Up@dawn 2.0

Friday, February 17, 2017

Henrietta Lacks, The Road to Dolly...

In 1998, Modern Times: The Way of All Flesh, a one-hour BBC documentary on Henrietta Lacks and HeLa directed by Adam Curtis, won the Best Science and Nature Documentary at the San Francisco International Film Festival. Immediately following the film's airing in 1997, an article on HeLa cells, Lacks, and her family was published by reporter Jacques Kelly in The Baltimore Sun... In her 2010 book, The Immortal Life of Henrietta Lacks, Rebecca Skloot documents the histories of both the HeLa cell line and the Lacks family... (continues)

Imagine something small enough to float on a particle of dust that holds the keys to understanding cancer, virology, and genetics. Luckily for us, such a thing exists in the form of trillions upon trillions of human, lab-grown cells called HeLa. But where did we get these cells? Robin Bulleri tells the story of Henrietta Lacks, a woman whose DNA led to countless cures, patents, and discoveries. View full lesson: http://ed.ted.com/lessons/the-immorta...

More new books of interest:

by Michael D. Lemonick.
Doubleday, 2017 ($27.95)

Lemonick, an editor at Scientific American, delivers a finely observed profile of Lonni Sue Johnson, an artist and musician who developed a rare viral infection of the brain that destroyed much of her capacity to recall the past and form new memories. Amazingly, the virus left many other parts of her cognition intact, including her speech, exuberant personality, and ability to write, draw and play the viola. Because she was more accomplished before her illness than any other amnesiac previously studied, Johnson has offered scientists an unparalleled opportunity to learn how memories are made, stored and retrieved—for instance, after becoming sick, she failed to recognize many well-known works of art but recalled in perfect detail how to paint a watercolor and describe her technique. Lemonick details Johnson's willing participation in this research, writing of how she lightened up sessions in the functional MRI machine by singing to herself. He also introduces readers to Johnson's mother and sister and the community of neighbors and artists in her adopted town of Cooperstown, N.Y., who rallied to her aid, such as by playing music for her in the hospital and ensuring that she could continue making art. —Christine Gorman

by Cordelia Fine.
W. W. Norton, 2017 ($26.95)

The hormone testosterone has taken on almost mythical status in popular consciousness, often credited with outlandish feats, such as causing the 2008 financial collapse (supposedly because it drove male-dominated Wall Street to extreme levels of risky behavior). But psychology professor Fine demonstrates that testosterone “is neither the king nor the king maker—the potent, hormonal essence of competitive, risk-taking masculinity—it's often assumed to be.” She canvasses the history of research showing that testosterone's effects are less powerful and predictable than commonly thought and that male and female brains are not nearly as divergent as popularly believed. Further, she convincingly and entertainingly demonstrates that, despite stereotypes, such characteristics as risk-taking, competitiveness and nurturing are not “essential” to one sex over the other and cannot be blamed for the lack of equality between males and females in contemporary society.

by Bill Schutt. Illustrations by Patricia J. Wynne.
Algonquin Books, 2017 ($26.95)

Plenty of animals cannibalize one another as part of mating or child rearing or for simple hunger. That includes biology professor Schutt, who ate cooked placenta osso buco as research for this humorous history. The story's appetizer is an exploration of cannibalism in nature, such as the practices of fish parents that swallow mouthfuls of their own eggs or of spiders that eat their partner's abdomen while copulating. Humans are the book's main course. Sometimes we consume one another under great duress, such as the famous Donner party, the 19th-century pioneers who ate their dead after a snowstorm marooned them in the Sierra Nevada mountain range. We even eat other humans for supposed medicinal benefits: pharmacies sold powdered ancient Egyptian mummies as recently as 1908; today some mothers consume their own placenta for unproved health benefits. The book is enhanced by the charming drawings of Pat Wynne, whose art has also graced the pages of this magazine. —Ryan F. Mandelbaum

by Haider Warraich.
St. Martin's Press, 2017 ($26.99)

Medical advances over the past century have given doctors unprecedented tools to stave off death, pushing life expectancies longer and longer. But the more we learn about dying and how to prevent it, the blurrier the line looks between life and death, physician Warraich writes: “These days we can't even be sure if someone is alive or dead without getting a battery of tests.” Both research and human experience would benefit if we could talk more openly about death, he argues. To aid that goal, Warraich demystifies what is known and unknown about how cells and bodies die, while sensitively grappling with the changing cultural landscape surrounding the end of life, including patients who tweet and share the details of their decline on social media. His story is filled with compassionate accounts of the different ways he has witnessed people meet death in the modern age.

Washington Post (@washingtonpost)
Fact Checker: Trump’s claim that there’s "tremendous amount of increase" in autism cases wapo.st/2lncLHq

A Way Forward in Gene Editing

THE 1997 FILM “Gattaca” predicted a near future in which cities are powered by vast solar thermal arrays, humans launch manned missions to Saturn’s moons, and doctors design super smart and strong babies. A generation later, it is the gene editing that is proving most prescient.

Over the past decade, huge advances in gene-editing techniques have enabled researchers to slice up and rewrite DNA with incredible precision. At the forefront of the ensuing revolution is the CRISPR-Cas9, a technology derived from bacteria that enables scientists to snip and repair DNA, nucleotide by nucleotide, quickly and cheaply. The potential uses are vast. And so are the ethical quandaries.

The National Academies of Sciences and the National Academy of Medicine convened a panel to recommend guidelines for the use of powerful gene-editing tools. The results, released this week, are thoughtful and should — for the moment, anyway — channel research and testing in unambiguously positive directions.

CRISPR can be used in basic laboratory research, revealing how disease works on the molecular level. This is similar enough to other types of lab research that it requires no novel scientific or ethical standards. Researchers can also treat live humans with gene editing technologies, for example by taking immune cells out of the body, altering them and re-inserting them to fight an advanced cancer. Therapies such as these are already under development, and although researchers have to be cautious about “off-target” gene slicing, existing rules governing the development of medical treatments should suffice.

The ethics get much trickier when researchers want to change the DNA in reproductive cells, which would alter the genes that parents pass to children, forever. Doing so could prevent vast amounts of human suffering. But there is a problem of consent: Future generations have no say in their alteration. Disability communities would no doubt feel threatened and stigmatized, because gene editing could be used to essentially remove their type from the gene pool. Changes made to enhance human offspring, rather than simply to combat disease and disability, could redefine what it means to be human, while those to whom these techniques are unavailable would risk becoming a genetic underclass. A line would have to be drawn between heritable changes that are clearly valuable and those that risk unnecessarily humiliating people, destabilizing society and changing the nature of humanity.

The panel attempted to draw a preliminary line — and put it in the right place. Heritable changes should be attempted only when scientists are convinced that specific genes cause or strongly predispose people to getting a serious disease or a condition, and when they know what normal genetic code should look like. They should only intervene when there are no reasonable alternatives available to families, and when real-world evidence shows that the benefits outweigh the risks.

The debate will not — and should not — end there. But before society has a full chance to process these questions, the panel’s approach is the right one. The goal should be to stop crippling diseases, not to build designer babies. WaPo

Read more on this topic:

First, Sex Ed. Then Death Ed.

FIVE years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.

When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.

As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.

Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.

I believe that this is true of death, too.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Every weekday, get thought-provoking commentary from Op-Ed columnists, the Times editorial board and contributing writers from around the world.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.

I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.

We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better. nyt

Family Plans to Seek Compensation for Henrietta Lacks' Cells
FEB. 14, 2017 Associated Press

BALTIMORE — The son of Henrietta Lacks is seeking compensation for the unauthorized use of his mother's cells in scientific research since her 1951 death, as detailed in a best-selling book.

The Baltimore Sun reports (http://bsun.md/2kPOucp ) that Lawrence Lacks, his son and daughter-in-law say they plan to file a lawsuit against Johns Hopkins University in coming weeks.

Attorneys previously told the family the statute of limitations had passed, but attorney Francis Lanasa says he would use a "continuing tort" argument that Johns Hopkins continued to violate the "personal rights, privacy and body parts" of Henrietta Lacks over time.

Johns Hopkins officials say no established consent practice or regulations on cell use for research existed when the cells were taken.

The 2010 nonfiction book "The Immortal Life of Henrietta Lacks" focuses on Lacks' cell line, one of the most important in medical research. nyt

No comments:

Post a Comment