinyurl.com/2m85a2mw)

Researchers seeking to circumvent the 14-day rule used a line of embryonic stem cells that self-assembled after three days to form something that looked and behaved like an 18–21 day old human embryo, although these embryo-like entities were missing some key features of human embryos. These entities are made from embryonic stem cells, which require the destruction of an embryo.

“Crisis Hits Lebanon’s Hospitals, Among the Best in Mideast”

by Sarah El Deeb, Associated Press, July 22, 2020

Lebanon’s hospitals, long considered among the best in the Middle East, are cracking under the country’s financial crisis, struggling to pay staff, keep equipment running or even stay open amid a surge in coronavirus cases. Private hospitals, the engine of the health system, warn they may have to shut down. Chronically underfunded public hospitals, which have led the fight against the virus, fear they will be overrun. (https://tinyurl.com/2sxa2sea)

Prior to the pandemic, Lebanon was already descending into a state of economic catastrophe. By July, Lebanon’s hospitals could barely afford supplies, as they had to pour resources into keeping generators on amidst nationwide blackouts. Because the government owed hospitals millions of dollars, patients had to be triaged based on whether they could pay out-of-pocket. By August, several major hospitals had shut down. Then an explosion at a port in Beirut [https://tinyurl.com/5c6k2pcu] exacerbated the humanitarian crisis.

“Built to Last, Part 1: China Secretly Built a Vast Infrastructure to Imprison Muslims”

by Megha Rajagopalan, Alison Killing, and Christo Buschek, BuzzFeed, August 28, 2020

In the most extensive investigation of China’s internment camp system ever done using publicly available satellite images, coupled with dozens of interviews with former detainees, BuzzFeed News identified more than 260 structures built since 2017 and bearing the hallmarks of fortified detention compounds. There is at least one in nearly every county in the far-west region of Xinjiang. (https://tinyurl.com/489aweut)

Rajagopalan, Killing, and Buschek published a multi-part series showing the abuses by the Chinese authorities in China’s far west province, Xinjiang, placing Uyghurs and other Muslim minorities in internment camps where they were forced to work, abused, and sometimes killed. Using satellite technology and expertise from architects and others, the journalists demonstrated that the Chinese government is engaging in the biggest internment of an ethnic people since Germany during World War II. Their work was referenced in the Newline’s Genocide Report and in the U.S. Department of State’s International Religious Freedom Report. Rajagopalan, Killing, and Buschek won the 2021 Pulitzer Prize for their work. Earlier in 2020, a UN report showed the drastic decline in births of Uyghur people in Xinjiang due to forced sterilization and abortions [“China Cuts Uighur Births with IUD, Abortion, Sterilization,” Associated Press, June 30, 2020, https://tinyurl.com/7y6unw8u]

“Expert Panel Lays Out Guidelines for Germline Editing, While Warning Against Pursuit of ‘CRISPR Babies’”

by Andrew Joseph, STAT News, September 3, 2020

Nearly two years after the birth of the first “CRISPR babies” stunned the world, an international group of experts on Thursday warned such human experimentation—in which the DNA of embryos is edited before starting pregnancies—should not be conducted because of unresolved scientific and ethical issues. But the group’s eagerly awaited report detailed the steps that scientists should go through before attempting to create gene-edited babies should countries ever greenlight the procedure. (https://tinyurl.com/6t7ejd39)

A commission comprised of the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the UK’s Royal Society, which formed after revelations that He Jiankui genetically edited embryos that were brought to term, determined the stringent standards of proof needed to demonstrate that “precise genomic changes can be made reliably and without introducing undesired changes” according to the document overview. [“Heritable Human Genome Editing,” The National Academies Press, 2020, https://tinyurl.com/477kf24a]. Studies published in October 2020 on CRISPR-Cas9 reveal that scientists are not even close to precisely editing embryos [Marilynn Marchione, “Lab Tests Show Risks of Using CRISPR Gene Editing on Embryos,” AP News, October 29, 2020, https://tinyurl.com/475ps4ku]

“Big Tech Companies Back Away from Selling Facial Recognition to Police. That’s Progress”

by Rebecca Heilweil, Vox, June 11, 2020

Microsoft president Brad Smith announced on Thursday that his company did not sell facial recognition to the police, and would not until the government passes federal legislation regulating the technology. His statement follows a Wednesday announcement from Amazon explaining that the company would institute a one-year moratorium on police use of Rekognition, the company’s facial recognition software. (https://tinyurl.com/4df7vsju)

“Cheap, Easy Deepfakes Are Getting Closer to the Real Thing”

by Tom Simonite, Wired, August 5, 2020

Philip Tully, a data scientist at security company FireEye, generated the hoax Hankses to test how easily open-source software from artificial intelligence labs could be adapted to misinformation campaigns. His conclusion: ‘People with not a lot of experience can take these machine-learning models and do pretty powerful things with them,’ he says. (https://tinyurl.com/35cmrf8u)

Do we own our face? What about the ethics of using facial technology to catch perpetrators? AI ethicists have pointed out that many “artificial intelligence” systems, which are sophisticated algorithms that learn from massive stores of data, have been demonstrated to have racial and gender biases. Police have used facial recognition to make arrests, but inaccuracies coupled with increasing abilities to alter video, call into question how reliable algorithms are. Whether widespread surveillance is even ethical is a larger question, as demonstrated in a July 2020 article in The Atlantic by Ross Anderson called “The Panopticon Is Already Here” [https://tinyurl.com/44svkxke] about China’s use of facial recognition to surveil its population.

Resources

[1] Antonio Regalado, “China’s CRISPR Babies: Read Exclusive Excerpts from the Unseen Original Research,” MIT Technology Review, December 3, 2019, https://www.technologyreview.com/2019/12/03/131752/chinas-crispr-babies-read-exclusive-excerpts-he-jiankui-paper/.

[2] Rebecca Robbins, “The Fight over Facial Recognition Technology Gets Fiercer During the Covid-19 Pandemic,” STAT News, May 5, 2020, https://www.statnews.com/2020/05/05/facial-recognition-technology-covid19-tracking-california-bill/.

[3] Note: Sharon Begley, author of the above STAT News article, was a science journalist whose articles on neuroscience and genetics have been highlighted here and on bioethics.com. She was working on an article for STAT News on non-smoking related lung cancer when she died of the disease on January 16, 2021.