Ethics & Bioethics

1. Ethics & Bioethics

2. What is Bioethics? • Ethics is a field of study that looks at the moral basis of human behavior (“Why do we act as we do?”) and attempts to determine the best course of action in the face of conflicting choices (“How do we decide what to do when people disagree about a complex issue?”). It is a key component of living within a society in a civilized way. • Bioethics is a subfield of ethics applied to the life sciences. The discipline of bioethics helps us, as a society, make decisions about how best to use new scientific knowledge, how to make policy decisions regarding medicines or treatments, and how we should behave with each other. It explores ethical questions such as: • “How should we decide who receives organ transplants?” or, “Should a terminally ill patient be allowed to end his/her life with physician-prescribed medication?”

3. What is an Ethical Question? • Ethical questions often involve the words “ought” or “should,” implying a difficult decision must be made. • There are several alternate solutions, none of that is without some challenging or problematic aspect. • They contain conflicting moral choices and dilemmas, and the underlying values of the people involved may clash. • They have no right or wrong answer which satisfies all parties, but better or worse answers based on well-reasoned justifications.

4. What is an Ethical Question? • Not all questions with the word “should” are ethical questions. For example, “Should I bring my umbrella today?” does not meet the other criteria. • There are different types of questions, each having different characteristics. In addition to ethical questions defined above, there are questions pertaining to law, to science, to personal preference, to one’s culture or religion.

5. What is an Ethical Question? Pick out the ethical questions from the following list of questions. • a) Is it legal to sell human kidneys in the United States? • b) How does a kidney function inside the body? • c) What does my religion say about whether or not it is acceptable to donate a kidney? • d) Should individuals who donate a kidney choose who their organ should go to? • e) What type of diet allows for the best athletic performance? • f) Is killing someone always illegal? • g) Should people select the sex of their child in advance? • h) Are same-sex marriages constitutional? • i) What is the most appropriate way to worship? • j) Do kidneys taste good?

6. What is an Ethical Question? • Questions d & g are ethical questions, as they fulfill the criteria listed on Slide 3

7. What is an Ethical Question? • identify which type of question they represent. Legal, Scientific, Religious/Cultural, & Personal preference • a) Is it legal to sell human kidneys in the United States? • b) How does a kidney function inside the body? • c) What does my religion say about whether or not it is acceptable to donate a kidney? • d) Should individuals who donate a kidney choose who their organ should go to? • e) What type of diet allows for the best athletic performance? • f) Is killing someone always illegal? • g) Should people select the sex of their child in advance? • h) Are same-sex marriages constitutional? • i) What is the most appropriate way to worship? • j) Do kidneys taste good?

8. What is an Ethical Question? • Legal questions ask what the law says about a particular issue. Questions a, f, and h are legal questions. • Scientific questions can be explored through scientific inquiry and observation. They rely on empirical and measurable evidence. Questions b and e are scientific questions. • Religious/Cultural questions ask what would be in line with a particular belief or practice, or the common practices of a particular culture. Questions c and iare religious/cultural questions. • Personal preference questions relate directly to the speaker and are often modified by cultural bias. Question j is one of personal preference. • [Note: Questions may be of more than one type, and other types of questions also exist.]

9. Pandemic Flu What type of question the following is: • “Who should be saved during a flu outbreak when there is not enough life-saving vaccine available for everybody?“ • What is the criteria for an ethical question to see that it is, indeed, an ethical question.

10. Pandemic Flu • Pass out Student Handout 1.1—Pandemic Flu! You have 5 minutes for to read the scenario and individually make your choices about the distribution of the vaccine. • Pay close attention to how they are making their decisions.

11. Pandemic Flu • Who should receive the vaccine? • How did you decide?

12. Pandemic Flu • In small groups, spend about 5 minutes discussing your answers, filling out your tables. You do not need to come to consensus, but need to understand where there are differences in viewpoints and opinions.

13. Who got the vaccine? • Woman who thinks she is six weeks pregnant • Recently orphaned two-year old • Nurses’ aide who works at a nursing home • Senior citizen who has 15 grandchildren • Thirteen-year-old twins • Doctor • Elementary school teacher • Mother and son; the mother is refusing treatment so her son will be treated

14. Who got the vaccine? • “For those of you who chose to vaccinate the doctor, how did you decide?” • “Did anybody choose not to vaccinate the teacher? How did you decide?”

15. Who got the vaccine? • Approach 1: Save the Youngest. In choosing this, students are maximizing the life span for the greatest number of people. • Approach 2: Draw Straws (or any randomization technique). This option values fairness. • Approach 3: Save the Weakest. This option considers the special needs of vulnerable populations. • Approach 4: Save the Most Useful. Saving someone who has special knowledge and/or may be able to save others benefits a larger number of people. • Approach 5: Respect Relationships. Honoring the dignity of human beings includes acknowledging their relationships.

16. Who got the vaccine? • These approaches reflect societal standards or codes of conduct that we often rely on when faced with difficult decisions or ethical questions. We will be exploring these in greater detail throughout the unit.

17. The Need for Facts • When considering any ethical question, it is important to examine the facts available, and assess what additional information is needed. In the pandemic flu scenario, students had very little information from which to make difficult decisions. In most cases, more information may be gained through research or study. • “What are the facts of this case?” and discuss what is known. • Define the “unknowns” in a case, as very few real-life situations will supply all the facts for all of the people involved. Eventually, a decision must be reached in the absence of a complete set of facts.

18. additional facts influence decision-making • The following facts to add to the pandemic flu scenario. • What if...? • a) The senior citizen is primary caretaker for eight of her grandchildren. • b) The mother refusing treatment is in her 60s. The son is in his 40s. • c) The doctor is a podiatrist. • d) The woman who thinks she is pregnant has been married to the orderly for about a year. They have no children. • How, or if, these additional facts changed their decisions.

19. additional facts influence decision-making • If you changed their minds about who should receive the vaccine, did the decision still fit one of the approaches? Are there other approaches that should be added to the list? • Approach 1: Save the Youngest. In choosing this, • students are maximizing the life span for the greatest number of people. • Approach 2: Draw Straws (or any randomization technique). This option values fairness. • Approach 3: Save the Weakest. This option considers the special needs of vulnerable populations. • Approach 4: Save the Most Useful. Saving someone who has special knowledge and/or may be able to save others benefits a larger number of people. • Approach 5: Respect Relationships. Honoring the dignity of human beings includes acknowledging their relationships.

20. Closure • Ethical questions arise whenever individuals, with their own values and moral codes, interact within a larger community and a decision must be made about conflicting choices. • Science clearly has ethical implications. Offer the following examples of ethical questions (not for discussion, merely as illustration): • Should we allow embryos left over from in vitro fertilization clinics to be destroyed for stem cell research, if they would otherwise be discarded? • Should human clinical trials be conducted in populations that may not be able to afford the final medication, even if that population benefits from the trial?

21. Closure • These are real-world, complex, engaging ethical questions. By learning how to recognize an ethical question, assess the facts, listen to different viewpoints, and make a reasoned judgment about a course of action, you gain experience in critical thinking, and grow in your understanding and respect for other points of view.In your lifetimes, you will be confronted with many ethical issues related to science—an understanding of bioethics and decision-making will help you make well-reasoned and informed choices.

22. Homework • Find a news article that highlights the larger societal and ethical implications of science. You should identify and write down an ethical question pertaining to that news topic or issue, and be prepared to share it with the class.

23. Head to Head: The NFL & Brain Injury • Over the past few years, concussions suffered by NFL players have been in the news. Many high profile football players-- superstars like former Philadelphia Eagles running back Brian Westbrook and Washington Redskin's running back Clinton Portis-- have been sidelined by severe head injuries. Although severe head trauma and brain injury have gotten much attention in the media, efforts to minimize these injuries have lagged. The NFL has only recently begun taking steps to protect its players in response to a torrent of criticism.

24. Background on Chronic Traumatic Encephalopathy and Tau Protein • This video from Time.com illustrates the troubling research gathered by Bedford Medical Center Neuropathologist Ann McKee. After studying 12 brains of former football players in the last two years, Dr. McKee found evidence of neurodegeneration. Each brain shows apparent signs of repeated trauma, which is the only cause of a condition known as Chronic Traumatic Encephalopathy (CTE). CTE is a disease that has been found to lead to depression, loss of judgment, inability to control impulse, rages, and memory loss and can ultimately result in dementia. What's worse, these symptoms are not immediately apparent and can emerge up to 10 years after one stops playing football.

25. As Dr. McKee finds, with every accumulation of brain trauma there is an increased effect on tau protein in the brain. Tau protein is a microtubule-associated protein (MAP), which play a large role in microtubule stability. Microtubules transport nutrients and molecules within cells of the brain. Similarly, in Alzheimer's disease, tau is altered chemically, and begins pairing with other tau threads, becoming tangled. These altered tau structures collapse causing microtubules to disintegrate and the cells to die. • This deterioration of tau protein appears in the brain as small black specks. In areas of the brain that have experienced repeated damage, entire sections can become stained or discolored, turning brown or black. In cross-section slides of the brain Dr. McKee displays the difference between the brain of a healthy person with no evidence of degeneration, a football player with obvious presence of degeneration, and a boxer with extreme levels of degeneration. The healthy person's slide is white, the football player's slide is brown, and the boxer's slide is close to black.

26. Video • http://highschoolbioethics.med.nyu.edu/briefs/head-to-head

27. Intro Images • http://webdoc.nyumc.org/nyumc_d6/files/highschoolbioethics/Alzheimer_Tau.jpg • http://webdoc.nyumc.org/nyumc_d6/files/highschoolbioethics/Boxer_Brain.jpg

28. Recent Trends in Biomedical Research: CTE & the NFL • What's more troubling about Dr. McKee's studies is the relationship between CTE and the NFL. Former Tampa Bay Buccaneer and Philadelphia Eagles lineman Tom McHale was among the athletes' brains she studied. McHale died in 2008 at the age of 45 from a drug overdose likely linked to the symptoms he suffered from CTE. In a journal, McHale wrote that he felt he was losing his mind and had become addicted to painkillers; changes that were said to be highly out of character. Dr. McKee said McHale's brain showed, "tremendous neurodegeneration." • "[...] What we have seen in all of these players [...] is a trauma-induced disease. It is caused by trauma. And so, I don't think there is any question about what has caused the disease in these players," Dr. McKee said in a testimony before a House of Representatives hearing held by the judiciary committee In October 2009 about her research on CTE. "None of my colleagues have ever seen a case of CTE without a history of head trauma." 

29. Recent Trends in Biomedical Research: CTE & the NFL • A survey given by the Associated Press in November 2009 showed approximately 32 of the 160 NFL players surveyed, 20 percent, replied that they have hidden or downplayed the effects of a concussion. Half said they have had at least one concussion and 50 players, roughly 38 percent, missed playing time due to head injury. According to Pittsburgh Steelers linebacker James Farrior, "It's just a natural reaction for you to fib a little bit and not give all the doctors all the information, because you want to go out there and play. You don't want them to come back and tell you you're not able to play." The common perception of concussions is similar to Atlanta Falcons center Todd McClure's, "If you come out [of a game], you're seen as ‘soft.' That's the way it is." • While players may hide their concussions in order to play now, they may not be able to hide from them in the future. In a recent study by the University of Michigan, commissioned by the NFL, 6 percent of retired NFL players over the age of 50 had been diagnosed with Alzheimer's, dementia or another memory-related disease. This study shows the much higher level of diagnoses in NFL players than the less than 2 percent finding in U.S. men of a similar age who did not play professional football.

30. What Is Being Done and Is It Enough? • In 2007 the NFL mandated neuropsychological baseline tests and retests for players before they can return to play after sustaining head trauma. The NFL now prohibits players from returning to a game from which they were knocked unconscious and also established a hotline to report pressure to play against a doctor's advice. The hotline was created after New England Patriots coach Bill Belichick convinced former linebacker Ted Johnson to play too soon after a concussion, after which he sustained a more severe injury. While the creation of these programs is a good start, the 2009-2010 season was the first in which independent neurologists were on the sidelines to diagnose players who suffered head injuries. • Dr. Richard Ellenbogon, one of the NFL's new co-chairmen of the Head, Neck and Spine Medical Committee, has outlined a new six-point plan that the NFL will use to address head trauma. The NFL plans to build a database to log every concussion for each player, study the effects of concussions on retired players, improve equipment, notably helmets, advocate for athletes in all sports, advance the understanding of concussions, and revise and continually improve the return to play criteria for athletes.

31. What Is Being Done and Is It Enough? • Most recently, the NFL has released a new concussion poster to its players. It discloses more information about the effects of repeated head trauma than in previous information released to its players and acknowledges for the first time, the serious and long-term harm that concussions cause. The poster includes a statement from the CDC saying, "traumatic brain injury can cause a wide range of short- or long term changes affecting thinking, sensation, language, or emotions." The poster continues, "These changes may lead to problems with memory and communication, personality changes, as well as depression and the early onset of dementia. Concussions and conditions resulting from repeated brain injury can change your life and your family's life forever."

32. Concussion • http://webdoc.nyumc.org/nyumc_d6/files/highschoolbioethics/Concussion-NFL.jpg

33. How do we Protect our Future Athletes? • It's no secret that adolescents idolize athletes. They want to be like them, play the same sports. But how do we prevent them from making the same mistakes our current athletes make? How do we protect a generation of young athletes who still celebrate the current warrior mentality of the NFL? • NFL commissioner Roger Goodell has lobbied for states to adopt legislature similar to Lystedt's Law, which prevents a child from returning to play too soon after suspicion of a concussion and promotes concussion education and awareness. Concussions are not uncommon to football played at all levels. In fact they can be even more devastating to someone whose brain is still developing, as injuries can take longer to heal. In 2006, Zackary Lystedt was 13 years old when he suffered permanent brain damage. He collapsed during a junior high football game from brain hemorrhaging after returning to play 60 seconds after sustaining severe head trauma. He remains in a wheelchair. • A major issue with concussions is they can be difficult to diagnose and many student athletes return to play too soon. This is a problem across many high schools as they lack the necessary medical personnel and equipment to examine athletes properly. In 2009, TIME cited a study showing that 41% of concussed athletes in 100 high schools across the country returned to play too soon, under the guidelines set out by the American Academy of Neurology. A concussed athlete who returns to play before their brain is properly healed is more susceptible to sustaining an even worse injury known as second-impact syndrome-- a condition in which the brain is vulnerable to another, often more severe, injury. 16-year-old Jaquan Waller died during a game two days after sustaining brain trauma in practice. A medical examiner said "neither impact would have been sufficient to cause death in the absence of the other impact." Waller was cleared to play by their team's certified athletic trainer.

34. How do we Protect our Future Athletes? • Making the proper diagnosis of a concussion and removing an athlete from play are hard enough when the symptoms are there. To make matters worse, a true danger lies in the inability to diagnose someone who demonstrates no symptoms and may even be unaware themselves that they have a concussion. A recent Purdue University study monitored 21 high school football players for an entire season. Four of the players were not diagnosed with a concussion but suffered from brain injury equal to if not worse than players who had been diagnosed with a concussion and removed from play. Researchers unexpectedly found these 4 undiagnosed athletes to have had a significant decrease in routine cognitive tests as well as decreased brain activity associated with memory. This was the case for recently deceased Cincinnati Bengals' wide receiver Chris Henry, 26. An autopsy revealed that his brain had signs of degeneration-he had CTE. But the most troubling aspect of this finding is that Henry reportedly never sustained a concussion in his collegiate or professional football career. You do not have to have a history of concussions to develop CTE. • Chris Henry's case might seem shocking but another common misconception is that an athlete must lose consciousness in order to sustain a concussion-this is not true. In fact, it is not always the severity of the hit that can cause brain trauma that can lead to CTE. The mere accumulation of hits can be just as devastating. Here are some scary figures to think about: a high school lineman receives between 1,500 - 1,800 sub concussive hits each season. Someone who plays four years of high school football can experience 6,000 to 7,200 sub concussive hits. Playing 4 years of college football additionally doubles the amount of hits-to 12,000 to 14,400 hits to the head before a player has the opportunity to play in the NFL. Not only does a player suffer from habitual head trauma while they play, but the longer they play, the further they advance their career, the players around them get bigger, the speed of the game gets faster, and the hits get harder. This is why the NFL should not expand to an 18 game season. • High school athletes are taught to play through broken fingers, torn hip flexors; they are conditioned to play with pain. Why would a headache be a concern? The NFL needs to be proactive in changing the mentality of a game for an entire generation of young athletes. Over competitive coaches must be taught not to force players onto the field prematurely. Parents and trainers must encourage kids to report their symptoms. Athletes must be taught to care for themselves above playing a sport that lacks honest, responsible, self-governance.

35. Review Questions • Which do we value more: watching sports, like football games, or the safety of athletes? • Where is the technology to save the multi-million dollar athlete? • Should we reform the game of football? Can we? • Is letting players play football any different than letting your friend drive drunk? Are fans the enablers? • Is risk for serious injury part of what makes football, football? Propose a set of rules or policies that both protects players but also maintains the 'essence' of football.