Up@dawn 2.0

Friday, February 24, 2017

The Case Against Perfection

Couldn't find Nuland's How We Live (aka Wisdom of the Body) in Google Books for Tuesday, but here's a review*... and here's Sandel's book for Thursday.

* ...The work of Dr. Nuland is an important step toward the creation of a biomedically literate public that is able to influence policy on matters of biological importance. The lusty, comely muse that inspires him is many times preferable to the gaunt, chlorotic one that superintends the work of most textbook writers. Now and then she leads him through arid textbookish sands or into the treacherous bogs of metaphysics, where she makes him say that the human spirit is an adaptive response of the neuronal circuitry. So what? Professional philosophers have said as much: an ''epiphenomenon,'' a ''phosphorescence'' and the like. And they never rewarded us with the fascinating tales of surgical pitched battle that ''The Wisdom of the Body'' doles out generously, in every chapter.
==
Also of note: On Point Radio aired a program Wednesay featuring a Vandy doc talking about flu season and vaccination: Dr. William Schaffner, professor of preventative medicine in the department of health policy at the Vanderbilt University School of Medicine, where he is also a professor of medicine in the division of infections disease.

On Point - NPR (@OnPointRadio)
'If you haven’t been vaccinated, run do not walk and get vaccinated.’ Dr. William Schaffner wbur.fm/2lUSHKJ

The Nature Fix

A new book I've been enjoying, but a phenomenon we should all be concerned about: our species' increasing distance from direct and regular encounters with the natural world.



And for those of you who were amused by the provenance of Dolly the sheep's moniker, you might also be interested in Florence Williams's previous book: Breasts: A Natural and Unnatural History. 

And, may I also recommend:

Thursday, February 23, 2017

Termination of Pregnancy (Abortion).

Image result for abortion

Abortion is the ending of pregnancy by removing a fetus or embryo before it can survive outside the uterus. An abortion that occurs spontaneously is also known as a miscarriage. An abortion may be caused purposely and is then called an induced abortion, or less frequently, "induced miscarriage". The word abortion is often used to mean only induced abortions. A similar procedure after the fetus could potentially survive outside the womb is known as a "late termination of pregnancy".
The question of whether it is morally permissible or terminate the life of a fetus had led to a polarization of views into two camps; the right to life versus the women's right to choose.   
On one hand, reproductive choice empowers women by giving them control over their own bodies. The choice over when and whether to have children is central to a woman's independence and ability to determine her future. Supreme Court Justice Sandra Day O'Connor wrote in the 1992 decision in Planned Parenthood v. Casey, "The ability of women to participate equally in the economic and social life of the Nation has been facilitated by their ability to control their reproductive lives." Supreme Court Justice Ruth Bader Ginsburg wrote in her dissenting opinion in Gonzales v. Carhart (2007) that undue restrictions on abortion infringe upon "a woman's autonomy to determine her life's course, and thus to enjoy equal citizenship stature." CNN senior legal analyst Jeffrey Toobin, JD, stated that Roe v. Wade was "a landmark of what is, in the truest sense, women’s liberation." 
Image result for abortion
On the other hand, people say that life begins at conception, so unborn babies are human beings with a right to life. Upon fertilization, a human individual is created with a unique genetic identity that remains unchanged throughout his or her life. This individual has a fundamental right to life, which must be protected. Jerome Lejeune, the French geneticist who discovered the chromosome abnormality that causes Down syndrome, stated that "To accept the fact that after fertilization has taken place a new human has come into being is no longer a matter of taste or opinion. The human nature of the human being from conception to old age is not a metaphysical contention, it is plain experimental evidence."

References:
Alastair V. Campbell. Bioethics. The Basics. 2013 By Routledge.
http://abortion.procon.org/

Dolly the Sheep’s Fellow Clones

...Enjoying Their Golden Years

   
The four clones created from the same cell line as Dolly the Sheep. Scientists found that they aged as normally as sheep that were not cloned. Credit University of Nottingham
Dolly the Sheep started her life in a test tube in 1996 and died just six years later. When she was only a year old, there was evidence that she might have been physically older. At five, she was diagnosed with osteoarthritis. And at six, a CT scan revealed tumors growing in her lungs, likely the result of an incurable infectious disease. Rather than let Dolly suffer, the vets put her to rest.
Poor Dolly never stood a chance. Or did she?
Meet Daisy, Diana, Debbie and Denise. “They’re old ladies. They’re very healthy for their age,” said Kevin Sinclair, a developmental biologist who, with his colleagues at the University of Nottingham in Britain, has answered a longstanding question about whether cloned animals like Dolly age prematurely... (continues)
==
Why Clone Sheep?
 
...So why clone boring sheep in the first place? Twenty years ago, the goal wasn’t to create a copy of a super cool animal (although people do want to clone endangered ones). The goal was to create transgenic animals — those with foreign genes inserted into their genomes — that could be used to make stem cells or proteins to treat diseases. The original sheep cloners were working with a company that hoped to extract a human protein from sheep milk that would treat diabetes.
==
‘Bring Back the King,’ a Gung-Ho Guide to Resurrecting Species-
A book by the cell biologist and journalist Helen Pilcher cheerfully explores advances in cloning that could be used to revive departed species.

Capitalism and Big Pharma


WaPo source can be found here

There are few things that can inspire passion about Bioethics than a nearly 75-fold increase in the price of a drug designed to help dying children.

The drug in question is called deflazacort. It is designed to alleviate the suffering of those who have Duchenne muscular dystrophy, a fatal disease that significantly slows muscle growth, making those afflicted unable to walk in their childhood and teenage years, and often ending their lives as young adults.

Deflazacort was previously available outside the U.S. for $1,200 dollars a year. The company that bought the voucher providing exclusive sale rights for seven years, Marathon Pharmaceuticals, posted the new listing price at $89,000.

The company states possible advantages to this seemingly unethical move; the drug will be available to those who need it at little or zero out-of-pocket cost to the consumer- provided they have the proper insurance. Some users who couldn't afford the $1,200 out-of-pocket from other sources may finally be able to obtain the drug.

The problem is, of course, that not all of the 15,000 people in the U.S. who need the drug will qualify for the insurance required. There are other drugs that provide similar relief, but the article suggests that the alternatives aren't as effective and have more severe side-effects.

On the surface, this looks like yet another case of a pharmaceutical attempting to (legally) maximize profits by (unethically) setting seemingly arbitrarily high prices on their drugs. My questions are these: is this profiteering something we should expect from a pharmaceutical industry that works in a capitalistic environment? Does this profiteering have any benefits to those who need the drugs? How can this system be improved upon?

Word count: 286



Wednesday, February 22, 2017

Quiz -- Chap. 1 A Clone is Born for Thursday 2/23

Quiz is on the first 6 pages of chapter one.

Please use the Google Books link for Clone: The Road to Dolly.

1. Dolly was born in a shed down the street from?

2. What genetic material was used to create Dolly?

3. Who is the ethicist and founder of the Hastings Center that described the awesome power of cloning?

4. When did the field of bioethics emerge?

5. Ian Wilmut made it clear he abhorred the very idea of...?

6. What are the basic questions that have plagued humanity since the dawn of mankind?


Tuesday, February 21, 2017

Study Guide For Bioethics the Basics


Ch 1. What is Bioethics?
1.(T/F) Campbell's examples of bioethical questions include whether health care professionals must meet higher standards than businesspeople, the ethics of longevity via pharmacology, designer babies, human/animal hybrids, state paternalism, euthanasia, and environmental ethics.

2. Bioethics just means _______.

3. The _________ required that 'The health of my patient must be my first consideration.' (Hippocratic Oath, Geneva Code, British Medical Association, International Association of Bioethics)

4. What 40-year U.S. study denied information and treatment to its subjects?

5. What did Ivan Ilich warn about in Medical Nemesis?

6. Bioethics has expanded its focus from an originally narrower interest in what relationship?

7. Bioethics has broken free of what mentality?

8. (T/F) Campbell thinks caveat emptor is a good principle for governing the contractual clinical encounter between doctor and patient.

9. Do descriptive claims settle evaluative issues?
                                                                                                     
10. Name a bioethical website Campbell recommends.

Ch. 2 Moral Theories
1. (T/F) In the Mayor's Dilemma, one of the possible actions considered is to set an example of defiance.

2. Which theory has been dominant in bioethics and often used by many health professionals?

3. In deontological theory, what is the difference between hypothetical and categorical imperatives?

4. What ethical principle (and whose), in the name of rational consistency, absolute dutifulness, and mutual respect, "requires unconditional obedience and overrides our preferences and desires" with respect to things like lying, for example?

5. What would Kant say about Tuskegee, or about the murderer "at our door"?

6. What more do we want from a moral theory than Kant gives us?

7. What is the distinctive question in virtue ethics?

8. What Greek philosopher was one of the earliest exponents of virtue ethics?

9. Paraphrase the Harm Principle. Who was its author?

10. Name one of the Four Principles in Beauchamp and Childress's theories on biomedical ethics?

Ch.3 Perspectives
1. Chapter 3 begins by asking if our bioethical perspective ("vision") is skewed by _____... (a) cultural assumptions, (b) gender bias, (c) religious faith, (d) all of the above

2. What's the leading global cause of death among women of reproductive age?

3. (T/F) The "feminist critique" says bioethics has been dominated by culturally masculine thinking.

4. What ethical perspective did Nel Noddings (supported by Carol Gilligan's research) describe as the "feminine approach"?

5. What's a furor therapeuticus?

6. Does Campbell consider the outlawing of female genital mutilation culturally insensitive?

7. What's allegedly distinctive about "Asian bioethics"?

8. What western ethical preconception is "somewhat alien" in the eastern dharmic traditions?

9. What gives Buddhists and Hindus a "whole new perspective" on bioethical issues?

10. What does Campbell identify as a "tension in the Christian perspectives" on bioethics?

Ch.4 Clinical Ethics
1. (T/F) Dignity, respect, and confidentiality are among the aspects of the clinical relationship which emphasize the importance of trust. 

2. What (according to most recognized oaths and conventions) must always be the deciding factor guiding professional decisions? 

3. The idea that the doctor always knows best is called what? 

4. Is a diagnosis of mental illness grounds for establishing a patient's lack of capacity to render competent consent to treatment? 

5. What general principle allows breach of confidentiality? 

6. What term expresses the central ethical concern about "designer babies"? What poet implicitly expressed it?

7. Why have organizations like the WHO opposed any form of organ trading?


8. Besides the Kantian objection, what other major ethical issue currently affects regenerative medicine?


9. What does palliative medicine help recover?


10. What would most of us consider an unwelcome consequence of not retaining the acts/omissions distinction with respect to our response to famine (for example)?

Ch.5 Research
1. Name one of the basic requirements agreed upon by all codes devised to protect individuals from malicious research.

2. What decree states that consent must be gained in all experimentation with human beings?

3. Name one of four areas of research discussed in the book.

4. Which famous contemporary philosopher coined the term speciesism?

5. Name one of four R's used in international legislation pertaining to animal rights in research?

6. Dilemmas in epidemiological research illustrate what general point?

7. What did Hwang Woo-suk do?

8. What is the term for altering the numbers in a calculation to make the hypothesis more convincing, with no justification form the research findings for such members?

9. What categories of human enhancement does Campbell enumerate, and what does he identify as its "extreme end"?

10. What is the "10/90 Gap"?

BB6- Justice
1. What are the two major spheres of justice discussed by Campbell?

2. (T/F) Vaccination/immunization and restricted mobility are two of the measures used by preventive medicine to counter the spread of disease. 

3. Another name for the micro-allocation of health care, concerned with prioritizing access to given treatments, is what? (HINT: This was hotly debated and widely misrepresented ("death panels" etc.) in the early months of the Obama administration.)   

4. What "perverse incentive" to health care practitioners and institutions do reimbursement systems foster, as illustrated by excessive use of MRIs?

5. What is the inverse care law?   

6. What is meant by the term "heartsink patients"?

7. How are Quality Adjusted Life Years (QALYs) supposed to address and solve the problem of who should receive (for instance) a transplant?   

8. Who propounded a theory of justice that invokes a "veil of ignorance," and what are its two fundamental principles?   

9. Under what accounts of health might we describe a sick or dying person as healthy?

10. Name two of the "capabilities" Martha Nussbaum proposes as necessary to ensure respect for human dignity?

Monday, February 20, 2017

The Immortal Life of Henrietta Lacks: Quiz

Below is a link to a short video that summarizes The Immortal Life of Henrietta Lacks. In this video, the author, Rebecca Skloot, and the Lacks family are being interviewed about the woman behind the famous HeLa cells. The quiz this week comes from the video.

https://www.youtube.com/watch?v=j0AkJXI2Yxk

Quiz Questions:

1. Where is Henrietta Lacks' unmark grave located?
2. What age did Henrietta Lacks die and what did she die from?
3. What hospital did Henrietta receive her treatments?
4. Who was in charge of the cell culture at Johns Hopkins and was the first to culture the famous HeLa cells?
5. Name some of the many scientific and medical contributions that HeLa cells have been apart of.
6. How many years was the Lacks family in the dark about their mother's immortal cells?
7. Who does the family consider "the devil" in this entire situation, even though they claim they made absolutely no profit in the production of HeLa cell line.
8. Although Henrietta Lacks' cells have changed the face of scientific and medical research, her family still cannot afford ___________________.
9. What does the Lacks family think Johns Hopkins should do to honor Henrietta and her contribution to science?
10. After all that the family has been through involving these immortal cells, what does her son, Sonny, say that makes him feel good about his mother?

Discussion Questions:
1. If you were the family in this situation, would you fight for compensation and how would you do it? If not, would you seek recognition of your loved ones contribution to science?
2. George Gey misled the media when he did not correct an article about the lady behind HeLa cells was named Helen Lane or Henrietta Lakes. Gey defended his actions saying he wanted to protect Henrietta Lacks as a patient, however do you think Gey's true intentions were to keep the success of the HeLa cells from the family?
3. Many doctors of this era often used patients from the public ward for research. Since the patients from the public ward were treated for free, does this give doctors the right to perform research without consent or their knowledge as a form of payment?
4. Due to Henrietta Lacks treatment, she was left infertile. However, it was not until her treatment had started and therefore too late that she was told this information. If she had known this before her treatment, Henrietta may have chosen to not to continue the radium and radiation. Should a patient be able to deny treatment, if it means they are risking their life?
5. Johns Hopkins officials have worked with the Lacks family to develop a series of programs to recognize and honor Henrietta Lacks, including scholarships, annual symposia and an historical exhibit on the Johns Hopkins medical campus. However, do you think this is enough to correct the wrong that was done to Henrietta Lacks? The family does not. Here is a link of an article posted last week to the Baltimore Sun of Henrietta's oldest son, Lawrence, seeking more compensation.

http://www.baltimoresun.com/health/bs-hs-henrietta-lacks-johns-hopkins-20170213-story.html

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

Thursday, February 16, 2017

"Bioethics for Beginners" Quiz & Discussion Questions










Quiz (*Cases 8, 9, 11, 14)
      1. What has the potential to revolutionize medicine?
       
        2. What did pluripotent cells seem to be?
 
        3. In 2005, who reported that "integrity" received more hits than any other word in their
online dictionary?

        4. Who was fired for fabricating a dozen papers?

        5. At which university did inspectors find out that their research subjects were never followed up the see what was happening?

        6. Who set out on his ashram in western India on a 387-km trek to sea?

Discussion Questions (*Cases 1, 2, 6, 16-18)

  • Is it ethical for physicians/scientists to be "playing god"?
  • Are artificial intelligence and/or synthetic designs ethically correct? Even if they are used for scientific reasons?
  • When in a world where technology is advancing far more greater than dry paint on a wall, is it ethical for us humans to incorporate technology within our bodies, let alone our brains?
  • If the opportunity was given, would you edit yours and/or your child's genes?
  • As of today many enhancements are becoming more accessible. Should we use those enhancers to create the "perfect life", or shall we let our bodies do what is natural?
  • As crispr is on the rise and more "designer" babies are being designed. Are we encoding our genes for the better? 

Wednesday, February 15, 2017

Quiz Feb 16

Our reporting group's gone missing, apparently. Let's improvise a quiz on Bioethics for Beginners in the interim. Help me out please.

Alternative quiz-

1. Who coined the term "bioethics"?

2. What's a good sign of the health of bioethics?

3. What's TIGR?

4. To what danger does synthetic biology open the door?

5. What % of the American population believes in evolution?

DQ:

  • Reflecting on When Breath Becomes Air and Patient H.M., what can the field of Bioethics contribute to our understanding of and sensitivity to ethical issues concerning the premature end of life, the medical community's obligations towards stricken practitioners, and the consensual rights of mentally impaired patients?
  • Why do you think it took so long for Bioethics to become established as an independent discipline? Did (or do?) medical professionals consider themselves fully capable of monitoring and policing themselves?
  • Should medical professionals be more aggressive in educating the public about the core intellectual commitments of medical science


Sunday, February 12, 2017

Patient H.M. Quiz and Discussion Questions

















Quiz

1. Burckhardt states that “doctors are different by nature,” falling into two distinct categories. Under which of the two natures does Burckhardt consider himself to belong?

2.Walter Freeman experimented with the full battery of shock treatments, but he was never satisfied. Why?

3. What did Freeman name the new field of psychiatric surgery?

4. What are the root words that make up the word “lobotomy” and how are they significant to the surgery?

5. As a general rule, when Freeman performed a lobotomy, what was the simple strategy to which he adhered?

6. After studies had been performed upon primates, what was the suspected outcome of removing the uncus and what was its purpose?

7.What happened to patient D.M.’s demeanor immediately after her uncotomy, the term Scoville used to describe the procedure?

8.What was ironic about the effect of the extensive accidental damage to patient I.S.’s behavior compared to the lesioning of the uncus in Scoville’s other four patients?

9.What question was Scoville trying to answer when he removed a total of twenty-five grams of brain tissue from one of his patient’s?

10.What section of the brain did Scoville suction from patient A.Z. that produced a “positive” result, and what were the immediate negative side effects?


Discussion Questions:

  • Walter Freeman, the inventor of the lobotomy, looked for signs that his treatment helped people. He visited with his patients after their procedures, took before-and-after photos, and generally found adequate (for himself) confirmation that his patients were better off post-lobotomy. How easy do you think it is to fall for these kinds of self-fulfilling prophecies, to only see what you want to see?
  • There was an imbalance in the number of male and female lobotomies, due to women being expected to behave in a specific way. How do gender roles still affect modern healthcare and medicine?
  • Part of the motivation for lobotomizing so many patients was the overcrowding of asylums, a problem the wealthy, with access to private asylums, did not face. Because of this, lobotomies were more prevalent among the poor. What’s your opinion on social class dictating the quality of care?
  • Scoville referred to interesting cases, like a dwarf with misfiring adrenal glands that he studied, as “material” he could work with. Does the study of unique human cases to advance scientific understanding necessitate reducing them to being a means to an end? Is there any way to do human experimentation without violating Kant’s ethics?
  • Freeman wanted to create a lobotomy that anyone could do, so that they could be more widespread. This is a gross example of choosing quantity over quality. What kind of balance do you think is healthy in medicine, when it comes to quality and quantity?
  • The patients upon whom lobotomies were performed could hardly be said to have been consenting. But because of their mental state, their doctors did not value their consent. Issues regarding mental health make the process of consent murky. How would you decide if the doctor really does know best?
  • Health vs. wellbeing: patients post-lobotomy were more docile and accepted by society, but their quality of life was irrefutably less. With this in mind, should healthcare professionals focus more on the physical conditions of a patient or the mental and emotional conditions?
  • At the Institute of Living, a private mental asylum, the author’s grandmother was subjected to regular electric shocks in order to ‘cure’ her. Because the Institute’s residents were growing increasingly fearful, the head of the asylum tried to change the name of the treatment from ‘shock’ to ‘sleep’, as it induced a brief coma. Do you believe simply changing the name of the treatment was the solution to the issue or was there something faulty about the treatment as a whole?