NWABR Bioethics 101 5.13
NWABR Bioethics 101 5.13
NWABR Bioethics 101 5.13
Jos Lopez, MD
Executive Vice President for Research
Puget Sound Blood Center
COVER DESIGN
Cover produced by Laughing Crow Curriculum LLC
GRAPHIC DESIGN
Clayton DeFrate Design
COPYEDITING
Polly Freeman, MA
1 Credits
5 Curriculum Overview
38 Possible Answers for STUDENT HANDOUT 3.3 Facts, Values, and Stakeholders
55 STUDENT HANDOUT 5.1 Case Study: The Time and the Place?
69 Scoring Rubric
Lesson One: Lesson Two: Lesson Three: Lesson Four: Lesson Five:
Introduction Principles of Finding the Making a Strong Putting it All
to Bioethics Bioethics Stakeholders Justification Together
A. Science as Inquiry
Abilities necessary to do scientific inquiry.
Lesson One: Lesson Two: Lesson Three: Lesson Four: Lesson Five:
Introduction Principles of Finding the Making a Strong Putting it All
to Bioethics Bioethics Stakeholders Justification Together
Comprehension and Collaboration, Grades 9-10
1. Initiate and participate effectively in
a range of collaborative discussions
(one-on-one, in groups, and teacher-
led) with diverse partners on topics,
texts, and issues, building on others
ideas and expressing their own clearly
and persuasively.
a. Come to discussions prepared,
having read and researched
material under study; explicitly
draw on that preparation by
referring to evidence from texts
and other research on the topic
or issue to stimulate a thoughtful,
well-reasoned exchange of ideas.
b. Work with peers to set rules for
collegial discussions and decision-
making (e.g., informal consensus,
taking votes on key issues,
presentation of alternate views),
clear goals and deadlines, and
individual roles as needed.
c. Propel conversations by posing
and responding to questions that
relate the current discussion to
broader themes or larger ideas;
actively incorporate others into the
discussion; and clarify, verify, or
challenge ideas and conclusions.
d. Respond thoughtfully to diverse
perspectives, summarize points
of agreement and disagreement,
and, when warranted, qualify
or justify their own views and
understanding and make new
connections in light of the
evidence and reasoning presented.
National Governors Association Center for Best Practices, Council of Chief State School Officers. (2010). Common Core State Standards for English Language Arts & Literacy
in History/Social Studies, Science, and Technical Subjects. Washington D.C.: National Governors Association Center for Best Practices, Council of Chief State School Officers.
Lesson One: Lesson Two: Lesson Three: Lesson Four: Lesson Five:
Introduction Principles of Finding the Making a Strong Putting it All
to Bioethics Bioethics Stakeholders Justification Together
Scientific Practices
Asking questions.
Developing and using models.
Analyzing and interpreting data.
Constructing explanations.
Engaging in argument from evidence.
Obtaining, evaluating, and
communicating information.
Crosscutting Concepts
Systems and system models.
Stability and change.
Core Ideas: Life Sciences
LS 1: From molecules to organisms:
Structures and processes.
LS 2: Ecosystems: Interactions, energy,
and dynamics.
D: Social interactions and group
behaviors.
Committee on Conceptual Framework for the New K-12 Science Education Standards, National Research Council. (2011). A Framework for K-12 Science Education:
Practices, Crosscutting Concepts, and Core Ideas. Washington D.C.: National Academies Press.
INTRODUCTION
Values signify what is important and worthwhile. They
Students are introduced to the characteristics of an serve as a basis for moral codes and ethical reflection.
ethical question and learn to distinguish ethical questions
Morals are codes of conduct governing behavior.
from other types of questions, such as legal or scientific
They are values put into practice as actions.
questions. Students then identify an ethical question and
participate in an ethical dilemma involving the distribution Ethics provide a systematic, rational way to work
of a scarce resourcea flu vaccineduring a flu outbreak. through dilemmas and to determine the best course
Students are asked to determine the best course of action of action in the face of conflicting choices.
in the face of conflicting choices, while examining the
underlying themes that serve as a basis for their reasoning.
Lastly, students experience how relevant facts influence
decision-making. LEARNING OBJECTIVES
Students will be able to:
KEY CONCEPTS
Identify the characteristics of an ethical question, and
Ethical questions are characterized by the following: distinguish an ethical question from other types of
o They often involve the words ought or should, questions.
implying a difficult decision must be made. Recognize that reasoned judgment is valuable when
o There are several alternate solutions, none of which is making difficult decisions.
without some challenging or problematic aspect. Understand how facts contribute to decision-making.
o They contain conflicting moral choices and dilemmas, and Reason through a difficult ethical scenario.
the underlying values of the people involved may clash.
o They have no right or wrong answer that satisfies all CLASS TIME
parties, but better or worse answers based on well- One class period of 55 minutes.
reasoned justifications.
TEACHER PREPARATION
Make copies of Student Handout 1.1Pandemic Flu!, one
per student.
LESSON 1
Part I: What is Bioethics? Reminds student that not all questions with the word
Activity Time: 5 minutes should are ethical questions. For example, Should
1. Tell students that the class is embarking on a week-long I bring my umbrella today? does not meet the
study of bioethics. Define both ethics and bioethics for other criteria.
students, as follows:
4. Tell students that there are different types of questions,
Ethics is a field of study that looks at the moral basis
each having different characteristics. In addition to ethical
of human behavior (Why do we act as we do?) and
questions defined above, there are questions pertaining
attempts to determine the best course of action in the
to law, to science, to personal preference, to ones culture
face of conflicting choices (How do we decide what
or religion. [Note: These additional types of questions are
to do when people disagree about a complex
further defined in Step #7.]
issue?). It is a key component of living within a
society in a civilized way. 5. Ask students to pick out the ethical questions from the
following list of questions. It may be helpful to project the
Bioethics is a subfield of ethics applied to the life
questions for all to see.
sciences. The discipline of bioethics helps us, as a society,
make decisions about how best to use new scientific a) Is it legal to sell human kidneys in the United States?
knowledge, how to make policy decisions regarding b) How does a kidney function inside the body?
medicines or treatments, and how we should behave with
c) What does my religion say about whether or not it is
each other. It explores ethical questions such as:
acceptable to donate a kidney?
How should we decide who receives organ
d) Should individuals who donate a kidney choose who
transplants? or, Should a terminally ill patient be
their organ should go to?
allowed to end his/her life with physician-prescribed
medication? e) What type of diet allows for the best athletic
performance?
2. Tell students that they will begin the unit by delving into
an ethical discussion, after defining what constitutes an f) Is killing someone always illegal?
ethical question. g) Should people select the sex of their child in advance?
you decide?
Approach 5: Respect Relationships. Honoring the b) The mother refusing treatment is in her 60s. The son is
dignity of human beings includes acknowledging their in his 40s.
relationships. c) The doctor is a podiatrist.
18. Tell students that these approaches reflect societal d) The woman who thinks she is pregnant has been
standards or codes of conduct that we often rely on married to the orderly for about a year. They have no
when faced with difficult decisions or ethical questions. children.
We will be exploring these in greater detail throughout
23. Discuss with students how, or if, these additional facts
the unit.
changed their decisions.
Should we allow embryos left over from in vitro ADDITIONAL RESOURCES FROM
fertilization clinics to be destroyed for stem cell AN ETHICS PRIMER
research, if they would otherwise be discarded?
From the Lesson Strategies section:
Should human clinical trials be conducted in
General Discussion Background: Suggestions for
populations that may not be able to afford the final
Conducting Classroom Discussions
medication, even if that population benefits from
the trial? Awareness: Ethical Questions
LESSON 1
Read the scenario and come to a decision on your own. When you and your group are finished, discuss your answers
in a group. Be prepared to explain how you reached your decision. The purpose of this exercise is to practice
using reasoning skills in a difficult, hypothetical situation in which there is no clear answer.
Scenario
A severe worldwide outbreak of a flu caused by a respiratory virus has occurred. It threatens everybody in your
communityhealthy young people as well as the very old and very young. You cannot count on receiving federal
assistance during this pandemic. This deadly flu has already killed people in your community and exposure to the flu
is expected. Anybody who has not been vaccinated will succumb to the flu and most likely die. Effective vaccines
exist in limited supply. There are enough vaccines to treat more than half of the community members during the first
wave of the pandemic.
There are ten people who require the vaccine at this time and you can only treat six.
The four individuals who do not receive the vaccine will most likely die.
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Who Should Receive the Vaccine? How Did You Decide?
d) Parent not helping child with her homework. 33. Leave the Principles Poster with the three bioethical principles
(Maximizing Benefits/Minimizing Harms) posted in the classroom for the remainder of the unit.
e) Parent being fair between siblings. 34. Distribute Student Handout 2.1 The Principles of
(Justice) BioethicsBackground. Give students 3-5 minutes to
f) Parent not being fair between siblings. read through the principles individually.
(Justice)
In addition to the Principles of Bioethics introduced here,
21. Have students from groups a and b present their skits.
ethicists use a number of different ethical perspectives
22. Ask students, What code or standard is being honored and theories to defend their positions, including:
(or not)? Students may say respect or right to choose Moral Rules and Duties
LESSON 2
principle Justice.
o Physics
o Chemistry
o Psychology
o Math
o Biology
LESSON 2
Cut out the following phrases indicating interactions between a parent and child.
Student groups (a f) will create and improvise 30-second role-plays. Give the students
about 2 minutes to prepare their scenes. Do not tell the students the name of the
principle they will be illustrating.
RESOURCE
Principle
Respect for Persons
This principle values the inherent dignity and worth of each person, as well as respecting individuals and their
autonomy. It means not treating people as a means to an end.
Autonomy emphasizes the right to self-determination and acknowledges a persons right to make choices,
to hold views, and to take actions based on personal values and beliefs. It emphasizes the responsibility
individuals have for their own lives. The rules for informed consent in medicine are derived from the principle
of respect for individuals and their autonomy. In medicine, there is also a special emphasis on privacy,
confidentiality, truthfulness, and protecting individuals from vulnerable populations.
Justice
This principle relates to Giving to each that which is his due (Aristotle) or Fairness. It dictates that persons who
are equals should qualify for equal treatment, and that resources, risks, and costs should be distributed equitably.
Other Considerations
Some ethicists also add Care, which focuses on the maintenance of healthy, caring relationships between
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individuals and within a community. The principle of care adds context to the traditional principles and can be
used alongside them.
Additional considerations include Duties & Responsibilities or taking actions that reflect personal Virtues.
Historical Context
The historical basis for these principles goes back thousands of years. We find references to fairness and justice
in Aristotles writings. The Hippocratic Oath entreats physicians to First, do no harm. The Nuremburg Code
was created in response to World War II atrocities in which prisoners were used for experimentation without their
consent. The Code helped to define Respect for Persons and created guidelines for conducting ethical human
clinical trials. The principles were further refined in the 1970s in a document outlining guidelines for research
called the Belmont Report. The advent of new life-saving technologies such as the first dialysis machines and
organ transplants created a need to establish policy regarding the fair distribution of scarce resources, and to
understand how to balance the benefits and burdens of this new research.
ETHICAL
QUESTION
JUSTICE OTHER
What would be fair? Are there any other ethical
considerations?
How can we treat others
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equitably?
INTRODUCTION MATERIALS
Students read a case study about Dennis, a 14-year-old boy Materials Quantity
who has been diagnosed with leukemia. The doctors treat
Student Handout 2.1Principles of 1 per student
the leukemia with chemotherapy, which dramatically reduces
Bioethics (handed out in Lesson Two)
the number of Denniss blood cells. Dennis, however, refuses
Student Handout 3.1Denniss 1 per student
life-saving blood transfusions because they conflict with
Decision
his faith. Students identify an ethical question to explore,
and consider how the Principles of Bioethics (Respect Student Handout 3.2Values 1 per student
for Persons, Maximizing Benefits/Minimizing Harms, Definition Table
and Justice) relate to the case. Students then identify the Student Handout 3.3Facts, Values, 1 per student
stakeholdersthe people or institutions that are affected by and Stakeholders
the outcomeand work in small groups to clarify stakeholder Possible Answers for Student Handout 1 per student
values, interests, and concerns. Stakeholder groups then 3.3Facts, Values, and Stakeholders
present their positions to the class as a group.
An answer that satisfies one stakeholder group may NOTE TO THE TEACHER
conflict with the values of another group or individual;
this conflict is often at the heart of an ethical dilemma. In discussing the case, students may focus on Denniss
religious position and either vilify or support the religion
Not all of the Principles of Bioethics will be equally
itself. Please be clear that the purpose of analyzing the case
relevant to any one situation.
is not to evaluate the religion in any way. The underlying
matter is one of autonomy, not religion. Does Dennis have
LEARNING OBJECTIVES the right to make independent choices regarding his own
Students will be able to: life, including which religion to practice?
CLASS TIME
One class period of 55 minutes.
1. If students have not already read the case study for 10. In small groups, have students brainstorm a list of
homework after Lesson Two, have students read Student stakeholders. Tell students not to write on their handouts
Handout 3.1Denniss Decision. yet, since there is space for only four stakeholders and
more than four exist. How many stakeholder groups can
2. As a class, refer to the Principles Poster (and Student
they think of?
Handout 2.1 from Lesson Two) to identify the Principles
of Bioethics that are most prominent in the case. Student 11. As a class, list the stakeholders on the board.
Handout 2.2Focus on the Principles, which was 12. Have each group share their additions to the whole class
assigned as homework in Lesson Two, will also be useful. list. The list of stakeholders could include:
3. Briefly address the main ethical considerations for this Dennis
case. This case highlights a conflict between Respect
His aunt
for Persons, specifically the issue of autonomy (whether
Dennis has the right to make choices and take actions His parents
based on his personal values and beliefs) and Maximizing The doctors
Benefits/Minimizing Harms (the doctors are in a position
to do good by providing medical treatment). Their religious community
Dennis Lindberg had already survived more than most young people by the time he reached the age of 14. Born
to drug-addicted parents, Dennis tried to ignore the needles in the toilet and his moms pale skin and strangely
constricted pupils. He was too scared to ask her if she did drugs. Throughout his childhood, Dennis moved
constantly and rarely attended school, often being left with neighbors while his parents were getting high.
He had the chance to make a fresh start, however, after his dad was jailed for drug possession. In an effort
to save him from suffering while they got their lives back on track, Denniss parents sent Dennis to live with
his aunt and gave her guardianship of the boy. Over the next four years, Dennis flourished in his aunts home.
He began attending school regularly, made friends, and found comfort in regular meetings of the religious
community to which his aunt belonged. Dennis soon expressed interest in joining the congregation and did so.
He participated fully in the life of the congregation, and spent many Saturdays witnessing door-to-door about
the evils of drugsthe effects of which had touched him personally.
Then, at the age of 14, Dennis received grim news. He had leukemia and would need immediate treatment to
survive. Dennis was diagnosed with acute lymphocytic leukemia (ALL), a type of cancer that affects blood or
bone marrow. ALL is the most common type of leukemia in children under age 15, and doctors gave Dennis a
70% chance of full recovery if he underwent chemotherapy and repeated blood transfusions over the course
of three years. In chemotherapy, patients are treated with drugs to kill the affected cells. Because bone marrow
produces blood cells, chemotherapy causes a dramatic decrease in the number of blood cells the patient has. To
make up for the lost blood cells, the patient is given blood transfusions. Without the transfusions, the patient
will die. Dennis was prepared to begin chemotherapy immediately, but recognized that blood transfusions
conflicted with his faith.
Denniss religious faith teaches that blood is sacred in Gods eyes, that the soul or life is in the blood. Because of
this, members of Denniss faith believe it is wrong to eat blood or to eat any animal that has not been properly
bled. Likewise, they believe blood transfusions are wrong and that if they receive blood they are breaking Gods
laws. Although blood transfusions are prohibited, the faith is not anti-medicine.
Dennis was clear with his doctors when they began chemotherapy that he would refuse blood transfusions. He
even threatened to pull out the IV if they attempted to give him blood, which meant that physical force would
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be required, not once, but repeatedly, as Dennis received ongoing treatment. His aunt agreed with his decision,
as did members of his congregation. When his biological parents found out, however, they were stunnednot
members of that religion themselves, they wanted doctors to do everything possible to save their son. Since giving
up custody of Dennis, his parents had completed drug treatment and were now sober. They felt they should have a
say in this life or death decision. As Denniss blood count dipped dangerously low, his doctors struggled with what
they should do, and an ethics board from the hospital was engaged.
Based on a factual story. Please see the Teacher Resource section for source information.
Value Definition
Altruism Caring for others without regard to yourself.
Assertiveness Being confident and knowing you deserve respect.
Autonomy Being free to guide and control yourself, and make your own choices.
Caring Feeling and showing concern for others.
Compassion Being deeply aware of and wanting to lessen the suffering of others.
Cooperation Working willingly with others to accomplish something.
Courage Ability to face danger, fear, and obstacles with confidence.
Diversity Respecting and wanting difference and variety.
Equality Believing that everyone deserves the same treatment.
Fairness Strictly following what you believe is fair and just.
Financial Security Having enough money to lead a secure and comfortable life.
Friendship Having a relationship based on mutual respect and good will.
Generosity Willingness and desire to give.
Helping others Doing good by directly helping others and acting in their best interest.
Honesty Acting in a straightforward and fair manner.
Humility Feeling that you are no better than other people.
Independence Being able to do things for yourself and be self-reliant.
Individual Potential Ability to contribute or make an impact in the future.
Lawfulness Following the rules of what is required in a given situation.
Love Feeling a deep, tender affection or attachment.
Loyalty Feeling devotion, attachment, and affection toward a person or idea.
Perseverance Being continuously steady in effort or belief.
Personal Happiness Feeling pleasure, satisfaction, or joy.
Personal Safety Being free from danger, risk, or injury.
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__________________________ ____________________________________________ ____________________________
If your stakeholder group alone were to make the decision, what would you choose? Why?
Dennis is 14 years oldstill a minor. Are there any other treatments for leukemia that dont require
blood transfusions?
His aunt has legal custody of him.
Why did the doctors begin chemotherapy if they knew Dennis
To treat leukemia, patients undergo chemotherapy. This kills
would refuse blood transfusions?
the diseased cells, but also kills off good blood cells made in
the bone marrow. Patients undergoing treatment for leukemia What is the relationship like between Dennis and his aunt? Dennis
will die without transfusions of healthy blood cells. and his biological parents?
Dennis would need transfusions for about three years. Does the hospital have a policy on blood transfusions and minors?
Maximizing Benefits/
Denniss biological parents They value the life of their son over his belief system. Minimizing Harms
They care for and love their son. Some Justice issues (Is it fair if
they have no voice?)
__________________________ ____________________________________________ ____________________________
RESOURCE
If your stakeholder group alone were to make the decision, what would you choose? Why?
NOTE TO THE TEACHER 1. Re-engage students with the case study Denniss Decision
by reminding them of the different stakeholder views
ABOUT ARGUMENTATION
presented in Lesson Three.
As students write their own well-reasoned justifications in the 2. Introduce additional information about the case:
next two lessons, they are honing their argumentation skills Doctors diagnosed Denniss leukemia a month before
by using evidence to support their claim to a position relating he needed his blood transfusion. He agreed to and
to a bioethical case study. This is an important practice in started chemotherapy but immediately refused the
science, and students are often encouraged to show how blood transfusions. The hospitals experience in similar
data support the claim. The types of data used to support situations was that patients who initially refused blood
ones claim when analyzing a case study may be different transfusions would eventually agreed to them after
from the types of data collected though conventional becoming very ill.
scientific inquiry, however. When using a socio-scientific
case study, data may refer to the scientific facts of the case, Denniss hospital room became a place for members of
the bioethical principles that apply to the case, or even the his religion to congregate, with up to 20 friends and
social context of the case. Student argumentation skills will family members staying with him around the clock.
also be supported when considering the perspectives, views, The hospital policy is to inform parents/guardians that
and interests of various stakeholder groups to help identify while the hospital will do everything it can to avoid
possible weaknesses in their own (or others) arguments. transfusions, it will not let a child die because he or she
needs blood. This policy is most often used for one-time
FRAMING THE LESSON transfusions in emergency surgical cases, such as after a
car accident.
The previous days lessons have led students to this point:
The hospital policy would be difficult to enact in
A decision must be made for Dennis, and strong reasoning
Denniss case. The treatment would require his full and
must be provided for that decision. Because writing a
on-going cooperation; in addition to complying with
thorough justification for an ethical decision can be difficult,
the repeated blood transfusions, he would need to take
students are introduced to the concept by reading six pre-
medications at home, come to follow-up visits, and
written justifications and using a decision chart to judge the
undergo frequent blood counts.
relative strengths and weaknesses of each justification. By
the end of this lesson, students should be able to build
Part II: What Makes a Strong Justification?
on the justifications provided and write their own,
Introduction
well-reasoned justification.
Activity Time: 20 minutes
8. Ask students whether I dont like it, Thats not the way 16. Allow this silent exchange to occur for a few minutes.
it should be done, or I just dont think it is right are good Have more paper available, as the debate may go on for
justifications, and prompt them to explain why or why not. several pages.
9. List the characteristics of weak justifications for all 17. After 5 or 6 minutes, stop the debate.
students to see.
18. Have students look over the written debate and find the
Weak justifications: strongest arguments the other person made.
Are based purely on subjective opinion. 19. Have students discuss with their partner what, specifically,
made the argument strong. Did it rely on facts from
Rely on an undefined feeling.
the case? Take the concerns of the stakeholders into
Cant be substantiated with facts or science. consideration?
Are based on a cultural bias that is not universal. 20. Elicit some responses from the whole class.
Are not relevant or logically linked to the facts of 21. Have students refer to the Principles Poster created in
the case. Lesson Two. Was their partners argument strengthened by
10. Ask students to offer other examples of weak giving voice to an ethical principle?
justifications. 22. Ask, What makes a strong justification? As a class,
11. Tell students that they will be debating what should be done develop the criteria for a strong justification.
in the case of Denniss Decision with a partner, and that they 23. List the characteristics of strong justifications for all
should keep in mind the characteristics of weak justifications students to see.
so that they can avoid them in their own arguments.
Strong justifications may include:
Part III: Take This! Take That! Silent Debate A clearly-stated position (claim) that relates directly
Activity Time: 15 minutes to the ethical question.
In this portion of the lesson, students take sides on Denniss Reference to important facts and science content of
Decision and participate in a silent debate to practice their use the case.
of reasoning. Because the debate is in written (silent) form, Reference to one or more Principles of Bioethics or
conversation cannot deteriorate into a shouting match. At the other ethical considerations.
end of the debate, students identify the strongest arguments
Consideration of how other people will be impacted
and justifications made, and analyze what makes them so.
by the decision.
12. Project a copy of Teacher Resource 4.1Take This! Take
LESSON 4
Part VII: Variations on the Story (Optional) Through the court system, the state and Dennis
Lindbergs biological parents attempted to force
38. Once students have come to a decision about the case
Dennis to receive blood transfusions. After hearing
and have justified their decision, have them consider
from Denniss parents, aunt, doctors, and social
the following variations to the story. Would any of these
workers, the judge ruled that Dennis was a mature
change their decision? Why or why not? Have students
minor saying, I dont believe that Denniss decision
discuss the following variations in pairs or small groups.
is the result of any coercion. He is mature and
What if understands the consequences of his decision.
The judge called the decision the most difficult of his
Dennis were younger than he is in this case? What if
career. Before the court decision was made, Dennis
he were 12? 10? 8 years old?
fell into a coma. He died soon after. This took place
Dennis were older than he is in the case? What if he at Childrens Hospital & Regional Medical Center in
were almost 18, but not yet legally an adult? Seattle, Washington in November, 2007.
Dennis was not religious at all, but simply wanted
his illness to run its natural course because that is
how life, in its most organic and raw form, works?
CLOSURE
Dennis were still under the legal care of his
39. Emphasize the importance of providing reasons for
biological parents?
taking a certain position, as well as making sure those
reasons are strong.
HOMEWORK
Ask students to finish writing their own justification using
Student Handout 4.3Your Decision and Justification.
SOURCES
Take This! Take That! Silent Debate contributed by Rosetta
LESSON 4
Students should form pairs and decide who will represent the FOR (YES) position and who will represent the
AGAINST (NO) position.
2. Note whether you are making an argument FOR or AGAINST the issue.
3. If you change the type of argument you are making, you may draw a line to separate your ideas. For example, the
first argument about school uniforms (below) is about individuality, and the second argument is about money.
Student 1: There should not be a school uniform because it does not allow
students to express their individual personality.
Student 2: Students are in school to learn, not to express their personality.
S1: Part of school is to figure out who you are, and lack of ability to express
personality does not help that process.
S2: Students learn to be like everyone else when it comes to fashion. There
should be lessons that help students figure that stuff out, not clothing choices.
S2: There should be a school uniform because it makes less obvious the
differences in how much money students have.
S1: Students know those differences anyway they compare shoes, accessories,
cars, homes, electronics, etc. Uniforms just become an additional expense for
families that are already struggling.
S2: It still decreases the biggest comparison factor name brands and variety of
clothing. Uniforms could be provided free to families that cannot afford them.
S1: Avoiding the problem wont help students learn how to deal with real-life
problems like how to deal with people of different economic
RESOURCE
Evaluate each justification using the decision chart found on Student Handout 4.2Elements of a Strong
Justification. If the necessary part of the justification is present (A DECISION, FACTS or STAKEHOLDER VIEWS,
for example) put a Y for yes in the box. If not, put an N for no in the box. You will go through example
A as a class, then complete B E individually.
A. No. The blood products he needs are medically necessary. Since his leukemia was treated with chemotherapy,
most of his blood cells have been destroyed. He needs blood transfusions to survive. In following the principle
Maximize Benefits for Dennis (to do no harm) the doctors are required to save his life.
B. Yes. The doctors probably dont know what theyre doing, and hell probably die anyway. People get sick in
hospitals all the time from diseases they didnt come in with. In his weakened state, he could easily get sick from
something else and die.
C. Yes. The principle Respect for Persons includes the idea of autonomy which allows a person to make decisions
about his or her own fate. Dennis is 14 years old, old enough to fully understand what it means to refuse blood
transfusions. He should make this decision and his wishes should be respected.
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D. The doctors should Maximize Benefits and do good by not allowing him to die. On the other hand, they
should respect his autonomy and his wishes. His parents gave guardianship over to the aunt, so their opinion
shouldnt matter. The aunt and the doctors should make the decision together.
E. No. It will be too emotionally difficult on his biological parents. They are now sober and just because they made
mistakes in the past, that doesnt mean that they should have to watch their son die. They probably thought that
giving custody to the aunt was temporary, and that they would get him back.
Read through possible justifications for Denniss Decision found on Student Handout 4.1. Evaluate
each justification (A E) using the following decision chart. If a justification contains the needed
element, write Y for Yes in the box. If not, write N for No.
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A logical explanation that connects the evidence
REASONING and LOGIC to the claim is provided.
For our purposes, the justification for the decision is more important than the position on the decision.
Read through possible justifications for Denniss Decision found on Student Handout 4.1. Evaluate
each justification (A E) using the following decision chart. If a justification contains the needed
element, write Y for Yes in the box. If not, write N for No.
For our purposes, the justification for the decision is more important than the position on the decision.
RESOURCE
You may refer to Student Handout 3.3Facts, Values, and Stakeholders if needed.
1. What is your position on this issue? Write out your claim in a complete sentence.
2. What is the factual content that can be used as evidence to support your position? This factual content should be
able to be confirmed or refuted regardless of cultural or personal views.
3. What are the views and interests of the individuals or groups affected by the decision that you think are most
relevant to your position?
HANDOUT
4. What ethical considerations can be included as evidence to support your position? (Respect for Persons, Maximize
Benefits/Minimize Harms, Justice)
6. Take the answers to Questions #1-5 and write a strong justification paragraph for your decision on the topic.
Make sure to use the evidence (such as the scientific facts and ethical considerations) in support of your claim in a
way that shows your reasoning
HANDOUT
INTRODUCTION MATERIALS
In this lesson, students consider the case of a young
Materials Quantity
doctor hired by a U.S. pharmaceutical company to test a
Student Handout 2.1The Principles of 1 per student
new antibiotic in Nigeria during a meningitis epidemic.
Bioethics (handed out in Lesson Two)
Students work through a Decision-Making Framework
in small groups, in which they identify the ethical question, Student Handout 4.3Justify The 1 per student
determine which facts are known or unknown, consider the Answer (from Lesson Four)
values of different stakeholder groups, generate possible Student Handout 5.1Case Study: The 1 per student
solutions, and then make and justify a decision about the Time and the Place?
case. This is a jigsaw exercise, in which students first meet in Student Handout 5.2Ethical Decision- 1 per student
like stakeholder groups to become experts in the values Making Framework
and concerns of that group. Teams are then rearranged Possible Answers for Student 1
into mixed stakeholder groups so that each new group Handout 5.2Ethical Decision-Making
has students from different stakeholder viewpoints. After Framework
sharing the views and values of each stakeholder group with Student Handout 5.3Elements of a 1 per student
their peers, groups work together to generate options for Strong Justification
solutions to the case study. Lastly, students come to individual
decisions about the case and write a thorough justification.
TEACHER PREPARATION
KEY CONCEPTS Make copies of the Student Handouts, one per student
A decision-making framework provides a structured format
for logical student thought. NOTE TO THE TEACHER
Difficult decisions can be reasoned through in a Although the case study presented in this lesson highlights
systematic way, even if the different solutions are not what might be considered a questionable action by a
without challenges for diverse stakeholder groups. pharmaceutical company, please note for students that
Not all of the Principles of Bioethics will be equally relevant we have all benefitted enormously from the drugs and
to any one situation. therapies developed by the pharmaceutical industry.
Pharmaceutical companies are regulated by the Food and
LEARNING OBJECTIVES Drug Administration (FDA). A number of regulations are in
place regarding appropriate actions and behavior in testing
Students will be able to:
and marketing new drugs.
Reason through a case study using a decision-making
framework.
FRAMING THE LESSON
Apply bioethical principles to a case study.
Students are not introduced to any new concepts in
Create a strong justification for their decision about the this lesson but put into practice what they have learned
case study. throughout the unit. They apply to a new case study their
knowledge of ethical questions, bioethical principles,
LESSON 5
Rezip
PROCEDURE
Kano
Part I: Ethical Question, Facts, and Stakeholders
Activity Time: 15 minutes
Part II: Like Stakeholder Groups
Activity Time: 10 minutes
1. Distribute copies of Student Handout 5.1Case Study:
8. Divide the class into groups of four and assign one
The Time and the Place?, one per student. Allow time for
stakeholder to each small group (more than one group can
students to read the case study.
represent the same stakeholder, if needed).
2. Distribute copies of Student Handout 5.2Ethical Decision-
9. First, students should consider the values and concerns
Making Framework, one per student. As a class, decide the
of that stakeholder group and record them on Student
ethical question. Guide the class to this question:
Handout 5.2Ethical Decision-Making Framework. What
Should Rezip conduct this clinical trial research? are their concerns? What do they care about?
3. Give students approximately five minutes to write down
the facts from the case and any questions that they have on Students may want to refer to Student Handout
Student Handout 5.2Ethical Decision-Making Framework. 1.2Values Definition Table and Student Handout
4. Have individual students brainstorm a list of stakeholders 2.2The Principles of Bioethics.
in the case.
5. Ask for student volunteers to provide names of 10. Next, each group should also consider the Principles of
stakeholders. Bioethics from the perspective of that stakeholder. How
does Respect for Persons relate to the group? Maximize
Field test teachers suggest using the term Benefits/Minimize Harms? Justice? Do all the principles
developing country rather than third world. apply equally to each stakeholder group?
17. Each team member should come to an individual B. Some doubts existed as to the legitimacy of the ethics
decision. This does not have to be a group consensus, nor committee?
does the student have to share his or her decision.
Some documents suggest that the ethics committee
referenced by Rezip was actually set up a year after
Part IV: Student-Written Justification the doctors conducted the trial.
Activity Time: 20 minutes
C. Trovan is now banned?
18. Each student should write a thorough justification for
his individual decision, using the decision chart found on The blockbuster antibiotic Rezip was testing did
Student Handout 5.3Elements of a Strong Justification. not live up to expectations. The European Union later
Note for students that a good justification will touch upon banned the drug and it is no longer in production or
all parts of the Decision-Making Framework. Student for sale in the U.S.
Handout 5.3Elements of a Strong Justification is
organized the same way as the framework, beginning with The Rest of the Story
the question and ending with the solutions. [Note: Share The Rest of the Story only if the students have
finished writing their own decisions and justifications.]
19. If time permits, have students discuss their justifications in
pairs. Students can give each other feedback on the strength Each of the variations to the story (above in Part V) is
of their justifications based on the justification template. true. In April 2009, the pharmaceutical company that
Students should not critique each others positions directly, is featured in this case agreed to pay a $75 million
but focus on the strength of the reasoning. out-of-court settlement to the families of the children
who participated in the drug trial. In August 2009, the
20. Collect the justifications.
company and Kano State reached an agreement in which
21. Ask students to reflect on their experiences by asking, Kano State dropped all claims, and the company denied
Do you have a better ability to make a well-justified any wrongdoing or liability in connection with the Trovan
decision? and, Were you able to listen to and respect study. Under terms of the settlement, the pharmaceutical
other viewpoints? company agreed to establish a healthcare/meningitis
fund to support study participants, provide $30 million in
Part V: Variations on the Story (Optional) healthcare initiatives for Kano State, and reimburse Kano
22. Once students have come to a decision about the case and State government for legal costs.
have justified their decision, have them consider the following This pharmaceutical company also became the first to be
variations to the story. In pairs or small groups, have students accredited by the Association for the Accreditation of Human
discuss whether any of these additional pieces of information Research Protection Programs for ensuring the protection of
would change their decision. Why or why not? human subjects taking part in early-stage clinical trials in four
Would students feel differently if they knew major sites across the globe. To earn this accreditation, the
company participated in a rigorous, 15-month examination
A. The outcome of the trial?
of the clinical research practices at these sites.
Eleven children died during the drug trialfive of
This case reportedly inspired the book The Constant Gardener
LESSON 5
You have recently completed years of medical trainingundergraduate work, medical school, internships, and residencyand
are excited to have gotten a job with Rezip, one of the largest pharmaceutical companies in the world. Based in the United
States but operating in 150 countries, Rezip discovers, develops, manufactures, and delivers prescription medicines to
patients. Many Rezip drugs make life easier and healthier for millions on a daily basis.
You have been interested in global health since middle school, and chose to focus on infectious diseases during your medical
training. It seems unbelievable to you that each year hundreds of thousands of people die from bacterial diseases like meningitis,
cholera, and pneumonia, especially in developing countries. Your passion for global health and your new job at Rezip seem
like the perfect match. Rezip has developed what it hopes will be a blockbuster antibiotic an antibiotic that would fight a
wide range of bacteria and could be taken in tablet form. The drug, called Trovan, is in the late stage of development and so
far has been successfully tested on over 5,000 adult patients in the United States, Europe, and elsewhere. The results are very
promising, and Rezip anticipates that the drug will receive approval for adult use. However, additional clinical trials with younger
patients are needed to prove its effectiveness and safety for children; otherwise the drug will not receive approval for pediatric
use. Rezip is sending you to Africa for two weeks to dispense Trovan to children as part of this needed clinical trial. If Trovan
proves successful overall, millions of adults and children suffering from a variety of deadly bacterial diseases could be cured easily
by taking a few pills. Rezip also projects its total sales could reach over a billion dollars a year as a result.
Drug clinical trials are heavily regulated by the FDA (Food and Drug Administration). In Phase I trials, the drug dosage must
be proven to be safe in 2080 healthy volunteers. Phase II trials then prove effectiveness of the drug in 100-300 patient
volunteers sick with the disease the drug will treat. Finally, Phase III trials prove widespread safety and effectiveness of
the drug in 1,0003,000 patient volunteers. Clinical trials must be conducted in target populations in other words, if the
drug will be used on women, it must be tested on women; if the drug will be used on children, it must be tested on children.
Certain drugs have been known to affect different populations differently, and therefore the FDA demands rigorous clinical
trials on all target populations. In the United States, the full clinical trials cycle can take two to ten years depending on how
many people sign up to be in the trial, the way the trials are conducted, and whether the results are decisive.
Your boss tells you that you are going to Nigeria, which is experiencing the most serious meningitis outbreak ever
recordedhundreds are dying each month. In the first weeks of the epidemic, only about 80% of those with the disease
have survived. Understandably, this presents a severe public health crisis for the government of Nigeria. When you arrive at
the Nigerian slum city of Kano, you are overwhelmed by the needs of the peoplemany of whom are childrenand the
huge crowds gathered at the Kano Infectious Diseases Hospital.
HANDOUT
Nearby, an aid group called Doctors Without Borders has set up a medical station and is dispensing treatments to ease the
epidemic. Despite their efforts, the lines at the medical station are overwhelmed with people needing treatment. You and
your team have been instructed to set up camp close to the Doctors Without Borders station to aid in the relief efforts and
collect data for the clinical research study. As a Rezip doctor, you will choose 200 children with serious symptoms. Half will
be given doses of the experimental drug Trovan, while others will be treated with an antibiotic from a rival company for
comparison (this rival drug has already gone through standard clinical trials and has been shown to be effective and safe).
The children and their families will not know which of the two drugs they are receiving. If Trovan has a very negative effect
on the children, the other drug can be administered. Given the chaos of the crowds gathered, it is decided that getting
consent from individual families will be impractical, so it is agreed that permission from a Kano ethics committee will serve as
consent for everyone. Rezip sought and received permission and consent for the study from a Kano ethics committee made
up of local doctors, health officials, and tribal elders. Culturally, tribal elders often represent their communities.
You look around at the malnourished and severely ill children from the slum city raging with meningitis, cholera and measles.
These are the children you will dispense medicine to and gather data from for the clinical trial. You have some concerns
about how the trial will be conducted, but you also recognize the potential health benefits of the drug. Should Rezip
conduct this clinical trial research?
This is a fictionalized account of a true story. Contributed by Rosetta Eun Ryong Lee, Seattle Girls School.
6. Write a strong justification paragraph for your decision on the topic. Make sure to answer the following questions while
using the evidence (such as the facts and ethical considerations) to support your claim in a way that shows your reasoning.
HANDOUT
Rezip, a large pharmaceutical company, wants to test an Were there any negative outcomes for the 5,000 adults who
experimental drug in Kano, Nigeria during a meningitis outbreak. took Trovan during earlier testing?
Hundreds of thousands of people die each year due to bacterial How dangerous is meningitis?
infections.
How healthy does a child have to be to participate in a clinical
Trovan has already been successfully tested on over 5,000 adults. trial?
Additional clinical trials are needed with children. Who gave consent for the children to participate? How?
Millions of people could benefit from Trovan. How much will the drug sell for if it is approved? Will people in
Kano be able to afford it, if approved?
If approved by the FDA, Trovan could earn over a billion dollars a
year for Rezip. Is two weeks enough to gather data on how effective a drug is?
Clinical trials happen in three stages. What are the side effects from the standard antibiotic that had
already been proven safe and effective?
Clinical trials must be conducted on target populations to get
FDA approval for the drug. What drug(s) was Doctors without Borders using?
and their families treated fairly, and that they are not bearing an Justice
unequal share of the risks.
__________________________ ____________________________________________ ____________________________
Rezip is being practical in finding a population who
Rezip Pharmaceutical Company could potentially benefit from their experimental drug, Maximizing Benefits/
while getting the trial results they need quickly. Minimizing Harms
__________________________ ____________________________________________ ____________________________
They are concerned that their citizens are protected and
Kano State not being used as a means to an end. They may also Respect for Persons
value positive relationships with U.S. corporations. Justice
__________________________ ____________________________________________ ____________________________
The trial should not proceed at this time of intense need and the doctors should return to the U.S.
The trial should proceed only if the families of the children give their fully informed consented to participate in the clinical trial.
The trial should proceed under the oversight of the Nigerian government.
The trial should proceed but only if Rezip stays in Nigeria for longer than two weeks to offer ongoing medical care for the study participants
and their families.
6. Write a strong justification paragraph for your decision on the topic. Make sure to answer the following questions while
using the evidence (such as the facts and ethical considerations) to support your claim in a way that shows your reasoning.
a. What is your position on this issue?
b. What is the factual content to support your position that can be confirmed or refuted regardless of cultural or
personal views?
c. What ethical considerations can be included to support the position? (Respect for Others, Maximize Benefits/
Minimize Harms)
d. What are the views and interests of the individuals or groups affected by the decision that you think are most
relevant to your position?
e. What are the alternative options and why are they not as strong as your position?
Example justifications:
No, Rezip should not conduct this trial. Although hundreds of thousands of people die each year due to bacterial infections and the
drug has already been successfully tested on over 5,000 adults, more studies are needed with children who are not already dangerously
ill and living during a meningitis epidemic. Rezip will violate the principle Respect for Persons by not obtaining informed consent from
the families of the children. Furthermore, they are not respecting the vulnerable population in Kano since they are scheduled to leave
the area after only two weeks, even though the need for medical care will still be acute. The principle of Justice states that risks, costs,
and resources should be equally distributed, but the children of Kano would take the risk of participating, while Rezip would benefit
by collecting the needed data. Although the drug may prove to be beneficial to the children, the potential harms to the children in this
population at this time outweigh the benefits to Rezip.
OR
Yes, Rezip should conduct this trial. The company has already undergone preliminary clinical trials that have shown the drugs effectiveness
in adults. This drug could ultimately be beneficial in this geographical region and health situationa meningitis outbreakand the RESOURCE
fatality rate may be lowered. Rezip could be Maximizing Benefits of study participants by testing an antibiotic that could potentially
alleviate much pain and suffering. By having such a short trial period, the drug could be put on the market sooner and made available to
the people who need it. Meningitis is a serious disease with devastating and sometimes deadly effects; all parties (stakeholders) should
support the development of drugs against it.
A position (claim) has been clearly stated. The decision relates directly to the
A DECISION
ethical question.
The facts and science content can be confirmed or refuted regardless of personal
FACTS
or cultural views. This can be used as evidence to support the claim.
There are a variety of views and interests in the decision and more than one
STAKEHOLDER VIEWS
individual or group will be affected by the outcome.
ALTERNATIVE OPTIONS No one decision will satisfy all parties. A thorough justification considers
strengths and weaknesses of various positions.
and REBUTTALS
REASONING and LOGIC A logical explanation that connects the evidence to the claim is provided.
For our purposes, the justification for the decision is more important than the position on the decision.
HANDOUT
TABLE OF CONTENTS
Pre-/Post-Test Materials
69 Scoring Rubric
INTRODUCTION PROCEDURE
The study of ethics involves consideration of conflicting Ask the students, What can we do to make this a safe
moral choices and dilemmas about which reasonable and comfortable group for discussing issues that might be
people may disagree. Since a wide range of positions is controversial or difficult? What ground rules should we set
likely to be found among students in most classrooms, it is up? Allow students some quiet reflection time, and then
especially important to foster a safe classroom atmosphere gather ideas from the group in a brainstorming session. One
by creating some discussion ground rules. These ground method is to ask students to generate a list of ground rules
rules are often referred to as norms.An agreed-upon set in small groups and then ask each group to share one rule
of ground rules should be in place before beginning the until all have been listed. Clarify and consolidate the ground
Bioethics 101 curriculum. rules as necessary.
Post norms where they can be seen by all and revisit them
LEARNING OBJECTIVES
often. If a discussion gets overly contentious at any time, it
Students will be able to: is helpful to stop and refer to the ground rules as a class to
Create and agree to classroom discussion norms. assess whether they have been upheld.
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A position (claim) has been clearly stated. The decision relates directly to the
A DECISION
ethical question.
The facts and science content can be confirmed or refuted regardless of personal
FACTS
or cultural views. This can be used as evidence to support the claim.
There are a variety of views and interests in the decision and more than one
STAKEHOLDER VIEWS
individual or group will be affected by the outcome.
ALTERNATIVE OPTIONS No one decision will satisfy all parties. A thorough justification considers
strengths and weaknesses of various positions.
and REBUTTALS
REASONING and LOGIC A logical explanation that connects the evidence to the claim is provided.
HANDOUT
For our purposes, the justification for the decision is more important than the position on the decision.
The following case study and support materials were created as a pre-/post-test for a research
study designed to investigate the relationship between explicit instruction in bioethical reasoning
and resulting student outcomes.
Lesson Five of the curriculum is designed to assess students ability to synthesize what they have
learned throughout the curriculum module, and results in a written paragraph showing student
reasoning. Teachers may use Ashleys Case as a pre-/post-test for the Bioethics 101 curriculum, if
desired. For the Ashleys Case assessment, students are not asked to integrate their justification
into a final paragraph detailing how evidence from the case is used to support their claim,
although elements of student reasoning will be apparent in the assessment questions.
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Ashleys Case
Ashley, at age 6, could not roll over, sit up or hold her head up, or use language. Developmentally, she was like an
infant. Ashleys parents, who have two other healthy children, had cared for Ashley in their home since birth. Ashley was
diagnosed with static encephalopathy, meaning that her brain had stopped developing. Doctors determined that there
was no chance of Ashley improving over time.
Ashleys parents grew concerned over their abilities to continue to care for Ashley at home. With continued growth
and development, she would eventually become too large for them to manage her needs, including feeding her,
changing her, bathing her, and positioning her during the night. Additionally, they were concerned at the prospects of
her sexual development, including menstruation, breast development, and fertility.
Ashleys parents made three requests of doctors at Childrens Hospital and Regional Medical Center in Seattle,
Washington. First, they wanted Ashley to have a hysterectomy (removal of her uterus) to prevent any risk of
menstruation and/or pregnancy. Although there are methods like birth control pills to address these issues, they are
accompanied by the possibility of long-term side effects. One risk, blood clots, is considerable in a patient who is bed-
bound and unable to move herself. Second, they requested the removal of her breast buds, which would eliminate
the development of breasts altogether. Ashleys parents argued that her breasts would cause discomfort with the
straps used to hold her in her chair, and that breast discomfort was a known problem for some adult women in the
family. There was also a family history of fibrocystic breast disease and breast cancer. Without breasts, Ashley would
be spared future mammograms and possible biopsies. Finally, Ashleys parents requested medical treatment to limit her
final adult height and weight through hormone therapy. High dose hormone therapy to limit height was a common
treatment for tall girls in the 1960s and 70s and the medical risks over the long term are known to be limited.
The ethics committee noted that there was great need for caution with such procedures, as there have been many
documented cases of past abuses of people with physical and developmental disabilities. Dr. Doug Diekema (who,
with Dr. Daniel Gunther, published their paper on Ashley in the Archives of Pediatric and Adolescent Medicine) acted
as ethicist on this case, and was part of the group that decided the outcome of the parents requests. Dr. Diekema
noted that there were few medical risks involved with the hysterectomy and removal of breast buds (standard surgical
procedural risks), and only slightly higher risks associated with the hormone therapy (such as blood clotting).
HANDOUT
Critics noted that this combination of surgery and hormones to prevent a person from maturing into an adult was
unprecedented in medical history. There were also worries about Ashleys rights as a patient, as her parents were
making this decision without her ability to contribute. There was a general debate about the potential slippery
slope of adapting the bodies of the disabled to suit the needs of the caregivers, unless it could be justified that this
change was also in the patients (Ashleys) best interests. An ethics consultation involving about 20 individuals was
performed before making the decision. The consultation included a developmental specialist, Ashleys primary care
provider, and her hormone specialist. Although Ashleys parents attended the consultation, they were not a part of
the deliberation.
Please see the Teacher Resource section for source information. Originally developed by Jacob Dahlke.
SCORE
2. What is the factual content to support your position that can be confirmed or refuted regardless
of cultural or personal views?
SCORE
HANDOUT
3. What are the views and interests of the individuals or groups affected by the decision that you
think are most relevant to your position?
SCORE
SCORE
5. What are the alternative options and why are they not as strong as your position?
SCORE
HANDOUT
Ethical Question:
Should one or more medical interventions be used to limit Ashleys growth and physical maturation?
If so, which interventions should be used and why?
(No one decision will satisfy all parties. A thorough justification considers various positions.)
Provides a thorough analysis Presents both the Discusses only the strengths No alternate solutions
Alternate of the alternate solutions strengths and the or the weaknesses of are discussed, or does
Solutions that includes multiple weaknesses of the the alternate solution not present strengths
strengths and weaknesses alternate solution(s). or contains either and/or weaknesses
and/or multiple alternate misconceptions or unrealistic of alternate solutions
solutions. The writing is strengths or weaknesses or presents unrealistic
clear and organized. (e.g., Ashleys brain will alternatives (e.g.,
start to develop or being assisted suicide).
able to mature normally is a
strength for her).
As Ashley grows, she will become harder to move, change, bathe, and position at night.
Ashleys parents asked her doctors to help them keep her at home under their care by
performing three procedures:
2. Removal of breast buds to prevent breast development (family history of breast discomfort
and breasts get in the way of straps used to hold her in a sitting position).
Doctors note there are few risks involved with a hysterectomy and removal of breast buds
besides standard surgical procedural risks and only slightly higher risks associated with
hormone therapy. High-dose hormone therapy has a long history of use in children and risks
(such as blood clotting) are known to be limited.
This procedure to prevent a person from maturing into an adult is unprecedented in medical history.
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be too much of a problem to care of them are medically necessary. The her that much. Shes
for and if she stays in the family hormone therapies in particular, with never going to get
home, pregnancy shouldnt be their risk of clotting, are too dangerous. pregnant anyway so
a risk so there is no need for the she doesnt need her
hysterectomy. The family cant uterus and she wont
predict she will have the same need breasts either.
discomfort with breasts as other
females in the family so an invasive
surgery like breast removal should
wait until a real problem arises.
One year after her treatments, at the age of 9, Ashley was 45, about 12 inches shorter than
predicted without therapy. It is estimated that her weight65 poundswas almost half of what it
would have been without the hormone treatments. She continues to live under the care of her family.
Sources:
Disabled girls parents defend growth-stunting decision. Burkholder, Amy. CNN.com,
March 13, 2008. http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.angel/index.html
Diekema, Doug. The Case of Ashley X. NWABR Ethics in Science Online Course. 2007.
The other story from a Pillow Angel. McDonald, Anne. Seattle Post-Intelligencer,
June 17, 2007. http://www.seattlepi.nwsource.com/opinions/319702_noangel17.html
RESOURCE