The Case Against Perfection (Excerpts, quiz, and discussion questions)

The Case Against Perfection by Michael Sandel

QUIZ QUESTIONS:

     Chapter 1: The Ethics of Enhancement

     1. What was attempting to conceive a deaf child compared to? (pg. 3)

     2. What does Julie receive a clone of? (pg. 4)

     3. What do breakthroughs in genetics promise will soon be treatable and preventable? (pg. 5)

     Chapter 3: Designer Children, Designing Parents
     4. In the words of the theologian William May, parenthood teaches _____________. (pg. 45)
     5. The deepest moral objection to enhancement lies in _____________________. (pg. 46)
     6. The drive to master genetics disfigures the parent-child relationship and deprives the parent
         of what? (pg. 46)
     7. Health is not the kind of good that can be _______. (pg. 48)

     Chapter 4: The Old Eugenics and the New
     8. Who coined the term eugenics and called for it to be "introduced into the national
         conscience, like a new religion"? (pg. 63)
     9. What was the "chief issue of birth control" according to the feminist Margaret Sanger?
         (pg. 65)
     10. Which state adopted the first law providing for the forced sterilization of certain groups of
           people? (pg. 65)

DISCUSSION QUESTIONS:

     1. If you could design your child to have every advantage, would you? Why or why not?
     2. Is it morally wrong to design a child to be deaf?
     3. Do you think being deaf could be considered a culture or a disability?
     4. How do you think genetically enhancing one's children influences the parent-child
         relationship?
     5. How should parents balance accepting love and transforming love?
     6. Do you think that the American eugenic movement would still exist if Hitler hadn't taken it to
         such a violent extreme? What differences do you think we would see in America if eugenics
         had continued with the momentum it had before the Nazis brought it into an unfavorable
         light?

Exam Essay: Bioethics & Research: Genetic Research.

As what Campbell mentioned that without conducted scientific research the whole enterprise of bioethics would be a waste of time. Research must always be high quality in order to produce knowledge that is applicable outside of the research setting with implications that go beyond the group that has participated in the research.  Furthermore, the results of your study should have implications for policy and project implementation. Unfortunately, not all researchers and scientists abide by the principle that the truth shall be told all the time (C. P. Snow). For instance, the dishonesty of the South Korean stem cell researcher Hwang Woo-suk. In 2004-2005 he published claims that he had succeeded in creating the first cloned human embryo and had derived a stem cell line from it. These claims were shown to be totally false. 
What I am trying to say is that research is something that really important to any type of studies. Research is the systematic investigation and study of materials and sources to establish facts and reach new conclusions, so it shapes people's understanding of the world around them. Through research findings, psychologists, sociologists and scientists are able to explain individuals' behaviors, including how people think and act in certain ways.
Campbell discussed four types of research: clinical trails, the use of animals in medical research, genetic research, and epidemiological research.
Genetic Research: 
Can bioethics ever represent too much of a good thing? Where exactly is the line between too little and too much protection for patients in genetic counseling, research, and testing? 
To better understand the potential impact of paternalism, consider the case of Joy Simha. Simha successfully battled breast cancer in the mid-1990s, and in 1996, she chose to take a genetic test to determine whether she carried the breast cancer gene BRCA1. Simha knew that having the gene would increase her chances of future breast or ovarian cancer by about 50%, so she decided that if the test was positive, she would have her remaining breast removed as a means of cancer prevention. Simha's doctors, however, refused to give her the results of the test. In doing so, the doctors were following guidelines recommended by prominent bioethics authorities at the time, which stated that the outcome of a genetic test should not be divulged to a patient if a clear treatment was not available. The aim of this recommendation was to prevent patients from experiencing undue stress if diagnosed with an untreatable condition.
Paternalism is not just a factor in the rights of individuals who wish to undergo genetic testing; it can also hinder genetic research. Recently, the number of studies aimed at correlating genetic status with disease vulnerability has increased, and simultaneously, so have concerns regarding participation in this research, because such participation could create the risk of genetic discrimination and emotional distress. Typically, bioethicists concentrate on determining whether the existing protection of human subjects in genetic studies is adequate, instead of whether research data will be compromised if stronger protective guidelines are implemented (Reilly et al., 1997; Wilcox et al., 1999). 
References:
Alastair V. Campbell. Bioethics. The Basics. By Routledge. P 116-120

Bailey, R. Warning: Bioethics may be hazardous to your health. Reason, August/September, http://www.reason.com/news/show/31104.html (1999)

Reilly, P. R., et al. Ethical issues in genetic research: Disclosure and informed consent. Nature Genetics 15, 16–20 (1997) (link to article)

Wilcox, A. J., et al. (1999). Genetic determinism and the overprotection of human subjects. Nature Genetics 21, 362 (1999) (link to article)

For you personally, how does science fit into your belief system? Does it have any influence on your beliefs, or are they two completely separate entities?

I am a firm believer in both science and religion. They both explain our origin in two different ways. Science explains our origin of existence to be The Big Bang Theory… the physical world. Religion deals with the other end of the spectra… the spiritual world. Many people try to separate the two, like they could not possibly have anything to do with each other. I don’t think it’s that simple to have a black or white answer to the question. I do think that it is quite above our understanding, and that maybe we are trying to be a part of something that is beyond our capabilities and capacities to even consider thinking about in depth.

The human body, itself is a complex machine. It is constantly adapting and changing to fit the needs of our environment. How can something so incredibly complex develop from something so simple without the help of a divine being. Even the furthest back that we can trace of a single celled life form again lends back to the idea above of where did this come from? How could it just appear from nothing?

 There is also the argument that God could not have created the world in just a few days. This excerpt enumerates this idea:

In examining the scientific oppositions of religious creation theories, the most prominent idea regarded by scientists to be ludicrous in religious concepts is that it is impossibly against all laws of science for the universe to have been created in the matter of days that are suggested by most religious creation theories. For instance, in Christianity, it is believed that universal existence came to be over a process of six days, a theory which is disregarded by scientists globally to be physically impossible (George, 2007). However, if one was to take into account the context in which days is used, the scientific improbability is without substance as the days set out in religious contexts may not refer to the value of time which we give to a 'day' in modern times.

 

I believe everything comes from something and that everything happens for a reason. No matter if that reason is the universe, fate, or whatever you want to call it, I think there must be a divine creator.

 

“Science is not only compatible with spirituality; it is a profound source of spirituality. When we recognize our place in an immensity of light‐years and in the passage of ages, when we grasp the intricacy, beauty, and subtlety of life, then that soaring feeling, that sense of elation and humility combined, is surely spiritual. So are our emotions in the presence of great art or music or literature, or acts of exemplary selfless courage such as those of Mohandas Gandhi or Martin Luther King, Jr. The notion that science and spirituality are somehow mutually exclusive does a disservice to both.”
― Carl Sagan, The Demon-Haunted World: Science as a Candle in the Dark

How We Live Presentation Quiz, Reading Materials, and Discussion Questions

Quiz Questions:

1. What does Nuland say that more people will base their decisions about a belief system on, instead of facts?
2. What is the Greek root word that Mitosis is derived from, and what does it mean?
3. What are the differences between genotype and phenotype?

4. Where did Margaret Hansen have her surgery?
5. Where was her aneurysm located?

6. Who discovered the circulation of blood?
7. William Harvey wrote, " This is the only reason for the motion and beat of the heart," What was he trying to do when he said this?

8. Was man's knowledge of his body acquired in a smooth continuum?
9. What are the three critical instruments in the 19th century that redirected the path of medical progress away from clinical artistry and toward the goal of scientific objectivity?
10. How many cells did Robert Hooke estimate was in one cubic inch of cork?

Discussion Questions:

• For you personally, how does science fit into your belief system? Does it have any influence on your beliefs, or are they two completely separate entities?
• What are your own thoughts on destiny and free will? Is your life predetermined by your genetics (or perhaps something else?)
• In today's society where do you feel like emotion comes from, the heart or brain?
• A quote from page 243, Is it right for doctors to have this God mentality?
• Why do you think that new discoveries were "stifled" for about 1400 years?
• What do you think of the concept "every cell originates from a previously existing cell"?
• What do you think would be the best way to keep the majority of people who are not specialist in the scientific fields up to date with new advancements and concepts relating to the field?

Presentation Quizzes

When Breathe Becomes Air Quiz:

1. What type of cancer was Paul diagnosed with?

2. Paul said severe illness wasn’t life altering, it was ____________.

3. Why were the doctors worried about pneumonia?

4. Instead of intubation, what could Paul choose?

5. What was Paul’s wife’s way of recreating home while in the hospital?

Patient H.M. 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?

Bioethics for Beginners:

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?

The Immortal Life of Henrietta Lacks Quiz:

1. Where is Henrietta Lacks' unmarked 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?

A Clone Is Born Quiz:

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?

Bioethics and Health and Human Rights.

Recent decades have seen the emergence of two new fields of inquiry into ethical issues in medicine. These are the fields of bioethics and of health and human rights. Dr D Benatar is a professor of philosophy and head of the Department of Philosophy at the University of Cape Town in Cape Town, South Africa. In his article about "bioethics and health and human rights, he argues that bioethics, partly because it has been construed so broadly, suffers from quality control problems. Dr. Benatar also argues that the field of health and human rights is superfluous because it does nothing that cannot be done by either bioethics of the law. 

Ethical questions in medicine and the life sciences are the subject of not one but two relatively new academic fields: “bioethics” and “health and human rights”. Although moral questions about the ethics of medicine and related areas have been asked for as long as people have asked questions about ethics, it is only within the last few decades that new fields devoted specifically to such questions have arisen. The growth of these fields has stimulated further attention to important moral questions in medicine and biology. 

Health and human rights, as an academic field, does not seem to do anything that cannot be done either by bioethics, if the rights in question are moral rights, or by the law if the rights are legal rather than moral. Moreover, it is characterised by weaknesses that, unlike those of bioethics, cannot be overcome.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563274/ 

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.

An old post... another... another

Also worth a look: Sandel's Adam Smith Lecture; What Money Can't Buy; The Public Philosopher; Conversation with A.C. Grayling

==

* ...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)
3/1/17, 7:38 PM '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:

Termination of Pregnancy (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." 

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

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?

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?