Showing posts with label technology. Show all posts
Showing posts with label technology. Show all posts

Wednesday, July 18, 2012

NO EASY CHOICE by Ellen Painter Dollar

I bought a car recently, and the dealer just sent me an online survey. It asks a lot of detailed questions and asks for yes-or-no answers. Unfortunately, it's been several weeks since I was in the dealer's showroom, and I have no idea if the salesman offered me a drink, for example, or if he showed me how to work the sound system. So I tried to leave some questions unanswered, but the survey won't allow that. Either I say yes or no, or I don't take the survey at all.

How contemporary, I thought. And how destructive of attempts to tell the truth.

Ellen Painter Dollar does not say yes or no in No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction, but she tells the truth. In a book that is part memoir, part journalism, she recounts her lifelong struggle with osteogenesis imperfecta (OI)--her own and her daughter's.

OI, she writes, is "a genetic disorder better known as 'brittle-bone disease.' Frequent broken bones, often as the result of little or no trauma, are the hallmark of OI." People with OI will spend a lot of time in emergency rooms. They will have a great deal of pain. They may also have "muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature," says the OI Foundation's website. They may look funny, especially to mean kids in middle school. Because of their frequently broken bones, their parents may be accused of child abuse. And half the kids born to people with OI are likely to have OI too.

Except that nowadays, reproductive technology offers potential parents a choice. For nearly 35 years, it has been possible to fertilize an egg in a test tube ("in-vitro fertilization," or IVF) and then implant it in a woman's womb. For more than 20 years, it has been possible to examine those fertilized eggs for genetic mutations and implant only the healthy ones. This is called "preimplantation genetic diagnosis," or PGD. If Dollar and her husband could come up with the money, they could use PGD to assure that, if they had a second child, it would be born free of the disease she and her daughter shared.

So, should the Dollars have looked for dollars and gone for an OI-free child? Yes or no?

Before saying "No brainer!" or "No way!" you'd do well to read No Easy Choice. If you like things cut and dried, it will drive you nuts. Dollar sees the good and the bad, the right and the wrong, the wise and the foolish in just about every argument. She tells stories that show how solidly she identifies with everyone who's struggling with reproductive issues. But after you've sat down with her and examined dozens of arguments pro and con, and after you've joined her in wrestling with scores of intellectual and emotional questions regarding her own highly charged decisions, you'll have a much better idea of the possible implications of any choice you, or anyone else, might make.

This is a personal story, not a textbook on medical ethics. Dollar is an evangelical Christian, and her conservative faith is the ever-present background of her drama. Don't expect her book to sound like a sermon, however. It is compulsively readable, with a touch of suspense. When you have finished it, you will feel that you and Ellen are friends. You may be surprised by her eventual choices. You may disagree with other readers about whether she made the right decisions. You may, in fact, not be entirely sure about where she stands.

This openness, I think, is one of the strengths of No Easy Choice. Dollar knows that not all questions have yes-or-no answers, and she refuses to check those boxes when a decision requires more nuanced thinking. Instead, she faces the hard questions and their real-life implications, looking at the yeses and the noes and the maybes and the maybe nots. In the end, she does what we all must do, given our human fallibility--she leans on God's grace for wisdom, forgiveness, and courage.

I don't think it will be a spoiler if I quote the last sentences of her book:
The Christian narrative does not provide an obvious answer to whether it's ethically sound for believers to use IVF, PGD, or other assisted reproduction techniques. But it does provide a grounded, hopeful context in which to ponder essential questions about whether and how we will bear children as technology offers us ever-more-sophisticated techniques to do so. Infertility and family legacies of genetic disease inevitably cause substantial pain, but the Christian story invites us, even while we are mired in that pain, to believe in and cling to the extremity of love.

Saturday, February 18, 2012

HEART 411 by Marc Gillinov and Steven Nissen

Many of our colleagues claim that there are two types of people in the world: people who have coronary heart disease and people who are going to get it.... Our goal is to create two new classifications of people: those who have been successfully treated for coronary heart disease, and those who have avoided it altogether. 
--Marc Gillinov and Steven Nissen in Heart 411 

I grabbed Heart 411 just as soon as I heard of it (it was published January 31). Less than six months ago, I had open heart surgery at Cleveland Clinic, America's top-ranked heart hospital, where Dr. Gillinov is a cardiac surgeon and Dr. Nissen is chair of the department of cardiovascular medicine. I'm doing well, thank you, but I still have lots of questions. I figured these doctors would be able to answer them.

It's a wonderful book, though as it turns out, Gillinov and Nissen didn't really write it just for me. They wrote it for people who have heart disease and don't know it (but could easily find out), and for people who are very likely to develop heart disease (but don't need to), and for people who have had surgery for heart disease at least once and will probably need to have it again ...  and again (but could put a stop to the pattern).

Perhaps as much as 90 percent of heart disease, they are convinced, is entirely preventable (the other 10 percent is hereditary or, like my problem, congenital: such problems can be fixed, but can't be prevented). Alas, they write,

we heart doctors tend to "fix" the plumbing problem of the moment and then move on rapidly to the next one. All too often, patients become "cases" ("Can you check on the 80 percent left main coronary artery obstruction in cath lab number 4?") rather than people in desperate need of advice and counseling.
Doctors Gillinov and Nissen want to fill the gap left when the last "kindly, unhurried, gray-haired gentleman with a white coat, a black bag, and a stethoscope" left our doorsteps and began practicing high-tech assembly-line medicine. They want to sit down and chat with us about our risk factors, our food and drink, how we exercise, our emotional life, the medicines we take, whether we need surgery or can avoid it ... and lots of other things (check out the table of contents by clicking here, then clicking "Search inside this book").

This could have been a dreary read, as serious as, well, a heart attack. Fortunately, it isn't. The book is designed for easy reading and reference, with lots of subheadings to help us find what we're looking for ("Questions to Ask Before You Have a Heart Test") and to interest us in information we might not have thought to ask about ("Good Vibrations: Do Positive Emotions Provide Cardiac Protection?"). Flipping pages, we'll find frequent sidebars with fascinating factoids ("Why We Put Salt in Our Food," "Three Simple Household Routines Help Prevent Obesity," "Cardiovascular Disease in Mummies").

Even better, the authors are good writers. I don't think they used a ghost; Gillinov mentions his love of writing, and the diction lacks the airy chirpiness that characterizes so much ghosted material. Their explanations are clear and simple, free of technical jargon so laypersons will not have to struggle to follow. They tell lots of stories, and tell them well. They even have a wry sense of humor. This book can be used for reference, of course, but it's so interesting that you might want to just sit down and read it straight through.

Ignore the subtitle. It isn't really The Only Guide to Heart Health You'll Ever Need (I'm sure the authors were surprised when the publishers came up with that one). As they write on page 196, "Medical researchers periodically uncover new evidence that results in profound changes in our approach to heart disease.... We must accept that today's wisdom may seem foolish tomorrow." That's why Chapter 9, "How to Tell Fact from Fiction: Sorting Through the Medical Evidence" is so important. If you're like me  (and 61 percent of other Americans), you go online to find answers to your medical questions. Unfortunately, a huge percentage of what we find there is purest junk, and even the reputable studies can be hard for a layperson to evaluate. A skeptic by nature, I thought I knew how to sift through internet information and come up with truth, or at least facts. I figured I didn't need this chapter, but I read it anyway - and I learned a lot that will come in handy even when this book is long out of date.

Throughout the book the authors do plenty of fact-checking themselves, advising us on which popular beliefs to keep and which to toss. Is fat bad? Not necessarily. Is wine good? Could be. Are generics and brand-name medications equally effective? Depends on the medication. Should you have a physical exam before beginning an exercise program? Maybe not: consider these factors.

I have just one bone to pick with the authors: their analysis of hormone replacement therapy is flawed. Yes, the Women's Health Initiative studies came up with damning evidence against Prempro, but Gillinov and Nissen use those studies to damn all long-term hormone replacement. What is true, however, of orally administered hormones made from equine estrogens is not necessarily true of transdermally administered hormones made from bioidentical plant sources. In fact, subsequent research reported in the British Medical Journal, a publication rated highly by Gillinov and Nissen, shows that there are indeed differences in HRT that need further exploration.

But bless Gillinov and Nissen, they never come across as know-it-all M.Deities. They know they are writing to intelligent, informed readers, and they treat us with respect - an amazing feat for people who spend most of their waking hours looking at people wearing hospital gowns.

Wednesday, May 4, 2011

VIRTUALLY YOU by Elias Aboujaoude

A virulent danger lurks in our homes, in our offices and—very likely—in our pockets. It may rewire our brains and erect a barrier between us and our cultural heritage (says Nicholas Carr in The Shallows). It may play havoc with our personal relationships and our sense of identity (cautions Sherry Turkle in Alone Together).

It may even nudge us into full-fledged pathological behavior, either creating new disorders or bringing out abnormalities that already lie deep within us. So warns Elias Aboujaoude—a psychiatrist and the director of Stanford University's Obsessive-Compulsive Disorder Clinic located in Silicon Valley, the world's technological heart—author of Virtually You, one of this year's most thought-provoking jeremiads.

The danger, according to a swelling chorus of authors, is the Inter­net, or the way we use the Internet, or the way we have stopped doing a lot of things we used to do before the Internet took over our lives. "While the Internet is a force for good in many arenas," writes Aboujaoude, "it also has the power to interfere with our home lives, our romantic relationships, our careers, our parenting abilities—and our very concept of who we are."

From the opening paragraphs of my review, newly published in "Christian Century" magazine and on its website. Read the rest of the review by clicking here.

Friday, February 4, 2011

THE EMPEROR OF ALL MALADIES by Siddhartha Mukherjee

When I posted on Facebook that my husband was reading a book about sewers while I was reading a book about cancer, a lot of our friends made wisecracks. Yes, we probably do need to get a life - but not because of these particular books. The mark of a really good nonfiction author is the ability to interest readers in a topic that normally bores or even repels them. Siddhartha Mukherjee is a really good author, and The Emperor of Maladies is a gripping read.

An oncologist who researches and teaches at Columbia University and a staff physician at Columbia University Medical Center, Mukherjee writes about science so clearly that even nonscientific liberal-arts people like me can follow. He's obviously a liberal-arts person himself, referring to Plato's Republic as well as Agatha Christie's St. Mary Mead; using the Red Queen's race in Through the Looking-Glass as a metaphor for contemporary cancer research and an ancient Persian queen's self-directed mastectomy as a metaphor for progress in cancer treatment; quoting Shakespeare, William Blake, Voltaire, and Kafka along with cancer researchers and patients and surgeons-general.

The incredibly erudite Dr. Mukherjee, who is still a young man, may be the one who needs to get a life, but I'm grateful that he's chosen to write this long, detailed, fascinating account of the history of cancer research instead.

The book begins with Carla:
On the morning of May 19, 2004, Carla Reed, a thirty-year-old kindergarten teacher from Ipswich, Massachusetts, a mother of three young children, woke up in bed with a headache. "Not just any headache," she would recall later, "but a sort of numbness in my head. The kind of numbness that instantly tells you that something is terribly wrong."
It ends with Germaine:
Her quest for a cure had taken her on a strange and limitless journey, through Internet blogs and teaching hospitals, chemotherapy and clinical trials halfway across the country, through a landscape more desolate, desperate, and disquieting than she had ever imagined. She had deployed every morsel of energy to the quest, mobilizing and remobilizing the last dregs of her courage, summoning her will and wit and imagination, until, that final evening, she had stared into the vault of her resourcefulness and resilience and found it empty. In that haunted last night, hanging on to her life by no more than a tenuous thread, summoning all her strength and dignity as she wheeled herself to the privacy of her bathroom, it was as if she had encapsulated the essence of a four-thousand-year-old war.
In the 470 pages between Carla and Germaine, Mukherjee gives us what he calls "a biography of cancer" - the story of a disease born before recorded time and first mentioned in an Egyptian manuscript from 2500 B.C., a disease that may never die but that is increasingly being contained and managed. Most of the book follows 19th- and 20th-century researchers as they seek to understand what cancer is and how to target it; surgeons as they try to contain it by removing tumors and, sometimes, unaffected body parts as well; politicians and lobbyists as they campaign for more money for cancer research; and geneticists as they discover which parts of which genes are responsible for cancer's mad proliferation.

We all have friends and family members who are living with - or have died from - cancer, and we all are familiar with procedures like radiation and chemotherapy. This book will help you understand what cancer is,  how it is being fought nowadays, why various approaches are used, and how typical treatments have changed over the last decade or two. It does not, however, recommend treatments. It does not tell you what to do or what to avoid in order to escape or recover from cancer - with one exception: Don't smoke. And if you smoke, quit.

In four fascinating chapters in Part Four, "Prevention Is the Cure," Mukherjee tells the story of America's love affair with cigarettes. In the early 20th century, four out of five American men, including doctors and cancer researchers, were smokers. It was hard to get physicians even to consider the possibility that smoking was related to lung cancer, even harder to get policymakers to try to protect the public, and just about impossible to get tobacco companies to speak honestly about their product. Not until the 1960s did a brave and savvy surgeon-general dare to confront Big Tobacco, and U.S. smoking rates started to fall. In response, the tobacco companies began targeting the developing world, where cancer rates are now predictably rising.

"It is difficult for me to convey the range and depth of devastation that I witnessed in the cancer wards that could be directly attributed to cigarette smoking," Mukherjee writes.
It remains an astonishing, disturbing fact that in America - a nation where nearly every new drug is subjected to rigorous scrutiny as a potential carcinogen, and even the bare hint of a substance's link to cancer ignites a firestorm of public hysteria and media anxiety - one of the most potent and common carcinogens known to humans can be freely bought and sold at every corner store for a few dollars.
Amazon listed The Emperor of All Maladies among its best books of November 2010. Publishers Weekly and Booklist gave it starred reviews. The New York Times called it one of the 10 best books of 2010. No, reading about cancer doesn't sound like an exciting way to spend an evening (well, in a book this big, several evenings), but be willing to surprise yourself.

Hey, even Oprah's reviewer loved it: "With a Dickensian command of character and an instinct for the drama of discovery," he wrote,  Mukherjee "makes science not merely intelligible but thrilling."

Coming next: David's review of the book about sewers.

Saturday, September 25, 2010

THE SHALLOWS by Nicholas Carr

Three months ago I commented briefly on The Shallows, a then-hot-off-the-press warning that the Internet could lead to "a reversal of the early trajectory of civilization." At the same time I e-mailed a review of the book to The Christian Century magazine. You can finally read my review here.

Ironically, thanks to the Internet, The Shallows is already old news. Numerous commentaries on the controversial book have been published during the three months required to get my review into print. (This is not the Century's fault, by the way; it's just how print publication works.)

What's more, the print version isn't even as helpful as an online version could have been. If I'd posted my review on my blog, you would have been able to click through to Carr's original article in The Atlantic as well as to more info on Carr's other books.

Clearly print publication has some major limitations.

If Carr's thesis about the Internet is right, however, our minds are already too fried to read an entire magazine article anyway. Chances are, if I'd posted it online, readers would have clicked the first link and stopped reading the review. So I'm not going to write more about The Shallows here--Carr would suggest that this 246-word post may already be testing the limits of your attention span. But since (according to Carr) you really enjoy clicking links, let me encourage you to check out my complete review--"How Our Minds Have Changed"--here.