Healthcare

From Kleptopedia

In corporate capitalist economies like the United States, welfare is defined in terms of charity and questionable need. Example: "Welfare refers to government-sponsored assistance programs for individuals and families in need, including programs as health care assistance, food stamps, and unemployment compensation. Welfare programs are typically funded through taxation."

In more egalitarian societies, welfare is often part and parcel with social security. It's the provisions for all citizens to address the responsibilities of liberty, equality and fraternity.

LIFE EXPECTANCY

"There is no subjugation so perfect as that which keeps the appearance of freedom for in that way one captures volition itself. The most absolute authority is that which penetrates into a man's innermost being and concerns itself no less with his will than with his actions." - Jean-Jacques Rousseau

BACKGROUND

Life expectancy across a selection of 'first-world' industrialized mixed economy countries.

DATA

Country Male Female Infant Mortality Child Mortality
United States of America 76.6 81.7 5.8 7.3
Great Britain 80.3 83.3 3.8 4.3
France 80.9 85.3 2.7 3.2
Italy 81.9 86.0 2.2 2.6
Sweden 81.7 85.0 1.7 2.1
  • Infant mortality means death of baby during childbirth, per 1000 births.
  • Child mortality means deaths of children between birth and 5 years of age, per 1000.

PANDEMIC

"Coronavirus deals worth billions of pounds have been awarded by the government to “unusual” companies, without advertising or competition." - George Monbiot (15th July 2020)

CORONAVIRUS VACCINE

Thousands of articles and news bulletins celebrate the COVID-19 vaccine development, from the end of the first week of November 2020. Every article and every news report proclaiming coronavirus vaccine is impending, in every media outlet reporting on vaccine trial results, all quotes from experts, all percentages efficacy numbers, all the editorials about game-changing impact; the whole media tsunami is based on a handful of press releases, as follows:

  1. Sputnik V
    • August 11th 2020 @ 92% efficacy Russian vaccine for COVID-19
    • Gamaleya National Center of Epidemiology and Microbiology in Moscow, fast-tracke by Russian government.
    • Reported 92% efficacy based on 20 COVID-19 cases recorded in the participating trial group.
    • No peer review. No further data.
    • Branded controversial by American and European media. News messaging critical of Sputnik V interim results - not the vaccine science itself but the relatively small size of trial participants. Very little attention given.
  2. BioNTech/Pfizer
    • November 9th 2020 @ BioNTech/Pfizer vaccine announces 90% efficacy
    • Press release report trial interim results have a vaccine efficacy rate of over 90% based on 94 cases of COVID-19 from their group of 38955 participants.
    • No further data.
    • Worldwide positive attention.
  3. Moderna
    • November 16th 2020 @ Moderna 95% efficacy COVID-19 vaccine
    • Interim press release that 95 participants in its trial of 30000 healthy adults developed COVID-19, with 90 in the placebo group and 5 having received the vaccine. This is taken to equate to 94.5% effective.
    • No further data. Zero.
    • Enthusiastic positive attention.

PROGRESS

  1. Cancer
    • T-cell therapy. 80% effective. But only after chemo and radio. Why? Because chemo and radio profits come first. Private healthcare.

PUBLIC MONEY? PRIVATE PROFIT

This stinks. It stinks worse than any of the other carrion this government has buried. Every day for the past fortnight, I’ve been asking myself why this scandal isn’t all over the front pages. Under cover of the pandemic, the government has awarded contracts worth billions of pounds for equipment on which our lives depend, without competition or transparency. It has trampled its own rules, operated secretly and made incomprehensible and – in some cases – highly suspicious decisions.

Let’s begin with the latest case, unearthed by investigative journalists at the Guardian and openDemocracy. It involves a contract to test the effectiveness of the government’s coronavirus messaging, worth £840,000. It was issued by the Cabinet Office, which is run by Michael Gove. The deal appears to have been struck on March 3, but the only written record in the public domain is a letter written on June 5, retrospectively offering the contract that had already been granted. There was no advertisement for the work, and no competition. No official notice of the award has yet been published. The deal appears to have been done with a handshake and a slap on the back.

But we do know who the contract went to. It’s a company called Public First, owned by a married couple, James Frayne and Rachel Wolf. Since 2000, James Frayne has worked on political campaigns with Dominic Cummings, Boris Johnson’s chief adviser. When Michael Gove was education secretary, he brought both Cummings and Frayne into his department. Cummings was Gove’s chief political adviser, while Frayne was his director of communications. At roughly the same time, in 2010, Gove’s Department awarded Rachel Wolf a £500,000 contract to promote his “free schools” obsession. Guess what? That didn’t go to competitive tender, either. Rachel Wolf co-wrote the Conservative party’s election manifesto in 2019.

In response to these revelations, the government claims it had to override the usual rules for public procurement because it was responding to an emergency. There are several problems with this claim. The first is that it had six weeks to prepare for the pandemic, before the deal was done. The second is that, of the four contracted services later listed on the government’s website, two were not for testing the government’s coronavirus messaging at all, but for “EU exit comms”: in other words, Brexit. The coronavirus work, according to this list, did not begin until May 27. The Cabinet Office now claims that when it said “EU exit”, it meant coronavirus. This seems an odd mistake to make. The third problem is that the government’s communications on the pandemic have been disastrous. Did it choose to ignore Public First’s “emergency” work, or was it of little value?

On Friday, the Good Law Project issued proceedings in the High Court against Michael Gove, alleging breaches of procurement law and apparent bias in the grant of the contract to his long-standing associates. It is crowdfunding the challenge.

But this, extraordinary as it is, is not the strangest of the cases the Good Law Project is taking on. Another involves a pest control company in Sussex called PestFix, which has listed net assets of only £18,000. On April 13, again without public advertisement or competition, the government awarded PestFix a £32 million contract to supply surgical gowns. PestFix is not a manufacturer, but an intermediary (its founder calls it a public health supply business): its role was to order the gowns from China. But, perhaps because of its lack of assets, the government gave it a deposit worth 75% of the value of the contract. The government’s own rules state that prepayments should be made only “in extremely limited and exceptional circumstances”, and even then must be “capped at 25% of the value of the contract”.

If the government had to provide the money upfront, why didn’t it order the gowns itself? And why, of all possible outsourcers, did it choose PestFix? In the two weeks before it awarded this contract, it was approached by 16,000 companies offering to supply protective equipment (PPE). Some of them had a long track record in manufacturing or supplying PPE, and had stocks that could be deployed immediately.

Again, the government relies on the emergency defence to justify its decision. But it issued its initial guidance on preventing infection among health and care workers on January 10. On February 14, it published specific guidance on the use of PPE. So why did it wait until April 13 to strike its “emergency” deal with PestFix? Moreover, it appears to have set the company no deadline for the delivery of the gowns. Astonishingly, even today only half of them appear to have reached the UK, and all those are still sitting in a warehouse in Daventry. On the government’s own admission, “none of the isolation suits delivered so far has been supplied into the NHS”. So much for taking urgent action in response to the emergency.

Again, the contract is surrounded by secrecy. Crucial sections, such as the price paid for the gowns, have been redacted. Bizarrely, the award notice initially stated that the contract was worth £108 million. But in responding to the lawsuit, the government claimed it had made a mistake: the real value is £32 million. Apparently, it struck “further contracts” with PestFix for other items of equipment. It has so far failed to reveal what these might be, or to publish the contracts. It is worth remembering that while all this was happening, frontline health and care workers were dying as a result of inadequate supplies of PPE.

There are plenty of other cases: such as the employment agency with net assets of £623, which was awarded an £18 million government contract to supply facemasks; the confectionery wholesaler given a £100 million contract to supply PPE; and the £250 million channelled through a “family office” registered in Mauritius, specialising in currency trading, offshore property and private equity, also to supply protective medical equipment. Altogether, billions of pounds’ worth of contracts appear to have been granted, often to surprising companies, without competition. I think we may reasonably ask what the hell is going on.

This is not just about value for money, important as that is. Transparent, competitive tendering is a crucial defence against cronyism and corruption. It is essential to integrity in public life and public trust in politics. But the government doesn’t seem to care. As the scandal over Dominic Cummings’s trip to Durham shows, its strategy is to brazen out disgrace until public outrage subsides. We know it cheats and lies. It knows that we know, and it doesn’t care.

But these things matter. People die when the government gets them wrong. Our challenge is to discover how to make them count.

BIOTECH HEALTH

  • Biotech: chemical warfare.
  • Agriculture.
  • Biomass.
  • GMO. Monsanto. Food health. Etc.

WHAT IS BIOTECHNOLOGY?

Biotechnology is nearly as old as humanity itself. The food you eat and the pets you love? You can thank our distant ancestors for kickstarting the agricultural revolution, using artificial selection for crops, livestock, and other domesticated animals. When Edward Jenner invented vaccines and when Alexander Fleming discovered antibiotics, they were harnessing the power of biotechnology. And, of course, modern civilization would hardly be imaginable without the fermentation processes that gave us beer, wine, and cheese!

When he coined the term in 1919, the agriculturalist Karl Ereky described ‘biotechnology’ as “all lines of work by which products are produced from raw materials with the aid of living things.” In modern biotechnology, researchers modify DNA and proteins to shape the capabilities of living cells, plants, and animals into something useful for humans. Biotechnologists do this by sequencing, or reading, the DNA found in nature, and then manipulating it in a test tube – or, more recently, inside of living cells.

In fact, the most exciting biotechnology advances of recent times are occurring at the microscopic level (and smaller!) within the membranes of cells. After decades of basic research into decoding the chemical and genetic makeup of cells, biologists in the mid-20th century launched what would become a multi-decade flurry of research and breakthroughs. Their work has brought us the powerful cellular tools at biotechnologists’ disposal today. In the coming decades, scientists will use the tools of biotechnology to manipulate cells with increasing control, from precision editing of DNA to synthesizing entire genomes from their basic chemical building blocks. These cells could go on to become bomb-sniffing plants, miracle cancer drugs, or ‘de-extincted’ wooly mammoths. And biotechnology may be a crucial ally in the fight against climate change.

But rewriting the blueprints of life carries an enormous risk. To begin with, the same technology being used to extend our lives could instead be used to end them. While researchers might see the engineering of a supercharged flu virus as a perfectly reasonable way to better understand and thus fight the flu, the public might see the drawbacks as equally obvious: the virus could escape, or someone could weaponize the research. And the advanced genetic tools that some are considering for mosquito control could have unforeseen effects, possibly leading to environmental damage. The most sophisticated biotechnology may be no match for Murphy’s Law.

While the risks of biotechnology have been fretted over for decades, the increasing pace of progress – from low cost DNA sequencing to rapid gene synthesis to precision genome editing – suggests biotechnology is entering a new realm of maturity regarding both beneficial applications and more worrisome risks. Adding to concerns, DIY scientists are increasingly taking biotech tools outside of the lab. For now, many of the benefits of biotechnology are concrete while many of the risks remain hypotheticals, but it is better to be proactive and cognizant of the risks than to wait for something to go wrong first and then attempt to address the damage.

HOW DOES BIOTECHNOLOGY HELP US?

Satellite images make clear the massive changes that mankind has made to the surface of the Earth: cleared forests, massive dams and reservoirs, millions of miles of roads. If we could take satellite-type images of the microscopic world, the impact of biotechnology would be no less obvious. The majority of the food we eat comes from engineered plants, which are modified – either via modern technology or by more traditional artificial selection – to grow without pesticides, to require fewer nutrients, or to withstand the rapidly changing climate. Manufacturers have substituted petroleum-based ingredients with biomaterials in many consumer goods, such as plastics, cosmetics, and fuels. Your laundry detergent? It almost certainly contains biotechnology. So do nearly all of your cotton clothes.

But perhaps the biggest application of biotechnology is in human health. Biotechnology is present in our lives before we’re even born, from fertility assistance to prenatal screening to the home pregnancy test. It follows us through childhood, with immunizations and antibiotics, both of which have drastically improved life expectancy. Biotechnology is behind blockbuster drugs for treating cancer and heart disease, and it’s being deployed in cutting-edge research to cure Alzheimer’s and reverse aging. The scientists behind the technology called CRISPR/Cas9 believe it may be the key to safely editing DNA for curing genetic disease. And one company is betting that organ transplant waiting lists can be eliminated by growing human organs in chimeric pigs.

RISKS

Along with excitement, the rapid progress of research has also raised questions about the consequences of biotechnology advances. Biotechnology may carry more risk than other scientific fields: microbes are tiny and difficult to detect, but the dangers are potentially vast. Further, engineered cells could divide on their own and spread in the wild, with the possibility of far-reaching consequences. Biotechnology could most likely prove harmful either through the unintended consequences of benevolent research or from the purposeful manipulation of biology to cause harm. One could also imagine messy controversies, in which one group engages in an application for biotechnology that others consider dangerous or unethical.

Unintended Consequences

Sugarcane farmers in Australia in the 1930’s had a problem: cane beetles were destroying their crop. So, they reasoned that importing a natural predator, the cane toad, could be a natural form of pest control. What could go wrong? Well, the toads became a major nuisance themselves, spreading across the continent and eating the local fauna (except for, ironically, the cane beetle).

While modern biotechnology solutions to society’s problems seem much more sophisticated than airdropping amphibians into Australia, this story should serve as a cautionary tale. To avoid blundering into disaster, the errors of the past should be acknowledged.

In 2014, the Center for Disease Control came under scrutiny after repeated errors led to scientists being exposed to Ebola, anthrax, and the flu. And a professor in the Netherlands came under fire in 2011 when his lab engineered a deadly, airborne version of the flu virus, mentioned above, and attempted to publish the details. These and other labs study viruses or toxins to better understand the threats they pose and to try to find cures, but their work could set off a public health emergency if a deadly material is released or mishandled as a result of human error.

Mosquitoes are carriers of disease – including harmful and even deadly pathogens like Zika, malaria, and dengue – and they seem to play no productive role in the ecosystem. But civilians and lawmakers are raising concerns about a mosquito control strategy that would genetically alter and destroy disease-carrying species of mosquitoes. Known as a ‘gene drive,’ the technology is designed to spread a gene quickly through a population by sexual reproduction. For example, to control mosquitoes, scientists could release males into the wild that have been modified to produce only sterile offspring. Scientists who work on gene drive have performed risk assessments and equipped them with safeguards to make the trials as safe as possible. But, since a man-made gene drive has never been tested in the wild, it’s impossible to know for certain the impact that a mosquito extinction could have on the environment. Additionally, there is a small possibility that the gene drive could mutate once released in the wild, spreading genes that researchers never planned for. Even armed with strategies to reverse a rogue gene drive, scientists may find gene drives difficult to control once they spread outside the lab.

When scientists went digging for clues in the DNA of people who are apparently immune to HIV, they found that the resistant individuals had mutated a protein that serves as the landing pad for HIV on the surface of blood cells. Because these patients were apparently healthy in the absence of the protein, researchers reasoned that deleting its gene in the cells of infected or at-risk patients could be a permanent cure for HIV and AIDS. With the arrival of the new tool, a set of ‘DNA scissors’ called CRISPR/Cas9, that holds the promise of simple gene surgery for HIV, cancer, and many other genetic diseases, the scientific world started to imagine nearly infinite possibilities. But trials of CRISPR/Cas9 in human cells have produced troubling results, with mutations showing up in parts of the genome that shouldn’t have been targeted for DNA changes. While a bad haircut might be embarrassing, the wrong cut by CRISPR/Cas9 could be much more serious, making you sicker instead of healthier. And if those edits were made to embryos, instead of fully formed adult cells, then the mutations could permanently enter the gene pool, meaning they will be passed on to all future generations. So far, prominent scientists and prestigious journals are calling for a moratorium on gene editing in viable embryos until the risks, ethics, and social implications are better understood.

Weaponizing Biology

The world recently witnessed the devastating effects of disease outbreaks, in the form of Ebola and the Zika virus – but those were natural in origin. The malicious use of biotechnology could mean that future outbreaks are started on purpose. Whether the perpetrator is a state actor or a terrorist group, the development and release of a bioweapon, such as a poison or infectious disease, would be hard to detect and even harder to stop. Unlike a bullet or a bomb, deadly cells could continue to spread long after being deployed. The US government takes this threat very seriously, and the threat of bioweapons to the environment should not be taken lightly either.

Developed nations, and even impoverished ones, have the resources and know-how to produce bioweapons. For example, North Korea is rumored to have assembled an arsenal containing “anthrax, botulism, hemorrhagic fever, plague, smallpox, typhoid, and yellow fever,” ready in case of attack. It’s not unreasonable to assume that terrorists or other groups are trying to get their hands on bioweapons as well. Indeed, numerous instances of chemical or biological weapon use have been recorded, including the anthrax scare shortly after 9/11, which left 5 dead after the toxic cells were sent through the mail. And new gene editing technologies are increasing the odds that a hypothetical bioweapon targeted at a certain ethnicity, or even a single individual like a world leader, could one day become a reality.

While attacks using traditional weapons may require much less expertise, the dangers of bioweapons should not be ignored. It might seem impossible to make bioweapons without plenty of expensive materials and scientific knowledge, but recent advances in biotechnology may make it even easier for bioweapons to be produced outside of a specialized research lab. The cost to chemically manufacture strands of DNA is falling rapidly, meaning it may one day be affordable to ‘print’ deadly proteins or cells at home. And the openness of science publishing, which has been crucial to our rapid research advances, also means that anyone can freely Google the chemical details of deadly neurotoxins. In fact, the most controversial aspect of the supercharged influenza case was not that the experiments had been carried out, but that the researchers wanted to openly share the details.

On a more hopeful note, scientific advances may allow researchers to find solutions to biotechnology threats as quickly as they arise. Recombinant DNA and biotechnology tools have enabled the rapid invention of new vaccines which could protect against new outbreaks, natural or man-made. For example, less than 5 months after the World Health Organization declared Zika virus a public health emergency, researchers got approval to enroll patients in trials for a DNA vaccine.

ETHICS OF BIOTECHNOLOGY

Biotechnology doesn’t have to be deadly, or even dangerous, to fundamentally change our lives. While humans have been altering genes of plants and animals for millennia — first through selective breeding and more recently with molecular tools and chimeras — we are only just beginning to make changes to our own genomes (amid great controversy).

Cutting-edge tools like CRISPR/Cas9 and DNA synthesis raise important ethical questions that are increasingly urgent to answer. Some question whether altering human genes means “playing God,” and if so, whether we should do that at all. For instance, if gene therapy in humans is acceptable to cure disease, where do you draw the line? Among disease-associated gene mutations, some come with virtual certainty of premature death, while others put you at higher risk for something like Alzheimer’s, but don’t guarantee you’ll get the disease. Many others lie somewhere in between. How do we determine a hard limit for which gene surgery to undertake, and under what circumstances, especially given that the surgery itself comes with the risk of causing genetic damage? Scholars and policymakers have wrestled with these questions for many years, and there is some guidance in documents such as the United Nations’ Universal Declaration on the Human Genome and Human Rights.

And what about ways that biotechnology may contribute to inequality in society? Early work in gene surgery will no doubt be expensive – for example, Novartis plans to charge $475,000 for a one-time treatment of their recently approved cancer therapy, a drug which, in trials, has rescued patients facing certain death. Will today’s income inequality, combined with biotechnology tools and talk of ‘designer babies’, lead to tomorrow’s permanent underclass of people who couldn’t afford genetic enhancement?

Advances in biotechnology are escalating the debate, from questions about altering life to creating it from scratch. For example, a recently announced initiative called GP-Write has the goal of synthesizing an entire human genome from chemical building blocks within the next 10 years. The project organizers have many applications in mind, from bringing back wooly mammoths to growing human organs in pigs. But, as critics pointed out, the technology could make it possible to produce children with no biological parents, or to recreate the genome of another human, like making cellular replicas of Einstein. “To create a human genome from scratch would be an enormous moral gesture,” write two bioethicists regarding the GP-Write project. In response, the organizers of GP-Write insist that they welcome a vigorous ethical debate, and have no intention of turning synthetic cells into living humans. But this doesn’t guarantee that rapidly advancing technology won’t be applied in the future in ways we can’t yet predict.

DNA Sequencing

It’s nearly impossible to imagine modern biotechnology without DNA sequencing. Since virtually all of biology centers around the instructions contained in DNA, biotechnologists who hope to modify the properties of cells, plants, and animals must speak the same molecular language. DNA is made up of four building blocks, or bases, and DNA sequencing is the process of determining the order of those bases in a strand of DNA. Since the publication of the complete human genome in 2003, the cost of DNA sequencing has dropped dramatically, making it a simple and widespread research tool.

Benefits: Sonia Vallabh had just graduated from law school when her mother died from a rare and fatal genetic disease. DNA sequencing showed that Sonia carried the fatal mutation as well. But far from resigning to her fate, Sonia and her husband Eric decided to fight back, and today they are graduate students at Harvard, racing to find a cure. DNA sequencing has also allowed Sonia to become pregnant, since doctors could test her eggs for ones that don’t have the mutation. While most people’s genetic blueprints don’t contain deadly mysteries, our health is increasingly supported by the medical breakthroughs that DNA sequencing has enabled. For example, researchers were able to track the 2014 Ebola epidemic in real time using DNA sequencing. And pharmaceutical companies are designing new anti-cancer drugs targeted to people with a specific DNA mutation. Entire new fields, such as personalized medicine, owe their existence to DNA sequencing technology.

Risks: Simply reading DNA is not harmful, but it is foundational for all of modern biotechnology. As the saying goes, knowledge is power, and the misuse of DNA information could have dire consequences. While DNA sequencing alone cannot make bioweapons, it’s hard to imagine waging biological warfare without being able to analyze the genes of infectious or deadly cells or viruses. And although one’s own DNA information has traditionally been considered personal and private, containing information about your ancestors, family, and medical conditions, governments and corporations increasingly include a person’s DNA signature in the information they collect. Some warn that such databases could be used to track people or discriminate on the basis of private medical records – a dystopian vision of the future familiar to anyone who’s seen the movie GATTACA. Even supplying patients with their own genetic information has come under scrutiny, if it’s done without proper context, as evidenced by the dispute between the FDA and the direct-to-consumer genetic testing service 23andMe. Finally, DNA testing opens the door to sticky ethical questions, such as whether to carry to term a pregnancy after the fetus is found to have a genetic mutation.

Recombinant DNA

The modern field of biotechnology was born when scientists first manipulated – or ‘recombined’ – DNA in a test tube, and today almost all aspects of society are impacted by so-called ‘rDNA’. Recombinant DNA tools allow researchers to choose a protein they think may be important for health or industry, and then remove that protein from its original context. Once removed, the protein can be studied in a species that’s simple to manipulate, such as E. coli bacteria. This lets researchers reproduce it in vast quantities, engineer it for improved properties, and/or transplant it into a new species. Modern biomedical research, many best-selling drugs, most of the clothes you wear, and many of the foods you eat rely on rDNA biotechnology.

Benefits: Simply put, our world has been reshaped by rDNA. Modern medical advances are unimaginable without the ability to study cells and proteins with rDNA and the tools used to make it, such as PCR, which helps researchers ‘copy and paste’ DNA in a test tube. An increasing number of vaccines and drugs are the direct products of rDNA. For example, nearly all insulin used in treating diabetes today is produced recombinantly. Additionally, cheese lovers may be interested to know that rDNA provides ingredients for a majority of hard cheeses produced in the West. Many important crops have been genetically modified to produce higher yields, withstand environmental stress, or grow without pesticides. Facing the unprecedented threats of climate change, many researchers believe rDNA and GMOs will be crucial in humanity’s efforts to adapt to rapid environmental changes.

Risks: The inventors of rDNA themselves warned the public and their colleagues about the dangers of this technology. For example, they feared that rDNA derived from drug-resistant bacteria could escape from the lab, threatening the public with infectious superbugs. And recombinant viruses, useful for introducing genes into cells in a petri dish, might instead infect the human researchers. Some of the initial fears were allayed when scientists realized that genetic modification is much trickier than initially thought, and once the realistic threats were identified – like recombinant viruses or the handling of deadly toxins – safety and regulatory measures were put in place. Still, there are concerns that rogue scientists or bioterrorists could produce weapons with rDNA. For instance, it took researchers just 3 years to make poliovirus from scratch in 2006, and today the same could be accomplished in a matter of weeks. Recent flu epidemics have killed over 200,000, and the malicious release of an engineered virus could be much deadlier – especially if preventative measures, such as vaccine stockpiles, are not in place.

DNA Synthesis

Synthesizing DNA has the advantage of offering total researcher control over the final product. With many of the mysteries of DNA still unsolved, some scientists believe the only way to truly understand the genome is to make one from its basic building blocks. Building DNA from scratch has traditionally been too expensive and inefficient to be very practical, but in 2010, researchers did just that, completely synthesizing the genome of a bacteria and injecting it into a living cell. Since then, scientists have made bigger and bigger genomes, and recently, the GP-Write project launched with the intention of tackling perhaps the ultimate goal: chemically fabricating an entire human genome. Meeting this goal – and within a 10 year timeline – will require new technology and an explosion in manufacturing capacity. But the project’s success could signal the impact of synthetic DNA on the future of biotechnology.

Benefits: Plummeting costs and technical advances have made the goal of total genome synthesis seem much more immediate. Scientists hope these advances, and the insights they enable, will ultimately make it easier to make custom cells to serve as medicines or even bomb-sniffing plants. Fantastical applications of DNA synthesis include human cells that are immune to all viruses or DNA-based data storage. Prof. George Church of Harvard has proposed using DNA synthesis technology to ‘de-extinct’ the passenger pigeon, wooly mammoth, or even Neanderthals. One company hopes to edit pig cells using DNA synthesis technology so that their organs can be transplanted into humans. And DNA is an efficient option for storing data, as researchers recently demonstrated when they stored a movie file in the genome of a cell.


Risks: DNA synthesis has sparked significant controversy and ethical concerns. For example, when the GP-Write project was announced, some criticized the organizers for the troubling possibilities that synthesizing genomes could evoke, likening it to playing God. Would it be ethical, for instance, to synthesize Einstein’s genome and transplant it into cells? The technology to do so does not yet exist, and GP-Write leaders have backed away from making human genomes in living cells, but some are still demanding that the ethical debate happen well in advance of the technology’s arrival. Additionally, cheap DNA synthesis could one day democratize the ability to make bioweapons or other nuisances, as one virologist demonstrated when he made the horsepox virus (related to the virus that causes smallpox) with DNA he ordered over the Internet. (It should be noted, however, that the other ingredients needed to make the horsepox virus are specialized equipment and deep technical expertise.)

Genome Editing

Many diseases have a basis in our DNA, and until recently, doctors had very few tools to address the root causes. That appears to have changed with the recent discovery of a DNA editing system called CRISPR/Cas9. (A note on terminology – CRISPR is a bacterial immune system, while Cas9 is one protein component of that system, but both terms are often used to refer to the protein.) It operates in cells like a DNA scissor, opening slots in the genome where scientists can insert their own sequence. While the capability of cutting DNA wasn’t unprecedented, Cas9 dusts the competition with its effectiveness and ease of use. Even though it’s a biotech newcomer, much of the scientific community has already caught ‘CRISPR-fever,’ and biotech companies are racing to turn genome editing tools into the next blockbuster pharmaceutical.

Benefits: Genome editing may be the key to solving currently intractable genetic diseases such as cystic fibrosis, which is caused by a single genetic defect. If Cas9 can somehow be inserted into a patient’s cells, it could fix the mutations that cause such diseases, offering a permanent cure. Even diseases caused by many mutations, like cancer, or caused by a virus, like HIV/AIDS, could be treated using genome editing. Just recently, an FDA panel recommended a gene therapy for cancer, which showed dramatic responses for patients who had exhausted every other treatment. Genome editing tools are also used to make lab models of diseases, cells that store memories, and tools that can detect epidemic viruses like Zika or Ebola. And as described above, if a gene drive, which uses Cas9, is deployed effectively, we could eliminate diseases such as malaria, which kills nearly half a million people each year.

Risks: Cas9 has generated nearly as much controversy as it has excitement, because genome editing carries both safety issues and ethical risks. Cutting and repairing a cell’s DNA is not risk-free, and errors in the process could make a disease worse, not better. Genome editing in reproductive cells, such as sperm or eggs, could result in heritable genetic changes, meaning dangerous mutations could be passed down to future generations. And some warn of unethical uses of genome editing, fearing a rise of ‘designer babies’ if parents are allowed to choose their children’s traits, even though there are currently no straightforward links between one’s genes and their intelligence, appearance, etc. Similarly, a gene drive, despite possibly minimizing the spread of certain diseases, has the potential to create great harm since it is intended to kill or modify an entire species. A successful gene drive could have unintended ecological impacts, be used with malicious intent, or mutate in unexpected ways. Finally, while the capability doesn’t currently exist, it’s not out of the realm of possibility that a rogue agent could develop genetically selective bioweapons to target individuals or populations with certain genetic traits.

IMPLANTS

Medical biotechnology allows scientists to make changes to the genomes of living things. Genome editing, also called gene editing, is the modification of genes. It is a field of genetics that’s growing quickly. Genome editing could make these things possible… if people want them to be.

See this timeline for up to date developments in CRISPR/Cas9 genetic engineering.

CRISPR/Cas9

CRISPR, or Clustered Regularly Interspaced Short Palindromic Repeats, is an innovative technology that allows geneticists to alter the genome by adding, deleting, or changing portions of the DNA sequence. CRISPR has entirely changed the genome engineering sector by providing a cheap and efficient way to alter DNA. The technology’s many potential applications include correcting genetic mutations, treating existing diseases in animals and humans, and enhancing varieties of crops. Its use in humans also poses a number of ethical dilemmas.

Check out this NYU CRISPR/Cas9 Report for detailed rundown of processes, possibilities and gene editing pros and cons.

HOW DOES CRISPR WORK?

The basic CRISPR-Cas9 system consists of two molecules that introduce one or more modifications into DNA. The first, Cas9, is an enzyme that acts as a pair of ‘molecular scissors’ that can cut both strands of DNA at a specific location so that pieces of new DNA can then be added, or existing DNA can be removed. A modified version of Cas9 has been developed to only cut one strand of DNA, while another has been developed to bind to DNA without any cut at all. The second molecule, a piece of RNA called guide RNA (gRNA), consists of a small piece of pre-designed RNA sequence (about 20 bases long) located within a longer RNA scaffold. The scaffold binds to DNA and the pre-designed sequence guides Cas9 to the correct location. The guide RNA has RNA bases that are complementary to those of the target DNA sequence. This should mean that the guide RNA will only bind to and deliver Cas9 to the target sequence. When Cas9 cuts the DNA, the cell recognizes that the DNA is damaged and tries to repair it. Scientists thus use the cell’s own DNA repair machinery to introduce changes to one or more genes in the genome.

CONSIDERATIONS

What are the pros and cons of having access to techniques like these? Scientists have the ability to change certain traits in an unborn child? CRISPR-Cas9 could potentially change the colour of that child’s eyes? Or eliminate the chances of them developing a genetic disease before they are born?

Scientists already edit plant genes to make plants more nutritious for the humans that eat them. Scientists also use CRISPR to edit animal genes so that the animals are better able to resist diseases. And the techniques that work on animals can also be used on humans. They can be used to help with many health problems, most obviously diseases that are caused by genetic problems.

A technique called germline editing is more controversial. Germline editing is the editing of reproductive cells. In humans, these are sperm and eggs. With this type of editing, scientists could make changes to humans that would be passed on to their children. This would mean that certain genetic diseases could eventually be wiped out altogether. But gene editing remains an extremely controversial topic. That’s because it raises some ethical concerns.

Gene editing could get rid of diseases that run in the family. But they could also change other features like hair colour, eye colour, or height. They could create a child based on the wishes of the parents-to-be. And this is a major concern for many people involved in the field.

CONCERNS

There is a high chance of errors occurring during the gene editing process. Errors can have devastating consequences. For example, a researcher can accidentally delete a gene. This can lead to developmental defects in the fetus. Any errors in germline editing could be passed on from generation to generation.

Once people have access to the technology, it might be hard to control what it’s used for. This could create a slippery slope. Parents-to-be might use the technology in ways that are considered sexist or racist. For example, if parents can choose their baby’s sex, is this a way of allowing sexism? If parents can choose physical traits that are more common in races they find more attractive, is this a form of racism? This technology could be extremely costly. This means that only some people will be able to afford it. However, there are arguments on the other side of these concerns, too.

How do scientists address the issues of safety and chances of error? Scientists state that nothing in the world of experimental science is 100% safe. The question is not “Is it safe?” Instead, it’s “Is it safe enough to be worth pursuing?” In other words, do the benefits outweigh the risks? Remember, gene editing could help scientists diagnose and eliminate diseases. Scientists and the body of government funding the research must agree on their answer to this question.

However, addressing the slippery slope issue seems to be more challenging. What qualifies as a correction of a deficiency? What qualifies as an unnecessary change? There is no clear-cut definition of either of these. So I encourage you, as future scientists, to think about the ethical boundaries and potential consequences of genome editing. Do you think the benefits outweigh the costs?

GENETIC ENGINEERING

Why should we care about genetic engineering? It could help eliminate hundreds of diseases. It could eliminate many forms of pain and anxiety. It could increase intelligence and longevity. It could change the scale of human happiness and productivity by many orders of magnitude. There are only a handful of areas of research in the world with this much potential.

Zooming out, genetic engineering could be viewed as a historical event on par with the cambrian explosion in how it changed the pace of evolution. When most people think of evolution they’re thinking about biological evolution through natural selection, but this is just one form. Over time, it will likely be superseded by other forms of evolution that act much more quickly. What are some of these? The candidates in my mind are (1) artificial intelligence, or synthetic life, breeding and mutating at a rapid rate (2) biological life, with genetic engineering being used to take a more directive approach, and (3) some merged hybrid of the two. Instead of waiting hundreds of thousands of years for beneficial mutations to show up (as with natural selection), we could start to see beneficial changes every year.

Consider where we are today:

  • Humans have been genetically engineering organisms for thousands of years using selective breeding (as opposed to natural selection).
  • Starting in the 1970’s, humans started modifying the DNA directly of plants and animals, creating GMO foods, etc.
  • Today, half a million babies are born each year using in vitro fertilization (IVF). Increasingly, this includes sequencing the embryos to screen them for diseases, and bringing the most viable embryo to term (a form of genetic engineering, without actually making edits).
  • In 2018, He Jiankui created the first genetically modified babies in China.
  • In 2019, a number of FDA approved clinical trials for gene therapies have begun.
  • So genetic engineering is already happening on humans today, and I don’t see any reason why it would stop.
  • With the creation of CRISPR and similar techniques, we’ve seen an explosion in research around making actual edits to DNA. I recommend reading Jennifer Doudna and Samuel Sternberg’s book, A Crack In Creation, for a great overview of this topic.
  • A lot of research is happening, but actually editing human DNA won’t be allowed. You don’t actually think people should be having designer babies do you?

Some will say that every child has the right to remain genetically unmodified, and others will say that every child has the right to be born free of preventable diseases. We make many decisions on behalf of children to try and help them have a better life, and I don’t see why this would be any exception.

Many new medical treatments have similar ethical issues as they are being developed. Typically, new drugs are tested on mice, then terminally ill patients, then slowly wider sets of people. They go through FDA trials for safety and efficacy. There is a well established path to test new therapies. Genetic engineering may have more potential (both for good and for harm) than most new medical treatments, but this doesn’t mean that a similar process can’t be followed.

The American National Academy of Sciences and National Academy of Medicine also gave qualified support to human genome editing in 2017 “once answers have been found to safety and efficiency problems…but only for serious conditions under stringent oversight.”

LUDDITE BULLSHIT

As for “designer babies”, people use this term to mean choosing traits like height or eye color that are not related to health. What's more, it won’t just be babies. Adults will be genetically modified at some point as well. For many it seems wrong to “play god” and move into this territory.

Think about surgery. Three hundred years ago, it must have seemed quite strange to “play god” and cut open a human body. Surgery was also an incredibly risky and crude process (someone’s arm or leg might be amputated on a battlefield in an attempt to save their life, for instance). Over time, surgery became much safer, and we started to use it in less life threatening situations. Today, people undergo purely elective or cosmetic surgery.

The same thing will likely be true with genetic engineering. It may start off being used only in dire situations where people have no other options, but eventually it could become safe enough where people genetically modify themselves for purely cosmetic reasons (for example, to change their hair color). In my view, there is nothing inherently wrong with people wanting to change, improve, or heal their own bodies, even if some uses are more urgent than others. And everyone should make this choice for themselves (I wouldn’t presume to make the choice for them). We won’t know the long term effects on people for many decades. I certainly wouldn’t want to be one of the first to get it done!

There is a misconception that the first edits made in humans will be totally unpredictable. There are some genes that one in ten people on earth have, that makes them healthier in some way. It will be safer than many people think to introduce this gene into someone who doesn’t have it, since it can be widely studied in the existing population. Most new drugs are introduced into the market with just hundreds or thousands of people who have taken it during trial periods, and this is a sufficient bar to demonstrate safety. So a gene that a billion people in the world already have could potentially be far safer than any new drug that has ever come to market.

In addition, new therapies are often tested on terminally ill people who have no other options, so healthy people likely wouldn’t be the initial market. This doesn’t mean that there can’t be other risks in the procedure, but the idea that an edit to a human genome would have entirely unpredictable results is false.

Many conditions are not controlled by one or two genes. So it won’t be as simple as you say to eradicate disease. This is true. Diseases exist on a spectrum from having a single gene culprit to having many thousands of risk variants which increase or decrease susceptibility to environmental factors. A growing body of research is advancing from uncovering these monogenic (single gene) causes of diseases to uncovering the causes of more complex (polygenic) diseases. Results are improving quickly as a consequence of larger datasets, cheaper sequencing, and use of machine learning. Even in a world where only simple gene edits were possible, a lot of human suffering could be eliminated. For instance, Verve is developing gene therapies to make heart disease, one of the leading causes of death in the world, less prevalent with relatively small edits. But other conditions, like depression or diabetes, don’t seem to be caused by a single gene, or even a handful of genes.

Luckily, machine learning (and techniques like deep learning) are well suited to solving complex, multi-variate, problems like polygenic risk scoring, and machine learning is improving at an incredible rate right now. Companies like GenomicPrediction have started offering polygenic risk scores to expecting parents. In addition, the datasets of sequenced genomes keep getting larger (some have over a million sequenced genomes at this point) which will improve the accuracy of the machine learning models over time.

Many things aren’t controlled by genetics. You can’t make happy/healthy humans just with genetic engineering. There are many environmental and lifestyle factors to consider, in addition to genetics. The lifestyle/nurture components are hard challenges in their own right, but thankfully we have some amount of control over them. For instance, we can eat healthier food, go for walks, or exercise. But in contrast, we have very little control of our genetics today.

Most people take it as a given that they can never change their genes, which is actually quite sad if you think about it. It feels terrible to be stuck in any situation where you’re powerless to change it. Imagine the person who continually struggles with their weight, no matter how much they focus on exercise and diet, comparing themselves to people who seem to eat whatever they want without gaining a pound. Nature can be very cruel to us, and genes can create an uneven playing field in life. Genetic engineering may not be the whole solution, but it would certainly unlock a big piece of it.

It’s a slippery slope from disease prevention to enhancement, where do we draw the line? There isn’t a clear line, and humans won’t draw one. The overton window will continue to shift as people become more comfortable with genetic engineering.

Genetic engineering will start by being focused on disease prevention, because this is the most socially acceptable form of it at the moment. But, for instance, if you have a gene that creates low bone density (making you predisposed to osteoporosis), and you correct this with genetic engineering, are your stronger bones preventing disease or are they an enhancement (enabling you to play sports and lift heavy things)? The answer is both. There are many blurry lines like this. To me, the goal is just to improve the human condition, so the distinction between preventing bad outcomes and creating good outcomes is less relevant.

In addition, it is worth noting that we do things all the time today to “enhance” the human body (wearing running shoes, putting on sunblock, corrective lens, etc). And we even do things to enhance ourselves genetically today, like choosing who to have children with or couples who do IVF screening. Genetic enhancement may be scary to some people today, but I think this is mainly just because it is new. Over time, it could be considered as normal as getting LASIK surgery to fix your eyesight.

If everyone wants to have a certain trait, won’t this create less diversity in the world?

There are some genes, like those which increase your risk of heart disease, which most people will want to eliminate. So in that sense there might be less genetic diversity. But I don’t think this will be an overwhelming trend for two reasons. The first is that there is great variety in human preferences (in what is considered beautiful, for instance) and the second is that many people have a desire to stand out and be unique. If it becomes cheap and ubiquitous to become some definition of beautiful then it will no longer hold the same cache, and preferences will evolve, just like in fashion. When you can be whomever you want, I think we’ll actually see much greater diversity, not less.

You can see a glimpse of what this might look in video games today, where people can create their own avatar. When people can be whatever character they want, the range of expression is much greater than in real life. Genetic engineering could also help same-sex couples have genetically related children, which would be a new development. And it could even lead to children which are the product of more than two people. Imagine a child that is the product of ten, or even a hundred, people.

Finally, we may see people change themselves in ways that can’t occur naturally today (webbed fingers? scales? night vision like a cat?). If we are truly able to master genetic engineering over the coming century, there will be many beautiful new forms of individual expression that we can’t even imagine today. The very idea of what it means to be human will change.

Many great entrepreneurs and artists had ADHD, Autism, depression, schizophrenia and other conditions which people may want to eliminate with genetic engineering. In this world, wouldn’t these qualities be eliminated in the name of conformity and risk aversion? Parents aspire for their children to be all sorts of things in life: artists, scientists, politicians, generals, religious leaders, entrepreneurs, etc. These each might have some genetic traits in common, and others that are very different. If it turned out that the best chance of becoming a successful artist was to start with a certain set of genes that included ADHD, I suspect many parents would still opt for this.

We will probably find ourselves in a world with far more brilliant outliers, if parents can get a genetic head start on raising the next Picasso or Einstein. Other parents will opt for balance. There is no right or wrong answer, just preferences. Finally, just because we see examples like the above today, doesn’t mean this needs to be the case in the future. Brilliant people are often “spikey” (outliers in a few areas with severe deficiencies in others), but in a world where genetic engineering is mastered there may be people with all the upside (and more), with little or none of the down side, so there is no guarantee the two need to be linked.

MODERN DAY EUGENICS?

Eugenics was about various political or government groups trying to modify the gene pool through use of force. The ideal outcome here is freedom of choice for every individual. When people can choose how they want to modify and heal themselves (and their children) I think this will be very liberating. There are people in society who might try to abuse this technology (just like any technology), but as long as it is broadly available I think this mitigates a lot of the risk. It’s unlikely that one country or political group would have exclusive access to genetic engineering for long (it is widely researched globally, with a lot of information exchange between groups, both formally and informally).

Some day, genetic engineering may even make it possible to create people who are more tolerant and accepting of others around them. Tribalism is a part of our evolution, and it may have a genetic component. Even children exhibit this quality from a young age. How interesting would it be if people were able to change on this dimension genetically? We don’t know how to do this yet, but it could be possible in the future.

Won’t this create a world of haves and have nots? What if it is only available to rich people? What if it turns out like Gattaca?

Just like many technologies, genetic engineering will almost certainly be available in developed countries first, and it will be expensive. But this is not unique. Cell phones, airplanes, and even basic sanitation are all unevenly distributed around the world. The beauty of technology is that it tends to drive down costs down over time, so it eventually reaches a wider group of people. The cell phone was once a tool only for rich people on Wall St, and it is now available to even the poorest people in the world. There is an open question about whether genetic engineering will follow a cost curve that is more like technology (lower over time following Moore’s law) or like healthcare (rising over time following Eroom’s law), but this has more to do with policy decisions than the technology itself. The main point is that high initial costs are not a good reason to prevent innovation from happening. If we took this approach, we likely wouldn’t have any of the improvements we see in the world today.

It’s also true that genetic engineering will offer advantages to those who can access it. This could create a less even playing field in some ways, but in other ways, it could actually make it more fair. Today, some people win the genetic lottery at birth while others lose (for instance, being prone to depression, a learning disability, etc). If any child could start on a level playing field genetically, this feels like a more fair world. Finally, genetic modification can also take place in adult humans. So even if someone doesn’t have access to it at birth, they may still be able to benefit from genetic engineering later in life.

Gattaca misses this last point, implying that you will always be left behind if weren’t born into an elite group. Reality will probably afford more social mobility, with adults benefiting from new genetic engineering treatments as well. It is a very entertaining film none the less, and I suggest anyone who is interested in the subject watch it.

What if people try to enhance traits like intelligence? Many intelligent people exist in the world today, and, at least the ethical ones don’t seem to pose too much of a problem. So let’s say we doubled the number of smart people in the world (using IQ or whatever definition of smart you prefer) through genetic engineering while keeping the percentage of ethical ones the same or greater. Or similarly, we could double the smartness of the existing people. Would this be a problem? Certainly, some good things would happen. The pace of improvement in society would likely increase, for instance, with many more smart, capable, people solving the world’s challenges.

The biggest negative change might be that the rest of us feel a little left behind or bewildered by all the new progress and areas of research, if we didn’t similarly have our intelligence increased. This boils down to a question of whether you think we should value overall growth in society, or one’s relative place in it, more highly. Each person should answer this for themselves (I don’t think there is one right answer). So it could be a mixed outcome, or very good, depending on your perspective. (Side note: this is a great short story about what it might feel like as society begins to advance.)

PUBLIC REACTIONS

One final thought experiment: if people want to become smarter, do we have the right to stop them? If it is by getting an education, most people would say no. If it is through genetic engineering, how is this different? Should parents be able to choose the genes of their child?

Parents choose all sorts of things that have a major impact on their children (what they eat, how they are educated, whether they are born at all, etc) as their guardian. This is a well-established concept in the law today, with guardians making major decisions for a child until they turn 18 (or an equivalent age in each country). Once children come of age, they will likely take control of their genetic modification, just as they can make a decision to get a tattoo.

It would be a shame if the genes parents chose for their children were fixed indefinitely into the future. As I’ve discussed elsewhere, it’s likely in the future that genes can be modified in living people, not just embryos. So hopefully children aren’t stuck with their parent’s genetic preferences for life.

Imagine that you’re an expecting parent. How much would you pay to have the peace of mind that your child will arrive healthy? Imagine you were an adult with a life-threatening disease. How much would you pay to receive a cure that required a genetic edit? The answer to these questions says a lot about how genetic engineering is likely to be adopted in the future.

Today, it is widely considered to be unconscionable to genetically modify humans. But I believe that within twenty years, we will see this view change dramatically, to a point where it will be considered unconscionable not to genetically modify people in many cases.

Genetic engineering is one of the highest potential areas of research today. I believe we should continue to invest it, and entrepreneurs should work hard to bring new products to market in this space. Yes, it has risks, and we must proceed with caution. But many new technologies have risks — even life-threatening ones — and we eventually are able to use them to greatly benefit the world. We shouldn’t let fear hold back progress on promising new areas of research.