Showing 1 - 10 of 127 annotations tagged with the keyword "Medical Testing"

Three Identical Strangers

Wardle, Tim

Last Updated: Nov-08-2018
Annotated by:
Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The world is a big place – 7.4 billion people and counting. As much as we all enjoy the game of finding our doppelganger in a crowd, there probably isn’t anyone in the world who is exactly like us. With a genetic code of over 3 billion base pairs, of which there are innumerable permutations, we would be hard pressed to find a clone of ourselves even if the world had 7 trillion people. The exception is if you were born with an identical sibling. But then again, you would know if you had a twin. Wouldn’t you?

The documentary Three Identical Strangers tells the unbelievable story of Bobby Shafran, Eddy Galland, and David Kellman – three identical triplets who were separated at birth and serendipitously reunited at the age of 19. The film takes us through the circumstances of their reunion, highlighting the brothers’ instant rapport over their similarities and the ensuing fame resulting from the public fascination with their extraordinary story. It began as a euphoria-filled saga complete with talk show interviews, movie cameos, and even a successful restaurant which they called “Triplets”.

The honeymoon phase ended in horrific fashion once the parents of the respective siblings began asking questions as to why the brothers were separated in the first place. A journalist who had been investigating the triplets’ adoption agency, Louise Wise Services, helped to uncover the details of an elaborate study performed by a child psychiatrist named Dr. Peter Neubauer. In this study, each brother was placed into a home which had another adoptive sister, and specifically assigned to a family of lower, middle, and upper-class backgrounds. While the exact details of the study objective remain unknown, it appears that the study was trying to determine whether psychiatric illness was correlated more strongly with genetics or with developmental environment; this is referred to colloquially as a “nature vs. nurture” experiment.

The implications were earth-shattering. The brothers struggled to cope with the realization that they had been marionettes in some sort of sick experiment, with Dr. Neubauer pulling the strings the whole time. Even worse was the fact that there were possibly several more identical siblings with the same story who were deprived of their biological soul mate, all at the behest of Neubauer and his associates. In fact, other sets of identical siblings were eventually made aware of the experiment, and did have the chance to meet, albeit many years after their birth.

The triplets also learned that their biological mother had serious psychiatric problems – hence their inclusion in the study. All three brothers had behavioral difficulties as adolescents, and it was distressing to consider whether their issues may have been exacerbated by the separation anxiety they experienced upon being separated at birth. In particular, Eddy suffered from worsening episodes of bipolar disorder throughout his life. In 1995, at the age of 33, he committed suicide. He is notably absent for the duration of the documentary, with Bobby and David narrating much of the film. Today, they are still trying to uncover the particulars of Dr. Neubauer’s study, but the research records remain under seal at Yale University until 2066. They may never know the full extent of what was done to them and why.

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
                                                                                              
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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How to Visit a Healer

Brown, Jeanette

Last Updated: Sep-08-2017
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

In this wonderful short story, author Jeanette Brown describes a woman’s first visit to an alternative medicine healer. The woman has a persistent cough. Unhappy with the "five seconds per visit your doctor lavishes on you after your two-hour wait in his sterile lobby," she has taken her yoga instructor’s advice and made an appointment with a tall, olive-skinned man whose voice is "low and soothing" and whose manner is slow, relaxed, and personal.The woman, whom the healer diagnoses as "the roadrunner, a busy fidgety type," alternates between interest, skepticism and dismay. She cracks jokes; he doesn’t laugh. He recommends diet, exercise, no caffeine, and colon cleansing. She mentally rolls her eyes until, his hands massaging her foot, she feels her stomach lurch, a twinge in her armpit and begins to think of her body as "a human pinball machine." Whenever her self-defensive, rational, traditional beliefs almost propel her off the exam table and into her clothes, the healer "nails" her, reading her personality and her lifestyle exactly.Well into the visit, she realizes she hasn’t coughed once. Then, when she’s the most relaxed, incense wafting, his hands kneading all tensions from her back, her mind registering "this is bliss," her esophagus becomes blocked. Sitting up, she coughs, and the healer confronts her. "You have something to say," he insists, and she counters with "You expect me to believe all this mumbo-jumbo?" He tells her she swallows her feelings, and when she coughs again a "feather? A butterfly?" escapes from her mouth and disappears.When the healer pats her back and asks her to cough once more, she can’t. Taking her hands, he declares her "cured." At the story’s end, still not quite able to admit that this strange physician has helped her, yet knowing that he has, the woman struggles to count out his fifty dollar fee, finally dropping a handful of bills onto his bench, "hoping he won’t be offended by a tip."

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Very early in this memoir, Dr. Sandeep Jauhar refers to an essay Sachin Jain and Christine Cassel published in JAMA (2010) that categorizes physicians as knights, knaves, or pawns. His take: “Knights are motivated by virtue…Knaves are selfish…Pawns are passive.” (p.7) Jauhar rides into medical practice as a knight in shining armor on a white horse after years and years of training. Would he be able to hang onto his knighthood?  

The book is divided into three parts—Ambition, Asperity, Adjustment—bookended by an introduction and epilogue. Jauhar’s disillusionment with American health care is his primary theme, and it connects these three parts:  

As a young adult I believed that the world was accommodating, that it would indulge my ambitions. In middle age, reality overwhelms that faith. You see the constraints and corruption. Your desires give way to pragmatism. The conviction that anything is possible is essentially gone. (pp. 5-6)  

Jauhar is comprehensive and unsparing in accounting for the sources of his disillusionment and his fall from knighthood. He was vulnerable to disillusionment from the start having been pushed by his parents in into medicine against his desires. His mother “wanted her children to become doctors so people would stand when we walked into the room,” (p. 21) and his father said that in medicine he “would have respect, wealth, and influence.” (p.133) He put off medical school for as long as he could by first getting a PhD in experimental physics. Finally, 19 years after first starting college he became a practicing cardiologist, though not without almost bailing out of medical school for a career in journalism as he writes in his first memoir, Intern (annotated here).  

Jauhar's first position was as a hospital staff member heading up a heart failure unit. As hospital staff he wasn’t paid as much as physicians in private practice. This differential wasn’t a problem by itself, but because the salary was insufficient for the lifestyle he sought and his wife—a physician also—urged him to provide, “I want nice things for us: a home, safe cars, good schools. They may seem trivial to you, but they are not to me.” (p. 75) This pressure was made worse by his older brother earning twice the income while working at the same hospital as an interventional cardiologist, and as well by all the other physicians in private practice who lived in big houses and drove fancy cars.  

The story then veers into a period when he sheds his knighthood for knavery. Jahaur joins a pharmaceutical company speaker bureau that supports a particular product and quits over his concern that the product may have been more toxic than first thought. Guided by his brother who says, “As much as we hate to admit it, patients are a commodity,” (p. 92) He takes positions with various private physician practices that operate more like procedure mills than health care providers.  

Jauhar does not do well as a knave, realizing “I had made a Faustian bargain. Having my eyes opened to the reality of contemporary medical practice had been painful. Now I had to make a choice. Continuing on this path was leading to ruin.” (p. 257) And so he tells of his adjustment, which for him is finding an “uneasy equilibrium” (p. 258) by continuing to work with private practices, just not as much, and spending more time with his family. Thus, in the end, Jauhar does not a return to full knighthood and becomes something closer to a knight with knavish tendencies or a knave with knight-like qualities.

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Psychobook

Rothenstein, Julian

Last Updated: Nov-30-2016
Annotated by:
Glass, Guy

Primary Category: Literature / Literature — Secondary Category: Visual Arts /

Genre: Photographs with Commentary

Summary:

The subject of Psychobook is psychological tests, both classic tests and newly created ones. Oversized, with more pictures than text, it is truly an art book.    

Psychobook begins with an introduction by Lionel Shriver, a journalist and novelist, which proves to be a very personal indictment of psychological testing.  There follows a more even-handed historical essay by Oisin Wall, a curator at the Science Museum in London.    

The bulk of Psychobook is comprised of photographs of tests and archival material related to tests.  For example, along with intelligence tests designed to screen potential immigrants, we find images of new arrivals being tested at Ellis Island.  Likewise, we see beautifully reproduced Rorshach inkblots along with pictures of Rorshach and older inkblots that may have inspired him.
 The Thematic Apperception Test (TAT) is a projective test in which subjects respond to images with their fantasies.  Here we see the 1930s originals cut out of magazines alongside updated images especially commissioned for this volume. Each is provocative in its own way.  As an added bonus, a series of photographs of psychotherapists in their offices from the 1930s to the present is interspersed with the content on psychological testing.     

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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Blood Feud

Sharp, Kathleen

Last Updated: Dec-01-2015
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: History

Summary:

Beginning in 1992, Mark Duxbury and Dean McClellan are high-flying salesmen for Johnson and Johnson, Ortho branch – happily promoting the drug Procrit, (or Epogen -- erythropoietin), for anemia. The drug stimulates the bone marrow to produce more red blood cells. Developed by fledging company Amgen, it was licensed to Ortho for specific uses. Their careers take off, and they earn bonuses and stature, peaking in 1993. Soon, however, Duxbury realizes that he is being encouraged to promote the drug for off-label uses and in higher doses that will enhance sales and profits through kickbacks. He soon realizes that the drug is not safe when used in these situations. People are dying because their unnaturally thickened blood results in strokes and heart attacks.

He raises objections with his employer. For voicing concerns he is ostracized and then fired in 1998. Along with the stresses of his work, the financial difficulties and emotional turmoil, Duxbury’s home life is in tatters; his marriage falls apart and he worries about his daughter Sojourner (Sojie). He develops multiple health problems, including sleep apnea and dependency on drugs and alcohol.

Enlisting the help of the famous lawyer Jan Schlictmann (A Civil Action
), whistleblower Duxbury launches a qui tam lawsuit in 2002 against his former employer. This is a civil action under the False Claims Act, which can offer cost recovery should the charges prove warranted. The lengthy process is still going. The last ruling issued in August 2009 allowed the case to proceed. But Duxbury soon after died of a heart attack in October 2009 at age 49.

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Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

This thoughtful essay from the author of The Emperor of All Maladies expounds on information, uncertainty, and imperfection in the medical setting. The author recalls witnessing a difficult operation when he was a medical student. The attending surgeon admonished the operating room team, "Medicine asks you to make perfect decisions with imperfect information" (p.5). This essay is constructed around that idea as the author shares three personal principles that have guided him throughout his medical career.
     Law One: A strong intuition is much more powerful than a weak test. (p. 22)
     Law Two: "Normals" teach us rules; "outliers" teach us laws. (p. 38)
     Law Three: For every perfect medical experiment, there is a perfect human bias. (p.54)

He views the medical world as a "lawless, uncertain" place and stresses that biomedicine is a "softer science" than chemistry or physics. Clinical wisdom, in his opinion, is imperfect, fluid, and abstract whereas the knowledge base of other basic sciences is concrete, fixed, and certain. He laments, "My medical education had taught me plenty of facts, but little about the spaces that live between facts" (p. 6).

His own "laws" of medicine are actually laws of imperfection. Clinical diagnosis can be thought of as a "probability game" where human bias creeps into the process. And ultimately common sense trumps pure statistical reasoning. Woven into the discussion are considerations on a variety of topics - children with autism, Heisenberg's uncertainty principle, genomics, radical masectomy, and randomized, double-blind studies. Nods to Lewis Thomas (The Lives of a Cell: Notes of a Biology Watcher), Thomas Bayes (Bayes' Theorem), and Johannes Kepler (Kepler's Laws of planetary motion) fit in nicely with the thrust of the treatise.


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Welcome to Cancerland

Ehrenreich, Barbara

Last Updated: Sep-28-2015
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

A “drive-by mammogram” leads the writer, Barbara, to a biopsy of a suspicious breast lump. She awakes from the fog of anesthesia to hear the surgeon’s bland remark: “Unfortunately, there is a cancer.” Welcome to Cancerland, a place where her identity is displaced by the vast implications of the diagnosis, another operation, and arduous months of chemotherapy. What works for her own peace of mind has little to do with the trappings of pink-ribbon sentimentalism in the survivors groups.

Barbara resorts to her knowledge of cell biology, asks to see her own tumor under the microscope, and contemplates the meaning of visualizing the malignant cells even if she does not believe the exercise can help her. She dissects the rank commercialism and denial in the survivor movement: let me die of “anything but the sticky sentimentalism in that Teddy Bear.” She decries the claims that cancer therapy makes better skin, better hair, and better people, with better bodies, especially when an implant on one side subtends a cosmetic procedure on the other.

Posting these thoughts on a chat line, she discovers that most women berate her attitude and suggest she needs a psychiatrist. But one dying woman agrees with her distress, and writes of having cancer, “IT IS NOT OK.” Admitting feminists can be found in the “survivor” community, Barbara faults its underlying tone for being coercively optimistic, infantilizing, and insulting to the dying and the dead. She is angry. Very angry, and her “purifying rage” spares no one: doctors, support groups, feminists, drug companies, and the Cancer Society. Nevertheless--and in keeping with her earlier work--she credits the women’s movement with helping to rid the world of three medical evils: the radical Halsted mastectomy, the practice of proceeding to mastectomy from biopsy without waking up the patient, and high dose chemotherapy.

Two disturbing ironies bring the essay to a close. The first, is the possibility that mammograms may not be saving or even prolonging lives, even as they detect cancers; they make women dwell in Cancerland for longer and cause too many “unnecessary” biopsies. The mammogram is a ritual, she says. The second irony lies in the role of the pharmaceutical industry which fosters the pink power movement –the ribbons, the teddy bears, the marathons-- while manufacturing the expensive poisons that seem to have anticancer side effects. These same companies, she argues, have also manufactured carcinogenic pesticides that pollute the environment. Having profitably poisoned women into having breast cancers, they continue to profit from poisons of chemotherapy.
She faults both the “cult” of the survivors movement and the American Cancer Society for their “unquestioning faith” in these imperfect instruments of action.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Matthew McCarthy begins his memoir of medicine internship year at Columbia University with a glimpse into his first rotation, surgery, as a Harvard medical student. He had exhibited a talent for surgery and liked it – an affinity compatible with his dexterity as a minor league baseball player and sense of team spirit. The reader meets some of McCarthy’s memorable mentors, and, although he opts to not pursue surgery as a career, McCarthy’s eye for seeking productive apprenticeships with talented housestaff and faculty allow him to guide the reader through a year of drinking from the firehose, also known as internship. Medical training is full of liminal experiences, and internship is one the most powerful and transformative.  

McCarthy’s eagerness to do well, both by his patients and by his medical colleagues and team, and his candor with revealing his mental and bodily responses to the stress and strain of the responsibilities of internship, make him an adept guide. For example, he has gulped an iced coffee and is churning at the bit to take care of a new admission on his first day of call in the cardiac care unit (CCU). His resident, called Baio in the book, tries to tell McCarthy to take it easy. But McCarthy notes, “Our orientation leaders, a peppy group of second- and third year residents, had instructed us to exude a demented degree of enthusiasm at all times, which wasn’t difficult now that my blood was more caffeine than hemoglobin.” (p 15) The previous chapter had ended with a cliffhanger – a patient life would be placed in danger because neophyte McCarthy misses the importance of a key clinical finding – what and how that plays out will wait until McCarthy guides us through the terror and exhilaration he feels as he begins his CCU rotation.  

McCarthy has a good sense of the ironic: the huge banner advertising the hospital reads “Amazing Things are Happening Here!” Indeed, not only for patients and families, but also for the many trainees and workers. We watch McCarthy successfully perform his first needle decompression of a pneumothorax; he is allowed to attempt it as he notes that he watched the video of the procedure. But unlike the video, he needs to readjust the needle several times and add on some additional tubing and water trap, which makes the scenario more true-to-life than a fictionalized ‘save.’ The author ends the chapter with congratulations from resident Baio: “Well done… Amazing things are indeed happening here.” (p 244) As McCarthy’s year continues, many things do happen, including an infected needle stick, telling bad news to a new widow, and developing a friendship with a longterm hospital patient waiting for a heart transplant.

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