Playing God

Earlier this month, scientists at Oregon Health Sciences University announced that they had successfully edited the DNA of a human embryo in order to remove the cause of a relatively common but extremely dangerous genetic disease.

The disease in question, hypertrophic cardiomyopathy, results in the abnormal thickening of the tissue in the heart. Caused by a mutation in the MYBPC3 gene, hypertrophic cardiomyopathy affects an estimated 1 in 500 people worldwide. Most of those afflicted show no symptoms until their heart unexpectedly stops. There is no way to prevent or cure hypertrophic cardiomyopathy, and it generally remains undetected in those carrying the mutant gene until they suddenly drop dead.

Using a tool called CRISPR (or Clustered Regularly Interspaced Short Palindromic Repeats, a type of molecular scissors that genetic engineers can use to selectively cut out and replace genes), the Portland-based research team was able to take embryos carrying the mutant MYBPC3 gene and correct the genetic defect. Had the embryos been implanted and allowed to develop to full term, the resulting children would have been cured of hypertrophic cardiomyopathy. More importantly, the cure would be permanent and would be transmissible. The researchers changed the very DNA of the embryos themselves, a process known as germ-line modification. Modifying the germ-line allows corrected or edited genes to passed on to subsequent generations of children.

This is not the first time that researchers have used CRISPR or similar tools to correct genetic defects in human embryos. In 2015, for example, a team at Sun Yat-sen University in Guangzhou, China, used a similar technique to selectively edit a gene called HBB, which encodes the human β-globin protein. Mutations in HBB gene are responsible for a disease known as β-thalassaemia. Individuals with β-thalassemia suffer from severe anemia, poor growth, and skeletal abnormalities. Left untreated, the disease eventually leads to death. Treatment requires frequent and lifelong blood transfusions, which causes a number of complications including iron overload (which can damage internal organs), splenomegaly requiring surgical removal of the spleen, and heart failure.

Unlike the more recent study, however, the Chinese scientists were only able to modify some of the cells in the embryo. Moreover, there were additional and unintended changes to the germ-line DNA, suggesting that the technique used by the those researchers was potentially unsafe. What makes the American study so exciting is it is the first time that researchers were able to modify embryos safely, efficiently, and precisely, making the prospect of CRISPR-based treatments for genetic disorders more science fact than science fiction.

Despite its great promise, this research is not without its critics. Although the two studies mentioned, and others like them, focus on the use of CRISPR to cure deadly genetic disorders, opponents of germ-line modification have raised concerns about the potential use for non-medical reasons. For instance, Marcy Darnovsky, Executive Director of the Center for Genetics and Society, publicly worries that this technology will soon lead to “designer babies”; fertility clinics in the US and elsewhere will be able to offer wealthy parents the option of engineering their children for particularly desirable traits such as athletic prowess, artistic talent, or high intelligence.

Such criticisms are not nothing new. When it first became possible to genetically modify organisms in the 1970’s, concern citizens worried that these scientific tools could be used to create new and deadly strains of anthrax, influenza, and smallpox (a fear capitalized on by Michael Creighton in his book The Andromeda Strain). So great was the public’s concern that, in February 1975, a group of 140 molecular biologists met at the Asilomar Conference Center in Monterey, California, to discuss ethical issues surrounding the use of recombinant DNA technology. Similar concerns and public debates have occurred following other scientific advances, including the development of artificial reproductive technologies like in vitro fertilization (IVF) and the sequencing of the human genome. Despite what critics think, even morally-problematic studies like those using embryonic stem cells or germ-line modification proceeds in a very controlled and thoughtful way.

Following publication of the Chinese study, CRISPR co-discoverer Jennifer Doudna organized a meeting of 18 renowned researchers, ethicists, theologians, and others to discuss the use of this technology for human germ-line modification. In a subsequent article entitled A Prudent Path Forward for Genomic Engineering and Germline Gene Modification, they called a moratorium on the use of CRISPR clinically until there was “broad societal consensus” about the use of this technology to treat severe and life-threatening diseases. However, they noted – as have many researchers and ethicists before and since – that concerns about designer babies are overblown. Unlike genetic disorders like hypertrophic cardiomyopathy and β-thalassaemia, traits like height, intelligence, and artistic ability are influenced by multiple genes. We don’t even understand how these genes interact to create musical aptitude or athletic prowess. We certainly don’t have the ability to selectively design the next Mozart or Michael Jordan, and we shouldn’t prevent research that may lead to new life-saving medical treatments out of an irrational fear of breeding a generation of uber-Mensch.

The fundamental concern that is commonly raised around new medical advances and scientific technologies like CRISPR is this: Should scientists play God? In fact, a recent Time/CNN poll found that a substantial majority (58%) of Americans believed that altering human genes is “against the will of God.” But this is the wrong question to ask. There is nothing inherently immoral with CRISPR. It is a tool and as such is morally neutral, like all tools. A gun can be used to kill or it can be used to defend. A chainsaw can be used to build or used to destroy. Likewise, CRISPR can be used to treat disease or to create designer babies. It is all in the intent. So the question is not about playing God, but playing a wise and benevolent God. There is nothing wrong with using our scientific knowledge and technical know how to alleviate human suffering, so long we do so prudently and thoughtfully.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on August 10, 2017, and is available on the WAMC website.]

Hard-Headed About Sports

Growing up, I was never a big football fan. I didn’t care to watch the NFL on television (not even the playoffs or the Super Bowl) and I rarely went to watch my high school team play on Friday nights (except for homecoming). This isn’t to say I wasn’t a sports aficionado, but I preferred more individually oriented sports like tennis, cross-country, and martial arts. In fact, it is only in the last five years or so that I have developed an interest in the game – largely as a result of marrying into a family of rabid Buffalo Bills supporters.

As a public health practitioner and bioethicist, however, I have a morbid fascination with football and other high-impact sports. This is because these sports – football, soccer, hockey, and boxing in particular – are increasingly linked with a condition known as chronic traumatic encephalopathy (CTE).

CTE is a progressive neurodegenerative disease characterized by impaired speech, deafness, amnesia, depression, anger, and dementia. It is commonly found in military veterans and others with a history of severe head trauma. We also now know that a significant percentage of amateur and professional athletes are likely to be suffering from CTE, largely as a result of the repeated concussions that are common in competitive sports.

Concussions – known clinically as mild traumatic brain injuries (MTBIs) – occur when a blow to the head or body, a fall, or some other impact causes the brain to smash into the skull. They are one of the most frequent brain injuries, occurring more than 1.5 million times a year in the United States; 100,000 of these annual injuries occur in football alone, usually at the professional, collegiate, and high school levels.

Depending on the severity of the blow, the symptoms of a concussion can range from a mild headache, blurred vision, and some disorientation to a loss of consciousness, convulsions, and transient amnesia. These symptoms usually subside in a few hours, but they can last for days or even weeks in cases of severe or repeated concussions. There is no real treatment for a concussion other than complete physical and cognitive rest.

The association between concussions, particularly repeated concussions, and long-term neurological damage is well established. One early study of men who had a history of repeated concussions found that 80 percent showed evidence of chronic traumatic encephalopathy or other neurological disorders; most of these men had played football in high school, college or professionally. More recently, in a study published this week in the Journal of the American Medical Association, researchers examining the brains of 202 deceased football players found that a startling 87 percent had CTE. Among professional athletes, over 99 percent were diagnosed the neurodegenerative disease; of the 111 NFL players enrolled in the study, only one did not have signs of CTE. Among former collegiate players, 91 percent were found to have CTE. Most worrisome, even among those who only played football in high school, nearly a quarter tested positive for that disease. Admittedly, this study looked at brains donated by the families of deceased athletes, many of whom may have suspected that their loved ones had chronic traumatic encephalopathy, so the actual rate of CTE among living athletes is still unknown.

This is in part because a definitive diagnosis of CTE can only be made after death. During autopsy, medical examiners look for a reduction in brain weight, along with characteristic atrophy (or shrinkage) of the frontal and temporal lobes. They also look for the accumulation of a protein called tau in the regions of the brain that control mood, cognition and motor function. Tau is one of the abnormal protein deposits found in the brains of people with Alzheimer’s disease, although the pattern of tau distribution is different from that seen in those with CTE.

Although CTE can only be confirmed by post-mortem neuropathological analysis, scientists at the University of California, Los Angeles (UCLA), have begun to adapt a technique used to assessing neurological changes associated with Alzheimer’s disease to look for CTE in living patients. This technology, which uses positron emission tomography (PET scans) to measure tau accumulation in the brain, is starting to give us a sense of just how widespread the problem is.

When the UCLA researchers used this technique to examine the brains of professional athletes, patients with Alzheimer’s, and healthy controls, they found that a significant percentage of athletes – even those without a clear history of repeated concussions – showed evidence of CTE. Athletes who had experienced more concussions had higher levels of tau accumulation. Compared with healthy people and those with Alzheimer’s, the former athletes had higher levels tau accumulation in the amygdala and subcortical regions of the brain, which are the areas that control learning, memory, behavior, emotions, and other mental and physical functions.

It is clear from these and other studies that concussion, and the long-term neurological damage that results from these traumatic brain injuries, is a serious problem in football and other high impact sports. Although professional leagues like the NFL have begun to put into place new rules designed to reduce the frequency of concussions among players, the risk to athletes at any level (professional, collegiate, high school, and even pee wee) remains great.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on July 27, 2017, and is available on the WAMC website.]

 

Paris is Burning

Earlier this month, President Trump finally honored one of his many (often contradictory) campaign promises. He formally withdrew the United States from the 2015 Paris Climate Accord. America is now one of only three countries in the world who are not party to this landmark agreement, joining Syria and Nicaragua in refusing to work collaboratively to combat the threat of global climate change.

Designed to slow and eventually reverse the release of greenhouse gases into the atmosphere, the Paris Agreement calls upon the 195 signatory nations to stabilize carbon emissions by 2030; while nearly 55 gigatonnes of carbon dioxide would still be released into the air every year, the near exponential increase in annual emissions would cease. The accord also calls for nations of the world to start reducing the overall amount of greenhouse gases in the atmosphere by 2050, offsetting anticipated emissions with compensatory sequestration and reforestation efforts. Should these ambitious goals be met, the estimated increase in the global average temperature would be limited to a manageable 1.5 – 2.0° Centigrade (2.7 – 3.6° Fahrenheit) above that of the pre-Industrial era.

Climate change is one of the most important yet, sadly, one of the most neglected problems that we face. According to the vast majority of climate scientists (over 97% of them, to be precise), mankind is irrevocably altering the environment as the result of industrial production and agricultural activity. One consequence is increasing global temperatures, but we can also expect to see changing rain and snowfall patterns, and more extreme weather events like heat waves, droughts, floods and blizzards over the coming years.

The health-related impact of climate change is most directly observed during extreme weather events, such as increased mortality among the elderly and those who work outdoors during heat waves. The crippling heat that gripped the Southwestern US last week, for example, was responsible for dozens of confirmed and hundreds suspected deaths. That heat wave was relatively tame. By contrast, almost 700 people died of heat-related causes during the 1995 heat wave in Chicago, nearly 5,000 died during the 2003 heat wave in Paris, and over 10,000 died during the 2010 heat wave in Moscow.

In fact, extreme heat kills ten times as many Americans as tornados, hurricanes, and earthquakes combined. A study published just last week found that more than 30 percent of the world’s population is already exposed to potentially deadly heat for two or more weeks per year. Should even the most conservative climate change projections prove accurate, by 2050 over half of the world’s population will be exposed to extreme heat. Come this century’s end, three in four people will be at risk of dying from heat.

This is only the health-related impact of excessive heat. There are also the injuries and loss of life associated with other extreme weather events, like floods, landslides, tornados, and hurricanes. There is the insidious climate-related spread of infectious diseases, particularly insect-borne diseases like Lyme disease, West Nile Virus, and the newly emergent Zika. The impact of global climate change on human health in the US has been limited to date, but we can expect to see increasing morbidity and mortality as such diseases become more frequent, heat waves more persistent, and other extreme weather events more common.

We should also consider the financial impact of climate change. Last week’s heat wave disrupted air travel across the US as flights out of Phoenix Sky Harbor Airport – a key regional hub for American Airlines – were grounded; smaller regional planes cannot takeoff when temperatures exceed 118° Fahrenheit, a result of thinning air and reduced aerodynamic lift. The economic impact of that disruption was relatively minor, however, compared to the billions or trillions of dollars that will be lost to reduced agricultural production, lower worker productivity, and damage and lost property from floods, landslides, and other weather-related disasters as the Earth warms.

This is a pretty grim picture, even given current hopes that the Paris Climate Accord would finally lead to concrete action on global warming. The question that remains unanswered is whether or not the Trump Administration has doomed those hopes and condemned the world to an apocalyptic future of runaway climatic change.

It is still unclear whether or not President Trump’s decision to withdraw the US from the Paris Agreement will have any effect on international efforts to combat global warming. It will certainly damage America’s international reputation. It will likely threaten the country’s competitiveness as the world transitions to a more efficient and environmentally-sustainable economic model. Thankfully, the federal government’s reluctance to abide by the voluntary goals of the Paris Agreement may not have any appreciable effect on efforts to reduce global carbon emissions.

The United States is currently the second largest producer of greenhouse gases globally, accounting for nearly 18% of annual emissions. Moreover, the emissions of other countries like China and India are partially driven by industrial production designed to serve the American market. Despite this, and despite Trump’s assertion that our country is hamstrung economically by environmental regulations like the Obama Administration’s Clean Power Plan, our per capita contribution to global carbon emissions has begun to decline.

These reductions are the result not of the federal regulations that Trump has repeatedly railed against, but rather a consequence state- and local-level laws, structural changes as we move to an information-based economy, and increasing awareness among the general populace. Contrary to claims that environmentally-friendly regulations hamper economic growth, those cities and states that have passed some of the most progressive laws have actually experienced some of the greatest returns as a result of improved efficiency and reduced waste.

Is the current Administration’s plan to ignore current international consensus on climate change misguided? Definitely. Should we be dismayed that our elected leaders are sacrificing the long-term economic stability and health of our country (and the planet) for short-term financial gains? Absolutely. But hope for a better future for ourselves and our children is not lost, and each of us can contribute to the fight by making changes at home, being greener in the office, and reducing our carbon footprint when we travel for work and for pleasure. Since our elected politicians refuse to show leadership on this matter, it’s time that we concerned citizens take charge … at least until the 2018 midterm elections roll around.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 29, 2017, and is available on the WAMC website.]

Remembering the 49+

This past Monday represented the one-year anniversary of the Pulse nightclub massacre in Orlando, Florida. Forty-nine people died and 53 were injured in what was the worst mass shooting in modern US history. The victims’ only crime was that they were members or supporters of the lesbian, gay, bisexual and transgender (LGBT) community. They were singled out and murdered by a lone gunman motivated by homophobia and hatred.

Unfortunately, reports of gun violence and mass shootings are becoming increasingly routinized in the United States. As I write this commentary, politicians in our nation’s capital are still reeling from yesterday’s brazen attack on GOP Congressmen and staffers practicing for a charity baseball game. That was the 152^nd such mass shooting this year; a similar yet more deadly attack occurred at a UPS facility in San Francisco the very same day.

Republican and Democratic leaders, like the American electorate they represent, are as sharply divided as ever in their response to gun violence. Although they are united in their condemnation of yesterday’s assassination attempt, they disagree about whether or not stricter or looser gun control laws are the answer. Moreover, although both sides of the Congressional aisle agree that increasingly vitriolic partisan rhetoric of the past few years is partially to blame for the increase in politically motivated violence, they seem inclined to pay it lip service rather than change the rancorous tone in Washington, DC (at least if the news shows that I watched this morning are any indication).

That is a shame. I do believe that increasingly bitter political divide in this country is largely responsible for much of the violence (physical, verbal or otherwise) that has become commonplace in America. When we, as a society, ignore and even reward calls and acts of violence by our leaders – be they jokes about shooting reporters or political adversaries, hate-filled speeches on the campaign train, legislation that stigmatizes or discriminates against minorities, or the physical assault of a professional journalist on the eve of election day – we endorse it as an acceptable political tactic. That endorsement further bleeds over into everyday life, and we begin to ignore, permit, and even participate in violent acts against the most vulnerable among us.

Don’t believe me? Consider what has happened in the 368 days since the Pulse nightclub shooting.

Hours after that shooting occurred, Republican and Democratic politicians alike took to popular and social media to express their condolences. It is important to note, however, that many of these same politicians have demonized members of the LGBT community in a cynical attempt to gain or retain their elected positions. The former Governor of Arkansas, Mike Huckabee, who offered his prayers for the victims on Twitter, has also said that homosexuality is a “lifestyle,” that transgendered individuals are perverts and pedophiles, that legalizing same-sex marriage is analogous to legalizing incest, and that those living with HIV/AIDS should be quarantined to keep them away from good, decent Christian folk.

Texas Governor Greg Abbott, who flew the Florida flag from the Governor’s Mansion in an act of solidarity with Orlando’s victims, has called for a special session of that state’s legislature to push a law restricting the rights of transgender people to use public restrooms.

Then-Governor of Indiana Mike Pence, currently the Vice President of the United States, spoke publicly to “express [his] deepest sympathies, and prayers, especially to those in the LGBT community in the Orlando area, for the loss of loved ones, family members and friends in the midst of this horrific, horrific attack.” At the time, Pence had also recently signed the controversial Religious Freedom Restoration Act, which allowed Indianans to discriminate against LGBT individuals on the basis of ill-defined religious beliefs. As a member of the Trump Administration, he is similarly pushing for national legislation that would legalize discrimination as a matter of religious faith.

All of this hypocrisy and hate has had an effect. Despite all of the advances that the LGBT community has made in the last few decades – from increased public visibility and acceptance to the legalization of same-sex marriage – violence against sexual and gender minorities has increased. According to a recent report by the National Coalition of Anti-Violence Programs (NCAVP), 2016 was the deadliest year on record for violence against LGBT people in the United States. In addition to the 49 victims of the Pulse nightclub massacre, another 28 individuals were killed in targeted hate crimes last year. Of the victims, 79% were people of color and 68% were transgender.

Even if we exclude the Orlando victims from our analysis, hate crimes and murders against members of the LGBT community increased by nearly 20% between 2015 and 2016. Worse yet, we are on track to meet or exceed that shameful record this year. Although we are not even half way through 2017, an additional 21 people have been murdered to date as a result of anti-LGBT violence. Such violence and hate against members of the LGBT community is persistent, occurring in their homes, schools, workplaces, and communities. Online and mobile harassment has increased, up 13% in 2016.

Although correlation is not causation, it is easy to see the links between this increase in violence and the current political climate. When cynical, insecure, or outright homophobic politicians in both parties push or support legislation to roll back or limit the rights and protections of this vulnerable community, it legitimizes anti-LGBT violence in the eyes of their more extreme supporters. Furthermore, it normalizes stigmatization, discrimination, and even violence as an acceptable form of political discourse and debate.

If politicians really want to combat violence triggered by what one Congressman called ‘political rhetorical terrorism,’ they need to stop pointing fingers their opponents, journalists, or social media. They need to point their finger at the mirror. “Do as I say, not as I do” will not solve this problem. It’s time to move on from the rancorous politics of the 2016 election and work together to solve the myriad of political, economic, and social challenges that face this country.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on June 15, 2017, and is available on the WAMC website.]

Silence = Death

As Donald Trump fights for his political life following new revelations about wholly inappropriate disclosure of classified materials and potential obstruction of justice, he has quietly issued new orders that will condemn thousands of women and children around the world to death.

Largely overlooked given the media frenzy about the appointment of a special prosecutor to investigate Russian interference in the US Presidential election was an announcement that the Trump Administration will vastly expand the scope of the “Global Gag Rule”, the international anti-abortion policy first enacted by Ronald Reagan in 1984.

Also known as the Mexico City Policy, the rule prohibits organizations that receive family planning money from the United States Agency for International Development (USAID) from providing or promoting abortion. This is true even if they do so with private money. In fact, if they take so much as a single dollar from the US, they can’t even mention the word ‘abortion’ regardless of whether or not these organizations actually provide such services.

Every time a Democrat is in the White House, the global gag rule is rescinded. Every time a Republican enters the Oval Office, it is reinstated. President Trump himself did so just three days after assuming office. Until now, family planning organizations around the world have largely learned to deal with this ebb-and-flow. That is all about to change.

On Monday, Trump announced a new policy called Protecting Life in Global Health Assistance. That policy expands the scope of the Global Gag Rule. The restrictions of the Mexico City Policy now apply to nearly $9 billion in global health funding provided annually by federal agencies like the State Department and the Department of Defense, in addition to the $600 million in family planning support that is provided by USAID.

By denying funds to family planning clinics that provide information or referrals for abortions – be it in countries where the procedure is legal upon request, in cases of rape and incest, when the fetus is impaired, or when the life of the mother is placed at risk – the Global Gag Rule already leaves millions of poor women without access to reproductive health and family planning services. Without these services, which include low- or no-cost contraceptives, millions of women in the developing world will experience pregnancies that they neither want nor can afford. In fact, a study of nearly two-dozen countries in sub-Saharan Africa found that access to contraceptives dropped, unintended pregnancies increased, and abortions (both legal and illegal) doubled in these countries during the years when the Mexico City Policy was in effect.

Even in countries where selective termination of pregnancy is legal, the cost of obtaining a safe and sanitary abortion means that these procedures are out of the reach of many women. Instead, women seek abortions in illegal back-alley clinics where hygiene and post-operative care are an afterthought. Over 20 million unsafe abortions are performed every year, and the women who undergo them often experience severe complications that leave them infertile, crippled or dead. Unsafe abortion accounts for 13 percent of maternal deaths worldwide, causing nearly 50,000 preventable deaths per year.

Many more of these unwanted or ill-timed pregnancies will be carried to term, but with potentially disastrous physical and economic consequences for women and their families. Pregnancy-related complications are a leading cause of death and disability in developing countries, particularly in those nations where women lack access to family planning programs. Half-a-million women die in childbirth every year. Fifteen million more experience severe complications that leave them physically disabled, their children dead, and their families reeling from the economic costs associated with care and treatment.

Trump’s Protecting Life in Global Health Assistance policy will make that already tragic situation worse. By expanding the Global Gag Rule to every clinic that receives US aid, healthcare providers who work to treat or prevent infectious diseases like HIV or Zika virus will also be affected.

Consider the recent outbreak of Zika viral disease in the Western Hemisphere. Spread by mosquitoes or by sex, Zika generally causes a mild illness. Most people experience a few days of fever, headache, and joint and muscle pain. However, if a woman is pregnant at the time she is infected she is at increased risk of having a child born with a rare birth defect known as microcephaly (a condition in which an infant is born with a smaller-than-usual brain). During the last outbreak in Brazil, nearly a third of women infected with Zika during pregnancy had babies with brain-related birth defects, including but not limited to microcephaly.

There is no treatment for either Zika or microcephaly. Moreover, although some children born with microcephaly develop normally, most will experience lifelong symptoms that include developmental delays and disabilities, difficulties with coordination and movement, hyperactivity, and seizures. Thus, the only option for women in Zika-affected regions of the world is to avoid getting pregnant or to consider selective termination should prenatal testing suggest severe birth defects.

Thus the Catch-22 created by the new policy. In order to receive the foreign aid needed to combat Zika, these clinics will have to forgo any discussion of the potential consequences of microcephaly. The amount of money available for family planning services will also drop as organizations like the International Planned Parenthood Federation (IPPF) find their funding cut, despite the important role of contraceptives in preventing Zika-related complications. This will mean more pregnancies, more abortions, more maternal deaths, and more children born with severe birth defects.

Donald Trump, like so many of his Republican predecessors, claims to be a “pro-life President,” but his reinstatement and expansion of the Global Gag Rule shows that he is anything but.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 18, 2017, and is available on the WAMC website.]

She Ain’t Hefty™, She’s My Mother

Late last week, my social media feed was flooded with videos showing a fetal lamb kicking and squirming inside a large liquid-filled bag. Thankfully, it wasn’t some obscene animal torture video. Rather it was a news article about a recent development in medical technology: the first successful demonstration of an artificial womb.

Developed by researchers at the Children’s Hospital of Philadelphia, the artificial womb is known (descriptively enough) as a Biobag. It is essentially a large Ziploc™ bag that encloses the fetus and bathes it in a protective solution similar to the amniotic fluid inside the uterus. An external tube is used to pump oxygenated blood and nutrients to the growing fetus, replacing the placenta that would normally connect the mother to the unborn child.

So far the Biobag has only been used in the laboratory. To date, eight lambs have been delivered prematurely and then allowed to complete their gestational development in an artificial womb-like environment. All of the lambs developed normally, and researchers hope that Biobag-like technology can soon be used in the clinic to provide care and treatment for premature infants.

Premature birth is the leading cause of death in newborn infants. About 10 percent of all births globally are premature, with the infant born before 37 weeks of pregnancy. Annually, more than 15 million children worldwide are born prematurely. A great many of these children will die from preterm-related ailments, despite receiving intensive support and care (where available). Of those that survive, most will suffer from lifelong disabilities, including vision and hearing problems, developmental delays, and cerebral palsy.

The earlier a child is born, the more likely they will die or suffer long-term health problems because their organs have not had the chance to develop fully. Artificial wombs like the Biobag could solve that by allowing premature infants to continue developing in a uterus-like environment until their organs have fully matured.

Despite the potentially miraculous advance in treating prematurity that the Biobag represents, when the fetal sheep video went viral there were a lot of comments condemning the research (and not just from activists opposed to the use of animals in laboratory experiments). Much of the criticism that I read online made overt or oblique reference to Aldous Huxley’s novel Brave New World.

Written in 1931 as a parody of the escapist utopian fiction that was popular during the Great Depression, Huxley’s book envisioned a society rigidly stratified into biological castes, with members of each caste genetically engineered and raised in artificial wombs. From the intelligent and handsome Alphas who rule to the stunted but strong Epsilons who do menial tasks, each is biologically and psychologically conditioned to happily fulfill the social roles into which they are born. Only so-called ‘Savages’ are conceived and born the natural way, and they are relegated to living outside society on isolated reservations.

So are we one step closer to Huxley’s dystopia as these critics claim? Will the well-heeled elites soon be able to place an order for a child with the good looks of Heidi Klum, athletic prowess of LeBron James, and the musical genius of Lady Gaga, decanting her from an artificial womb in time to fly off to the Bahamas for the 10^th annual Fyre Festival? Is the Biobag, as one online critic so ineloquently and inaccurately decried, the “evil tool of Satan-worshipping atheists”?

Quite frankly, these arguments and criticisms are absurd. It is true that scientists are developing new technologies that may soon make it possible to gestate an infant outside of the womb; the Biobag is proof of that. It is also true that researchers have invented new tools that enable us to correct genetically inherited defects in utero; a newly developed technique called mitochondrial replacement therapy can be used to prevent the transmission of certain diseases through germ-line gene replacement. But to call these technologies “evil” or to imply that they will be used to create a race of Nietzschean Übermensch is overly fallacious.

First and foremost, new technologies like the Biobag are not “evil.” Like all tools – from a chainsaw to an atomic bomb – an artificial womb is ethically neutral. A chainsaw can be used for good (like trimming the branches from a tree before they fall and damage your roof) or can be used for evil (like dismembering your neighbor because they painted their house an ugly color). The moral issue that arises is not with the tool or technologies themselves but with how they are used.

Second, most of the criticisms of the Biobag – that it will be used to grow humans from embryos, that employers will require women to use artificial wombs to avoid paid maternity leave – rely heavily on so-called “slippery slope” arguments.

A common rhetorical device used in debates, a slippery slope argument is an attempt to dissuade a particular course of action because it will lead to some unacceptable conclusion. We should not legalize physician aid-in-dying, for example, because it will lead to doctors euthanizing the sick, disabled, or elderly. Similarly, we should not develop an artificial womb because it will allow us to create designer babies.

But this sort of reasoning is fallacious. There is no reason to believe that one event must inevitably follow from another. We should not assume, for instance, that an artificial womb created to treat prematurity would be used for anything other than that. Moreover, just like we criminalize the use of a chainsaw to harm others, we can create laws and policies to prevent socially unacceptable uses of a morally neutral technology like the Biobag.

Despite what the critics say, it is absurd to think that plastic bags will soon replace natural mothers. What the Biobag offers is hope to the families of children born prematurely, rather than the bleak future that Huxley envisioned.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on May 4, 2017, and is available on the WAMC website.]

Penny-Foolish

The 2018 federal budget battle has barely begun and already critics – including myself – are questioning the wisdom of Trump’s proposal to drastically cut key agencies like the US Department of State, Health and Human Services, and the Environmental Protection Agency in order to build a wall that no one wants, to buy fighter jets that no one needs, and to give tax breaks that no one earned.

The Trump Administration claims that the President’s proposal will make Americans safer, healthier, and wealthier, but the unprecedented cuts and reallocations in this budget are likely to make us poorer, sicker, and endangered. They are also likely to do irreparable harm to America’s image overseas. Although Ronald Reagan famously described America as “a shining city upon a hill whose beacon light guides freedom-loving people everywhere,” we will soon be seen as the exact opposite as the very programs that save lives, promote equality, combat poverty, and advance human rights – the very values and ideals that Americans cherish – are dismantled.

Consider, for example, Trump’s plan to cut funding from a program that provides life-saving treatment to those living with HIV/AIDS across the globe. Known as the President’s Emergency Plan for AIDS Relief (PEPFAR), that program was created in 2003 by then President George W. Bush. It would not be hyperbole to describe PEPFAR as President Bush’s greatest legacy, redeeming an otherwise disastrous administration best known for embroiling America in an unjust and seemingly unending war in the Middle East and for triggering the worst financial disaster since the Great Depression.

PEPFAR was created at a time when over 30 million people globally were living with HIV/AIDS. As it still true today, most of those people lived in the developing world where access to treatment and care for HIV was unavailable, unattainable, or simply too expensive to buy. Of the 20 million in sub-Saharan Africa who were living with AIDS at the time, less than 50,000 of those had access to antiretroviral drugs to manage the disease and prevent its spread.

PEPFAR changed all that. The program now provides antiretroviral treatment for over 11.5 million people living with HIV/AIDS, at an individual cost of less than $0.40 per day. Not only do these drugs extend the lives of those living with HIV, it also reduces the likelihood that they will transmit the disease to others. As a result, the rate of new infections has dropped by two-thirds or more in many African countries.

PEPFAR has also provided HIV testing and counseling to hundreds of millions of people, including over 10 million pregnant women. In doing so, by identifying HIV-positive women and getting them on treatment, it has prevented nearly two million babies from being born with HIV.

This program has been so effective that death rates have actually dropped in many African countries; one study found that adults overall were 16 percent less likely to die simply by living in a country that had a PEPFAR-funded program. Despite this, the Trump administration wants to cut PEPFAR funding by almost $300 million, reducing the number of newly infected patients put on antiretroviral treatment and eliminating many of PEPFAR’s existing HIV prevention programs. We will thus condemn tens of thousands of people to die of HIV/AIDS, but at least we will save enough money to buy approximately three F-22 fighter jets.

President Trump has also cut all funding to the United Nations Population Fund (UNFPA), which provides reproductive health care and family planning services to women in more than 150 countries. This is not the first time that a Republican-run administration has cut the UNFPA’s funding. Upon taking office in 2001, President Bush similarly withheld funding by citing the Kemp-Kasten Amendment, a 1985 policy that prohibits giving money to organizations involved in abortion or involuntary sterilization. Because UNFPA works with China’s national family planning agency, critics argue, it supports that country’s coercive population control laws.

The Kemp-Kasten Amendment was specifically adopted in response to China’s “One Child Policy,” which called for Chinese couples to have only one child each in order to curb that country’s surging population; according to some reports, Chinese officials sometimes enforced the policy through involuntary sterilization or abortion. However, the “One Child Policy” was rescinded in 2015 and there is no evidence that the UNFPA worked with Chinese officials to enact the policy. In fact, the situation is the exact opposite: the UNFPA only works in regions of China where local governments have agreed to eliminate birth targets and quotas.

Trump’s claims about the UNFPA are thus as erroneous as the GOP’s allegations against Planned Parenthood, and will likely be as deadly. According to the United Nations, in 2016 the US provided $32 million to support UNFPA programs. This money was used to save 2,500 women from dying during childbirth, and prevented nearly a million unintended pregnancies and 300,000 unsafe abortions. By cancelling our 2017 contribution to the United Nations Population Fund we will save enough money to pay for six months’ worth of Trump outings to his Mar-a-Largo estate, but sentence thousands of families to a life of abject misery and poverty. Moreover, the pro-life values used to justify this decision will result in more rather than fewer abortions.

My late grandmother was very fond of using the cliché “penny-wise and pound-foolish” to describe those who worry about little expenses while over looking large expenditures. I only wish that that were the case here. Rather, the Trump Administration is being penny-foolish, cutting the very programs that give the US its best return on investment. Through the sheer number of lives saved and families helped, programs like PEPFAR and UNFPA embody the very values and ideals that Americans cherish. To cut them now in order to fund the expansion of the US military does little more than tarnish the shining city’s walls and dim its beacon light.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on April 6, 2017, and is available on the WAMC website.]

The First Cut is the Deepest

Last week, President Trump publicly unveiled his 2018 budget proposal. If left unchanged, that financial blueprint would increase US federal defense spending by more than $50 billion, while also appropriating billions more to bolster immigration enforcement and build a 2,000 mile-long wall along the US border with Mexico. A self-proclaimed deficit hawk, the President would offset those increased expenditures will sharp cuts to the US Departments of State, Energy, Health and Human Services, and the US Environmental Protection Agency.

In sharp contrast to campaign trail promises to boost the economy, create jobs, and protect Americans at home and abroad, however, Trump’s 2018 budget is likely to do the exact opposite. Consider, for example, the proposal to cut nearly $6 billion from the US National Institutes of Health (NIH).

Made up of 27 different institutions and centers, the NIH is the largest supporter of biomedical research in the world. Through the NIH or other funding agencies, the federal government supports almost half of all the biomedical research in the US. Private businesses support another quarter, and the remainder of biomedical research support comes from state governments and nonprofit organizations.

With an annual operating budget of $30 billion, the NIH provides training and support to thousands of scientists at its main campus in Bethesda, Maryland. Moreover, through a system of extramural grants and cooperative agreements, the NIH provides financial support for research-related programs to over 2,600 institutions around the country, creating more than 300,000 full- and part-time jobs.

Given this, the cuts proposed in the 2018 budget are devastating. Coupled with inflation and the costs of supporting current activities and the activities of the Agency for Healthcare Research and Quality – a $350 million agency whose activities the NIH is expected to absorb this year – a $6 billion reduction would essentially eliminate all new extramural funding programs for 2018. The impact on American science and research, not to mention the US economy, is catastrophic.

The money that the NIH provides to academic institutions through extramural funding and collaborative partnerships does more than pay the salaries of the nation’s top scientists. In order to support studies designed to develop new treatments for diseases like cancer, Alzheimer’s, Parkinson’s, and HIV/AIDS, these researchers also spend billions of dollars to purchase equipment, services, and supplies for local companies. In one analysis that looked at nine Midwestern institutions that receive about $7 billion annually from the NIH, the National Science Foundation, and other funding agencies, economists found that those universities, in turn, spent over $1 billion yearly buying goods and services from various US vendors and subcontractors.

Finally, the NIH is a net generator of jobs and income for the US. The basic research that the NIH and similar federal funding agencies support through extramural grants is used by private biotechnology, chemical, computer, electronic, nanotechnology, pharmaceutical companies, among others, to develop the new technologies and create the new products that have made the US a global leader in science and engineering. In fact, one economic study found that for every $1 spent on NIH-supported projects, there is an estimated return of nearly $2.20 to the US economy.

Admittedly, as a public health researcher, I am a little biased in this regard. For much of my career, my research has been supported in part or in full by federal grants. I also currently direct two federally funded research ethics training programs that face an uncertain future. Those projects are supported by multi-million dollar grants from the Fogarty International Center, the smallest of the NIH’s 27 component parts.

Operating with a minuscule $70 million annual budget, less than half of what the US taxpayer will spend this year on travel and security for Trump’s weekend golf outings at Mar Largo, Fogarty supports a number of collaborative training programs and research partnerships between US and international institutions. Trump plans to eliminate the Fogarty International Center entirely, most likely because the international focus of the Center’s projects – and the fact that US tax dollars are being spent overseas – has drawn the ire of nationalists in his administration.

But this ire is misplaced. Fogarty’s programs and research partnerships are designed to combat global health threats like Ebola, HIV/AIDS, malaria, and Zika virus, the very diseases that increasingly threaten American shores. Ending five decades of US leadership in the area of global health at a time when our nation faces an increasing number of new and remerging disease threats is thus horribly shortsighted. The border wall might prevent undocumented workers from slipping into Texas, but it won’t prevent a Zika-infected mosquito from crossing the Rio Grande.

Hopefully, our leaders in Congress are not so myopic as those in the Trump Administration. Even though our leaders in Washington have often seemed to ignore science when it suited them – denying the existence of anthropogenic climate change or funding abstinence-only sex education – the NIH has often had bipartisan support. Slashing the budget of that organization will not only result in a net loss of jobs, it will set back scientific research for decades, threaten the nation’s status as the world leader in science and technology, and put us all at risk should there be an outbreak of infectious disease somewhere in the world. It is hard to see how that meets anyone’s definition of “making America great again”!

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 23, 2017, and is available on the WAMC website.]

The Problem with Binary

Throughout his raucous 2016 campaign, President Trump repeatedly claimed that he would be an ardent defender of the lesbian, gay, bisexual and transgender (LGBT) community. During the Republican National Convention, for instance, he proclaimed that “as your president I will do everything in my power to protect LGBTQ citizens.” Despite this statement (which stood in stark contrast to the Republican Party’s virulently anti-LGBT political platform), and diverging from the public comments and actions when he was still a private citizen, since gaining the nomination and later the presidency, Donald Trump has largely kowtowed to the more homophobic wings of his party.

Although he has yet to repeal an Obama-era order protecting LGBT federal employees from workplace discrimination, for example, he has repeatedly expressed support for the First Amendment Defense Act. Modeled on the anti-LGBT legislation passed in Indiana when Vice-President Pence was governor of the Hoosier State, that Act would allow individuals, businesses, and healthcare providers to deny services to LGBT individuals based on their religious beliefs.

More recently, in spite of prior comments that “people should use the bathroom that they feel is appropriate,” Trump rescinded existing protections for transgender students. Previously, the federal government had issued guidelines that, while not legally binding, required public schools to allow transgender students to use bathrooms that corresponded with their gender identity rather than biological sex. Under the Obama administration, the Departments of Justice and Education had taken the position that existing regulations like Title IX, the federal law that prohibits sex discrimination in schools, also applied to discrimination based on gender identity. That is no longer the case.

By taking these positions publicly, the Trump administration has emboldened anti-LGBT advocates and led conservative lawmakers to push for increasingly restrictive regulations. Just this week, prompted by the federal government’s reversal on transgender rights, the Supreme Court announced that it would not hear the case of Gavin Grimm, a transgender boy from Virginia who is banned from using the men’s room at his local high school. That case has been sent back to the lower courts, which had previously ruled in Mr. Grimm’s favor. Legislators in that state have also introduced a bill that would block transgender people from using the public restrooms of their choice.

Conservative lawmakers in other states have also followed suit, drafting legislation similar to North Carolina’s controversial HB2 bill. That law not only invalidated local ordinances designed to protect LGBT individuals from discriminatio but also required individuals to use restrooms and changing facilities that correspond to the sex on their birth certificates rather than their gender identity. All told, these so-called “bathroom bills” have been introduced in 14 states since the start of the 2017 legislative session, including Illinois, Kentucky, Minnesota, New York, Tennessee, Texas, Virginia, and Washington. Proponents of these bills argue that they are about public safety; these bills are needed to prevent sexual predators from gaining access to women’s bathrooms and locker rooms. This claim, however, is not supported current crime statistics.

Not all of these bills will pass but many are likely to, particularly in more conservative states like Kentucky, Tennessee, and Texas. Consider the pending Texas law: Senate Bill 6. That law, which got its first legislative hearing yesterday, would require school districts and other state entities to limit access to public restrooms and changing facilities based on an individual’s “biological sex.” Biological sex, as defined in the statute, is the condition of being male or female as stated on a person’s birth certificate.

Now consider the controversy surrounding one of Texas’ high school wrestling stars: Mack Beggs. Last week, Mr. Beggs won the state championship in the 110-pound class. But he did so in the girls’ competition, handily beating Chelsea Sanchez for the win. Mack is transgender and identifies as male. Although Mr. Beggs would prefer to wrestle the other boys in the state, he is not allowed to because existing rules in Texas require that an athlete compete according to their birth sex rather than gender identity.

Moreover, for the past two years, Mack has been taking testosterone as part of his hormone therapy, giving him a more ‘male’ pattern of physical development. This includes greater muscle mass compared to women of a similar age, raising questions whether or not he had an unfair advantage over his female opponents. It also raises a real concern about safety, rather than the red herring argument used by bathroom bill supporters.

Controversies like these highlight the problem with these so-called bathroom bills. By trying to force people to meet a binary definition of sex, rather than recognizing the fluidity of gender identity, we end up creating more problems than we solve. If anything, these bathroom bills and other anti-transgender policies are little more than bigoted answers to questions that don’t exist.

As the visibility of this community increases – through the public activism of celebrities like Laverne Cox and the private courage of kids like Mack Beggs – our society is going to have to address the issue of transgender rights head-on. Cautious estimates put the number of transgendered Americans upwards of 1.4 million individuals. That’s a large number of people, and they are our coworkers, neighbors, friends, and relatives. They deserve respect and recognition of their humanity, despite what opportunistic politicians like Trump and Pence might think.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on March 9, 2017, and is available on the WAMC website.]

Drop the Kleenex and Put Your Hands Up!

For the past week, mainstream, alternative, and social media outlets here in the United States and abroad have been consumed with discussion and debate about the legality and morality of President Trump’s recent travel ban. However, the so-called Muslim travel ban is not the only set of potentially controversial restrictions put into place recently.

Unbeknownst to most, the federal government is also planning to expand greatly the power of the US Centers for Disease Control and Prevention (CDC) to detain people who are suspected of carrying a dangerous communicable illness. Also known as quarantine – a term that comes from the Italian word for forty, in honor of the practice in Early Renaissance Venice to make trading vessels remain anchored offshore for 40 days before entering the port – the detention, isolation and even forcible treatment of those potentially exposed to a infectious disease like tuberculosis or Ebola is one of the most powerful and one of the most contentious tools in the public health arsenal.

The authority of local, state, and federal officials to do this comes from the parens patriae powers of the state. Latin for “parent of the nation,” parens patriae refers to the legal doctrine that the government has a responsibility to protect those who cannot care for themselves. This includes, for example, the power of the state to intervene against an abusive or negligent parent. More broadly, it also encompasses the government’s responsibility to protect the health and welfare of the general population, which is accomplished through public health policies and practices like food safety inspections, fluoridation and chlorination of municipal water supplies, immunization programs and requirements, and the use of isolation and quarantine to prevent the spread of disease.

The decision to quarantine a person is not something to be taken lightly. Doing so places restrictions on an individual’s civil rights, including their right of movement and their right of assembly. They may also experience significant economic, psychological, social, and even physical injuries as a result of being quarantined.

Thus, quarantine can be justified only if it is absolutely necessary to protect others. To put it another way, the forcible detention of someone believed to be infected with a dangerous infectious disease is ethically and legally defensible only if it meets the standards of the harm principle, as originally articulated by philosopher John Stuart Mill. In his classic work On Liberty, Mill argued that “the only purpose for which power can be rightfully exercised over any member of a civilized community against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant.”

Most public health ethicists and lawyers argue that the use of quarantine must not only meet the harm principle, but it must also be proportional to the danger faced and be transparent in its application. For example, you wouldn’t quarantine someone with a disease that cannot be spread from person to person. Similarly, quarantine might be made voluntary rather than compulsory. It is also expected that public health authorities clearly communicate the reason for the quarantine order and allow for a process of appeal.

This is why the expanded powers of the CDC, should they be enacted, raise considerable concern.

Currently, the CDC is limited to detaining those who are entering the country or crossing state lines unless they get approval from local and state officials. The agency is also limited to quarantining people exposed to a handful of deadly and highly infectious diseases, such as cholera, tuberculosis, and plague.

Under the new regulations, however, CDC officials will be able to detain anyone in the country who is exhibiting signs that they are infected with a potentially dangerous disease, such as a high fever, headache, or cramps. Of course, these symptoms are pretty indiscriminate; a person with a fever of 104°F may be infected with Ebola or they may just have a bad case of the flu. The proposed rules will also allow the CDC to detain someone for up to 72 hours before their case is subject to medical and legal review. That review will be conducted by CDC officials themselves, raising concerns about transparency, objectivity, and due process.

It should thus come as no surprise that many public health practitioners and health policy experts are concerned about these newly proposed quarantine regulations. Not only are they worried about the lack of legal safeguards and the potential for abuse by overly zealous officials, most believe that the expansion of the CDC’s quarantine powers may actually elevate the threat of epidemic disease. People who are experiencing clinical signs of a dangerous illness, for example, may choose to hide their symptoms from public health authorities rather than run the risk of being detained.

Quarantine is a very potent weapon in the fight against infectious disease, but the decision to deploy this “nuclear option” should be done carefully and judiciously. Individual civil liberties must be protected even during a public health crisis. But as we saw during the 2014 Ebola outbreak, when public figures like Donald Trump and Chris Christie called for a blanket quarantine of those returning from West Africa despite the lack of an evidence-based reason to do so, government officials are far too quick to pull this trigger.

Giving the CDC greater authority and power to detain people on public health grounds will do little to prevent new outbreaks of infectious disease in the US, but it will further chip away at our already eroded civil liberties and rights.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on February 9, 2017, and is available on the WAMC website.]