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Good reads curated by Max
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Welcome to the Weekend Reader. This is my weekly curated guide to articles worth reading and ideas worth considering. I synthesize, summarize and share a handful of stories on one theme a week.  If you got this from a friend or from me, you can subscribe here

Last week's edition profiled the personalities and styles of some of Asia's larger than life leaders - like Xi Jinping's radical censorship in China, Singapore founder Lee Kuan Yew's bare-knuckled statesmenship, and a brilliant article on Japan's greatest sumo champion ever  (who happens to be Mongolian). If you missed it you can read it here.
this week:

The Germ Line: Editing Humanity

"It does seem as if the more one gets the more one wants” 
― Louisa May AlcottLittle Women

INTRODUCTION
 
Dear Friends,
A month ago, I wrote a newsletter on "Hacking Your Health" that many of you wrote me about because you appreciated the articles on South Korean plastic surgery, NFL brain injuries, and the rise of "biohacking." This week, Chinese researchers took biohacking to a new level. For the first time in history, researchers genetically modified human embryos. This isn't necessarily something to celebrate. In fact we should be wary, as were the editors of the journals Science and Nature, which both rejected the opportunity to publish this revoluntionary work. 

Researchers, led by Junjiu Huang, a gene-function researcher at Sun Yat-sen University in Guangzhou obtained 86 "non-viable" embryos from an IVF fertility clinic and attempted to edit and replace part of each embryos DNA.  "The team injected 86 embryos and 71 survived, of which 54 were genetically tested. This revealed that just 28 were successfully spliced, and that only a fraction of those contained the replacement genetic material. Analysis also revealed a number of 'off-target' mutations assumed to be caused by the technique acting in other areas of the genome." No one knows what would result from these "off-target mutations." That's partly what has a lot of people concerned.

In today's reader, I want to introduce you to the technology that's enabling genetic engineering of humans to go from "one of those things to be concerned with in the distant future" to "something we better figure out how to deal with now." The first article from the MIT Technology review profiles this new gene splicing technology. This is a must-read. More important than the technology itself is what we choose to do with it and what we allow it to do to us. The article explores this as well. The danger, as we are seeing now, is that technology is advancing and evolving at a faster clip than our moral imagination. That's why a lot of people are calling for a moratorium on any further experimentation with humans until we can figure out what we think is right. So lets get moving on stopping and reflecting. To the philosophers, pastors, priests, rabbis, and imams: now is the time for leadership. We need you to engage deeply and thoughtfully in these questions.

And dear readers, we need to resist the temptation to read these articles too casually. Let's not leave 
the difficult questions to the "experts," be they scientists or be they theologians. Too much is at stake to outsource our judgment. This is a question every person should wrestle with and have a say in answering: What does it mean to be human?

Read widely, read wisely.
Max
IN THIS EDITION
  1. Engineering the Perfect Baby MUST READ
  2. This New Gene-Editing Technique Is About to Be Very Controversial
  3. Scientists Seek Ban on Method of Editing the Human Genome
  4. Let’s Hit ‘Pause’ Before Altering Humankind
  5. Human genetic engineering demands more than a moratorium
1. The Promise of CRISPR Technology

George Church at Harvard Medical School likes to say that his lab is "the center of a new technological genesis—one in which man rebuilds creation to suit himself." Church's confident and neo-religious branding isn't just the result of his last name. It's based in no small part on his lab's use of a radically simple new technology for targeting and replacing DNA, called CRISPR-Cas9. Today labs around the world are working on "gene therapy" to treat diseases like sickle cell anemia or Parkinson's. CRISPR gives scientists a precise, inexpensive and easy to use tool for experimenting like never before.

With CRISPR, scientists can edit not only adult somatic cells but also "germ line" cells. Germ line cells are the hereditary ones, in the embryo itself. They are the ones that pass on your grandfather's propensity to baldness and other good things. Church is enthusiastic about editing the human germ line because "it could be possible to eliminate disease genes and to pass those genetic fixes on to future generations. Such a technology could be used to rid families of scourges like cystic fibrosis. It might also be possible to install genes that offer lifelong protection against infection, Alzheimer’s, and ... maybe the effects of aging." If true, this technology would revolutionize healthcare. It would be absolutely world-changing. But to be clear, by editing the genes that people would pass on through time to their offspring, in essence, we are talking about eugenics and designer babies.

Church seems ready not just to design babies for desirable traits. He is interested in editing the genes of people to augment them beyond normal limits, to make them, in effect, superhuman. Sound like science fiction? The X-men perhaps?  "Church likes to show a slide on which he lists naturally occurring variants of around 10 genes that, when people are born with them, give them extraordinary qualities or resistance to disease. One makes your bones so hard they’ll break a surgical drill. Another drastically cuts the risk of heart attacks. And a variant of the gene for the amyloid precursor protein, or APP, was found by Icelandic researchers to protect against Alzheimer’s. People with it never get dementia and remain sharp into old age."  

 
By Anthony Regalado in MIT Technology Review
2. Would Human Nature Change?

The researchers in China crossed "a boundary that scientists have avoided since the dawn of genetic engineering 42 years ago." These articles go into a little more detail about the concern with germ line engineering. “Every time you make a sperm or an egg cell, you’re scrambling the genomes you inherited from your mom and dad, so who the hell knows what could happen,” said David Al​bertini, who researches fertility treatments and regenerative medicine at the University of Kansas Medical Center. “You might have effects that show up not in the first generation, but in the second, third, or fourth one.”

Arthur Caplan, who heads up medical ethics for NYU's Langone Medical Center believes germ line engineering is about more than treating disease, "This is about fundamentally changing human nature.”

This New Gene-Editing Technique Is About to Be Very Controversial
by Steph Yin in Motherboard

And

Chinese researchers alter embryo DNA: Do results cross ethical tripwires?
by Pete Spotts in Christian Science Monitor

3. Stop!

Jennifer Doudna is a professor at the University of California at Berkeley. She is also one of the inventors of the CRISPR-cas9 gene editing method. She also believes the method she invented should be banned. 

Doudna and her colleagues are concerned that CRISPR is so effective and easy to use that it enables experiments that could never have been feasible before. But are those experiments reasonable?"Assuming the safety and efficacy of the technology can be ensured, a key point of discussion is whether the treatment or cure of severe diseases in humans would be a responsible use of genome engineering, and if so, under what circumstances.

For example, would it be appropriate to use the technology to change a disease-causing genetic mutation to a sequence more typical among healthy people? Even this seemingly straightforward scenario raises serious concerns, including the potential for unintended consequences of heritable germline modifications, because there are limits to our knowledge of human genetics, gene-environment interactions, and the pathways of disease (including the interplay between one disease and other conditions or diseases in the same patient)." In other words, might scientists cause even greater problems than those they are trying to solve?

Doudna and a group of scientists published a paper in the journal Science to call for a worldwide moratorium on testing techniques for editing inheritable human DNA. Any such research is already banned in the U.S. and Europe, but is not other countries, like China, for instance. The group of scientists hope to achieve something like the Asilomar consensus. In 1975 scientists and ethicists gathered in Asilomar, California to agree to a moratorium on experimentation with recombinant DNA until they could more thoughtfully address the implications and put safeguards in place. Doudna and her colleagues want to repeat that experience and give us all time to think about what to do. Is it too late? Has JunJiu Huang let the genie out of the bottle? 

Scientists Seek Ban on Method of Editing the Human Genome
by Nicholas Wade in The New York Times
4. Two Nobel Prize Winners Argue for Prudence 

David Baltimore and Paul Berg joined Doudna in calling for the moratorium. These two guys won Nobel Prizes and were central to the Asilomar convention. Baltimore was the Dean of Cal Tech and Berg taught biological chemistry at Stanford. I'll let them speak for themselves on the CRISPR debate: 
 

"To understand the challenge brought by this technology it is important to make a distinction between somatic cells and germ-line cells. Somatic cells are the run-of-the-mill cells of our bodies: muscles, nerves, skin and the like. Germ-line cells are the egg and sperm cells that, when joined, give rise to offspring. Making gene changes in somatic cells can have dramatic effects, but they are not transmitted to the next generation and therefore fall comfortably into the category of pure therapeutics and generate minimal controversy.

It is changes in germ-line cells that create heritable alterations...such changes would be inherited not only by the next generation but by all subsequent generations. Thus the decision to alter a germ-line cell may be valuable to offspring, but as norms change and the altered inheritance is carried into new genetic combinations, uncertain and possibly undesirable consequences may ensue."

And one more: There are two types of germ-line modification to think about. One aims to eliminate a defect responsible for a serious disease, an outcome most would view as an unalloyed good...If we could assure that a child of afflicted parents did not inherit Huntington’s Disease, for example, that would be a blessing to the child, to the parents and to society...The other, more unsettling kind of germ-line modification would involve attempts to modify inheritance for the purpose of enhancing an offspring’s physical characteristics or intellectual capability.

We can call this voluntary modification in that there is no compelling medical need. Choosing to transmit voluntary changes to future generations involves a value judgment on the part of parents, a judgment that future generations might view differently...This can be seen as eugenics."

Let’s Hit ‘Pause’ Before Altering Humankind
By David Baltimore and Paul Berg in The Wall Street Journal

5. This Question is Ours To Answer

Thanks to Philip for this article whichgives some more background on the Asilomar conference yet critiques it for failing to deal adequately with the three topics it proposed to address: the environment, biosecurity, and human genetic designing. They argue that we can't leave these questions to scientists or any experts, we need a full democratic conversation about it.

The authors write,  "Knowing science does not teach us how to live well with its power. Our universities need to devote more resources to teaching the relationship between science, technology and society so as to produce the citizens, the concepts, and the conversations capable of guiding our common future."

 
Human genetic engineering demands more than a moratorium
by Sheila Jasanoff, J. Benjamin Hurlbut and Krishanu Saha in The Guardian.
Worth Watching

The Story Behind Jonas Paul Eyewear

Ben and Laura Harrison are entrepreneurs whom I got to hear speak and briefly meet this week. The company they have started, Jonas Paul provides fashionable eyewear for kids with poor eyesight so that even if your boy has to wear glasses, "he can still look like a little stud-muffin." They also sell these glasses for a fraction of the price of other alternatives and give away some of the profits to provide eyewear in the developing world. They are like the Warby Parker for kids. The company's namesake, Jonas Paul, is their son who was born nearly blind. Their story of love for their son, creativity and enterprise is inspiring and told partially in this video. I have no idea if, were they given the choice, they would choose to have had their son's genes genetically modified and improved so he would never have suffered. I have to think it's tempting.

On the other hand, their story of unconditional love for their son i
s a testament of their faith. There may someday be a genetic "fix" for blindness but what we need more is something technology can't provide: hearts that are willing to sacrifice for each other, and love each other regardless of how we're made and how well our bodies work.
Story Behind Jonas Paul Eyewear
The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart.
 
― Helen Keller
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