To what extent is a person allowed to alter their body?

Medical ethics, mental illness and a physician's responsibilities to alleviate suffering are called into question in Anil Ananthaswamy's article for Matter Magazine, 'Do No Harm.'

Body Dysmorphic Disorder (BDD) is a mental illness commonly seen in adolescents and young adults with anorexia and bulimia, while in males it can cause excessive bodybuilding as well. The patient cannot reconcile his actual physique with the mental image he has of himself. This causes many young ladies who would be considered painfully thin to see themselves as bloated and disgusting, causing them to participate in risky behaviors to lose weight that isn't there to lose. In males, many see themselves as scrawny or weak, causing equally risky workout routines to 'bulk up' an already impressive physique. Mortality risk can be high in both instances, as the patient takes more and more extreme measures to achieve the unrealistic goals they've set for themselves. Once identified, psychiatric therapy and, in some cases, medication can be moderately effective in helping these individuals regain more healthy lifestyles.

Transgender individuals face some of the same problems. Their internal gender identity doesn't match up with their physical sex, and the social stigma of bringing their physical self in line with their mental and emotional self can cause years of depression, anxiety and other emotional problems. Unlike with BDD, transgender people do not respond to psychiatric treatment or medication, and generally are happiest when allowed to live as they wish, whether simply dressing and acting as their self-identified gender, or going farther with hormone therapy and surgery. These treatments are generally accepted to be medically valid, and a transgender person can have a reasonable expectation of treatment.

A much less well known phenomenon is starting to gain the attention of the medical community. Body Integrity Identity Disorder (BIID), on the ouside, seems fairly close to to BDD. These patients feel that their self, their internal body image doesn't include one of their limbs. These sufferers are the topic of Ananthaswamy's 'Do No Harm.'

Sufferers of BIID feel like the limb isn't theirs. They see that it's attached, it functions perfectly normally, but their mental image of themselves simply doesn't include it. It's a hunk of flesh that they don't want, but no amount of diet or exercise is going to get rid of it.

Unlike patients with BDD, neither therapy nor medication gets rid of the symptoms. There is no accepted physical cause, and in fact, if the limb is removed, the associated depression and anxiety go away. The patient is left perfectly happy, with a physical self that finally matches their self-image.

The problem that sufferers of BIID run into is that no medical practitioner is going to remove a perfectly healthy limb simply because the person in front of them says that they want it gone.This has caused many with this disorder to try life-threatening measures to damage said limb to the point where doctors have to amputate. Another path is to find a back-alley surgeon, or a doctor in a country where money talks more than medical licenses. Both paths have their own inherent risks, but after exhausting the medical establishment, there aren't many options left.

'Do No Harm' explores the medical ethics of the situation, as well as the desperation of those who suffer from BIID. No longer suffering alone, Ananthaswamy explores the support groups these people have formed online, interviews doctors who have come face-to-face with people with BIID, and challenges the reader to make her own decision regarding the question at the heart of this problem: does a person have the right to alter his own body as he sees fit?

Highs: Ananthaswamy does a wonderful job seeking out as many viewpoints as possible for this article, which gives it amazing depth.

Lows: Some of the people the author interviews aren't the most likable of people, but the perspectives they give are necessary to the narrative.

Verdict: A fascinating look at a mental illness that doesn't get much press, available for free at the Matter Magazine website.

Further Reading: 'Electric Shock!', The Immortal Life of Henrietta Lacks

A hospital tries to save Japan's first 'Criticality' victim

Environmentalists have a terrible time with energy production. Coal, nuclear, wind, solar, natural gas-each falls in and out of favor in turn. Recently, it's been nuclear power's turn at being bashed, although perhaps the talking heads with turn to wind farms changing air currents soon.

A Slow Death: 83 Days of Radiation Sickness by the NHK-TV “Tokaimura Criticality Accident” Crew could so easily have been just another diatribe against nuclear energy. It could have been manipulative, full of the authors' condemnation of nuclear proliferation and misinformation about nuclear science and history.

Instead, A Slow Death is a critical look at the regulation of an industry, the ethics of experimental medicine, and end-of-life care and its effects on both the family and the healthcare workers involved. Ouchi's fate was determined the moment he saw the Cherenkov light and his body was bombarded with neutron beam radiation, but the events of the next three months are a look into the inner-workings of a medical system woefully unprepared for what was wheeled into their emergency room that day.

The first failure is, of course, on the part of the private uranium processing facility for which Ouchi worked. Completely ignoring international regulations regarding the processing of uranium, the plant had the workers pouring components into the precipitation tank via bucket and funnel, rather than the components being added by a pump. On top of this, the precipitation tank was shaped differently, allowing a build-up of the fissionable Uranium-235 to form. On top of this, it seems that Ouchi was never informed that this was not the standard operation protocol; he had no idea that the job he was doing had any inherent risk at all.

Being so near Tokyo, Ouchi was immediately taken to one of the finest hospitals in Japan. Attached to the University of Tokyo Department of Medicine, Ouchi was to have the best doctors and nurses available taking care of him. Kazuhiko Maekawa, the doctor who would be in charge of Ouchi's treatment plan, was a master of emergency medicine. Able to treat anything that might roll in his doors, from stroke patients to trauma victims, at the suggestion of a colleague only recently started looking into the treatment of radiation victims. The framework by which a radiation exposure patient would be assessed and treated was completely nonexistent at the time, so Maekawa would be treading in unknown water.

In this aspect, the book is absolutely not a condemnation of the facility or its staff. No patient exposed to more than 8Sv of radiation had ever survived more than a week. In living for almost three months, new ground was being tread almost every day. For example, it takes two weeks for epidermis cells to go from creation to the top layer of the skin. Ouchi's chromosomes were shattered, so no new skin could be generated. As the existing skin across his body went through its natural life cycle, there would be no new skin to take its place. Marks from removing the tape that held his IVs and other medical devices in place would never heal, and eventually the use of medical tape was forbidden. As muscle tissue was destroyed, traumatic rhabdomyolysis - Crush Syndrome - developed. The massive release of myoglobin into the bloodstream overwhelmed his kidneys and caused them to begin to shut down. Even a stem-cell transplant from his sister to boost his decimated immune system created macrophages that attacked his own systems.

In the beginning, Ouchi was in very good spirits, accepting the often painful treatments that the doctors and nurses performed. As is still the practice in Japanese hospitals, neither the patient nor the family is told of how bleak the situation truly is. Because of this, although the staff valiantly tried to keep Ouchi alive, he and his family had no information by which to decide when treatment should be ceased. Not until Day 81, 22 days after a cardiac arrest left him unresponsive, did Maekawa finally explain the current situation to his family, and suggest that a DNR order be put in place. 

The question this raises is at what point would the family, and perhaps Ouchi himself, have decided to end active treatment and simply decided to wait for the inevitable with palliative care? Ouchi's brain waves never actually flatlined: could he have experienced locked-in syndrome for weeks after his ability to communicate failed? How many dressing changes, how many skin grafts, how much isolation in an ICU ward transpired after all hope should have been set aside? These are the questions that the doctors and nurses involved in the case carry with them to this day.

A Slow Death is a hard book to read. From the beginning, the reader knows the end of the story. Each new treatment, each moment of hope, must eventually end in failure. Parts of the book read awkwardly, perhaps journalistic writing transposed into a book form is to blame, or maybe translation difficulty. Even with these hurdles, it is still a quick book to read, totaling only 141 pages. This is a contemporary look at a very rare situation, and with so much firsthand information and interviews, it's equal parts fascinating and horrifying throughout.

Highs: Inset 3, the micrograph of his chromosomes 'destroyed into pieces' shows the reader, perhaps better than any external photo could, the amount of damage that a split-second of radiation can do to a living creature.

Lows: The back-and-forth between the clinical science of the situation and the emotional impact of a human being going through such pain can be jarring.

Verdict: An important look at both corporate and medical ethics, and short enough to be read in an evening, A Slow Death imparts a lot of knowledge quickly, and leaves the reader a lot to ponder.

Further Reading: The Immortal Life of Henrietta Lacks

A Merry Christmas Non-Fiction Shopping List

The Non-Fiction Shopping List 2012

It's the beginning of the holiday shopping season, and it's time to start checking peoples' Amazon wish lists and listen for hints. Book readers can be a squirrley bunch, though, and none more so than those who read non-fiction. Some people read non-fiction simply for the desire to learn about the world around them, while others look down at fiction readers as escapists. Whatever the reason, there's plenty of good true stories out there to be given. Here's a few, along with the suggest audience for each.

The Reluctant Communist: My Desertion, Court-Martial, and Forty-Year Imprisonment in North Korea

North Korea's been all over the news this year, with last winter's death of Kim Jong-Il, the rise of Kim Jong-Un and his wife Ri Sol-Ju, and the loosening of some of the restrictions there. This is a rather unique look into the most cloistered country in the world, through the eyes of an American POW.

Recommended for: the current-affairs and news junkies on your list.

A Man With No Talents

This is a rare look into one of the less shiny subcultures in Japan. Writing with the pen name Oyama Shiro, this chronicles the life of a day laborer through the bubble years and following recession in Japan. Unable to fit into the salaryman role laid out for him, the narrator take the more difficult, yet ultimately more freeing life of manual labor. Living in a bunk in a boardinghouse, not only does he blame no one for his fall in status, he thanks his society for giving him the opportunity to live as he wishes, with no responsibilities to anyone but himself.

Recommended for: people struggling with the current American recession, those who believe Japan has no underside.

The Boy who Harnessed the Wind

William Kamkwamba lived through some of the hardest times in Malawi. With his father unable to bring in a harvest, he couldn't afford to go to school. Even when he was young, though, he thought it was a shame that work and study had to end when it got dark. While trying to piece together an advanced science book in the village's library, he put together the bicycle lights he's seen around town and a picture of a windmill, and he brings a light in the darkness to his home for the first time.

Recommended for: with a strong message of self-reliance and a happy ending, this is a safe book for anyone from upper-middle-school to a grandmother.

Okimono Kimono

Almost more of an art book than a real story, one of the women of the CLAMP manga writing group puts together a beautiful collection of both original and traditional kimono. She relates her experiences in wearing kimono in regular life, as well as ways to modernize the style of dress while keeping them feminine and pretty.

Recommended for: most female manga readers would appreciate the art of this book, even if they'd never dress like this themselves.

The Immortal Life of Henrietta Lacks

Known by many aliases since her death, this is the story of the life and family of a poor black woman in Maryland. Treated at Johns Hopkins, the cancerous cells that eventually killed her opened the door to the study of human cells outside of the body. What follows is the history of her family, who never saw a dime of the money that their mother's cells made, the scientists who used her biological material without her consent, and a fascinating look at the fields of bioethics and medical patents.

Recommended for: fans of science, civil rights and biographies alike.

Good Women of China

China has one of the most controlled 'free' presses in the world. And yet, it's still much more relaxed than in decades past. In the 1980s, as radio was slowly able to show the country a more realistic view of itself, Xinran began a late-night call in show for women. Collected here are some of the most memorable stories from those years. Told in plain language, but with a journalist's ear for narrative, the lives of the women in this book will stay with the reader long after she closes the cover.

Recommended for: current events and history buffs, women's rights and civil rights activists, and anyone looking for poignant stories with a thread of hope woven within them.

So there it is. That should cover most of your shopping list. But again, as always, make sure to tuck that gift receipt into the front cover. Book readers are a wily bunch, and sometimes we read even the most obscure title without anyone knowing. 

Does a person have default ownership of their own genome?

Who owns the biological waste that gets left behind at hospitals and clinics every day? What, exactly, defines informed consent and when does it apply? Can an organism or a snippet of DNA be patented? How does this change when it's human DNA involved?

These topics, and many others, are tackled in Rebecca Skloot's The Immortal Life of Henrietta Lacks. Skloot was first introduced to Henrietta as a side-note in ah High School biology class.The HeLa line of cells was the first to be successfully cultured in a lab. This created a way for scientists to study how cells work outside of a human host. The ability to work with cells in this way paved the way for vaccines for polio and influenza and helped create some of the most popular drugs to fight cancer. It helped to found the study of chromosomes and DNA itself.


But what of the woman behind the cells?


The HeLa strain was discovered long before such things as 'informed consent' and HIPAA laws. Discovered in 1951 by a researcher at Johns Hopkins, it was cultured from a young black woman living outside of Philadelphia. She later died of the cervical cancer from which HeLa sprung, which metastasized throughout her body. She left behind five children and a legacy that would change science forever, but her existence as a person would be largely forgotten, even by her own young children.


Rebecca Skloot's journey to discover Henrietta Lacks takes her on a journey that she could hardly have imagined when she started out. Skipping through time, the book ventures from Henrietta's mother's upbringing in Lacksville to her youngest daughter's home. We meet the doctors and nurses who discovered the unique traits of her cells, the ones who put the cells to use curing and preventing a myriad of diseases, and the one young doctor who finally takes the time to explain to her children exactly how important the mother they didn't get to grow up with was to the world.


There's a host of failures on the parts of the medical community, society and the Lacks family shown here. Over and over, the doctors and researchers simply never too the time to explain to the Lackses what they were doing and why. In the 1950s, the Lacks children were never tested for the hearing deficiencies that doomed them scholastically. The family as a whole didn't see anything wrong with cousins marrying, probably causing a host of problems with Henrietta's first daughter and also possibly contributing to learning disabilities with her other children as well.


Even though the story skips through the decades, The Immortal Life of Henrietta Lacks is a quick, easy to follow read. While the story of the Lacks family is interesting, the legal and medical information is even more fascinating. The author touches on other patients who have had biological material that was considered useful by the medical field, the legal advances in protection patients' rights, and the history of the care of patients. In an age where GMO food is starting to make headlines and patents and copyrights are making it nearly impossible for scientists to do research, the issues addressed here will only become more and more important.


Highs:  Watching Henrietta's troubled youngest son finally be shown how important his mother is to the world.


Lows:  I wish there was more about the legal aspect of some of the issues raised here.


Verdict:  Simple enough for a reader without much of a science background, The Immortal Life of Henrietta Lacks is a fascinating ride through an aspect of medicine that most never see.


Further Reading:  The Man who Mistook his Wife for a Hat, The Family that Couldn't Sleep