BIOETHICS
Inhoudsopgave
Introduction...................................................................................................2
Moral theories............................................................................................... 9
Utilitarianism.................................................................................................................. 9
Deontological ethics..................................................................................................... 12
Virtue ethics................................................................................................................. 16
Care ethics.................................................................................................................... 19
Medical ethics.............................................................................................. 22
Theoretical background................................................................................................ 22
Cases............................................................................................................................ 25
Topics in medical and public health ethics....................................................................27
Environmental ethics....................................................................................32
Synthetic biology.........................................................................................45
Introduction.................................................................................................................. 45
Ethics of synthetic biology............................................................................................47
Regulatory considerations............................................................................................51
Case study.................................................................................................................... 54
Closing ideas................................................................................................................. 55
Research ethics............................................................................................ 57
Public health ethics....................................................................................................... 57
Experiments on humans...............................................................................................58
What makes clinical research ethical?..........................................................................59
Human challenge trials................................................................................................. 66
Precision medicine research......................................................................................... 66
1
,INTRODUCTION
Exam
o Written exam: 3 questions (15/20)
Essay questions so you need to write text, not in bullet
points
See Blackboard ‘exam questions’ on how to answer
questions and how it’s quoted
1 question will be about the two introductory classes,
and 2 questions about the topical classes
o Written reflection (paper of 1000 words) (5/20)
About an ethically relevant topic related to your field on
interest, close to your heart (e.g. “Can I kill the spider in
my kitchen?”)
See Blackboard
Timeline
1/4: Submit research question in a few sentences
on Blackboard (already as specific as possible
14/4: Feedback research question
10/5: Submit first version paper
17/5: Feedback first version
25/5: Deadline final version paper
o Attendance of discussion session on the 29th of April (entry
ticket for exam & 1 bonus point on final mark)
Short group reflection
Short paragraph in paper
o Obligatory attendance of the interdisciplinary day on 25/3
(entry ticket for exam)
o Exam & paper can be in English or Dutch
Final competences
o The student becomes acquainted with the ethical problems
and discussions raised by biotechnology, biomedical sciences,
and human impact on the biosphere in general.
o The course incites the student to independent critical thinking,
based on scientifically relevant data and on the traditions and
methods of ethical reflection that steer implicitly or explicitly
the actual social-ethical debates.
o After successful completion, the students will have an
understanding of the main ethical theories and bioethical
principles and methodology. They will understand and form an
opinion on important debates in bioethics.
2
, o The student will be able to form and write an informed opinion
on a topic in the current bioethical debate.
3
, What is ethics
o Right & wrong
o Bioethics: all ethical questions that have to do with live
o Biomedical ethics
Our approach to bioethics
o E.g. animal experiments
Beyond regulations, guidelines and ethics committees
But also: beyond top-down discussions
‘Thinking with’ scientists → Bioethics-in-Science
o Asking also philosophical questions
What does ‘no unnecessary harm’ mean?
How to weigh interests of humans versus non-humans?
Cui bono: what is the purpose of the research?
Traditional view
o Theoretical philosophy
Philosophy spans 2 major disciplines: practical
philosophy & theoretical philosophy. Examples of
theoretical philosophy are metaphysics, philosophical
anthropology and philosophy of science. Here questions
are asked regarding the theoretical knowledge of what is
man, the world, everything… Since modernity, much of
this domain has been taken over by the sciences. Still,
theoretical philosophy as a discipline is still practiced
today. Philosophers reflect on many questions that are
raised by the sciences. Philosophers want to critically
think about these questions and clarify them. For
example, think about the question of what is actually
scientific knowledge. When is something scientific? Think
about the recent discoveries in cosmology, like string
theory. These can no longer be proven empirically. As
we shall see later, these would traditionally no longer
count as scientific.
4
, Philosophers of science and physicists can think together
about scientific practice, and what counts as a scientific
fact in the light of these new theories.
o Practical philosophy
With practical philosophy we mean fields like ethics,
political philosophy and social philosophy. We shall
discuss ethics in depth later on.
Ethico-onto-epistemology
o Ontology
How the world IS
o Epistemology
How we KNOW things
o Ethics
What we SHOULD do
o ➔ all these aspects are deeply entangled
Ontology
o How do we conceive of reality and the phenomena that are
part of
reality?
o What is ‘a disease’?
Scientifically look for what normal physiology is and
disease is anything that deviates from this
Or defined by evolution of pathology
Defined by the effect/feeling of the person
Epistemology and philosophy of science: scientific knowledge
o When is something scientifically proven?
o What counts as a scientific fact?
o How does science progress?
E.g. paradigm shifts (Thomas Kuhn)
o How is scientific decision making influenced by values?
Inductive risk: also weighing of the consequences
influence decision-making
Example: false positive/false negative in drug trials
(caution versus efficacy)
o How are scientists influenced by biases?
o Idea of standpoint epistemology: objectivity requires different
standpoints
What is ethics
o Aristotle: “the good life”
o Now: principles that are the fundament of norms and values
o Morality: common notion of good and evil
o Ethics: reflection about what is good and what is bad
5
, o Non- normative branches
Descriptive ethics or moral sciences
Meta-ethics
o Normative ethics
General normative ethics
Applied ethics
Bioethics
Media ethics
Business ethics
Metaethics: why are we sensitive to morality?
o One idea emphasizes the struggle for existence, states that
ethics applies specifically to humans living in society, and is
based on egoistic prudence. This view is consistent with the
ideas of the 17th century philosopher Thomas Hobbes. In the
beginning, there were few people and plenty of resources and
food. However, when the population grew, people had to
compete over the resources. Individuals became engaged in a
bitter struggle for survival in which only the fittest survived. So
in this harsh environment, the social contract emerged: it was
thought to be in each individual’s interest to abide by a set of
ethical rules or norms. These norms then became
institutionalized in laws and were enforced by the state.
o But more recently, it has become clear that also non-human
animals exhibit altruistic behavior. For example, Frans De
Waal has demonstrated that fairness and altruism, which are
commonly thought to be a prerequisite for morality, are
common among animals. Of course, human morality is
considered by many as distinct from the morality that non-
human animals exhibit, as there is a certain role for religion
and for the concept of ‘taboo’ that may be absent amongst
non-humans. We will come back to the role of religion later in
this introduction.
Metaethics: moral facts and scientific facts
o Ethical naturalism (Peter Railton):
Moral facts not separate from scientific facts
Empirical facts can show what is good
o Ethical non-naturalism (G.E. Moore):
Goodness is a real characteristic
Can be shown and grasped
Role of intuitions
o Bioethics:
Importance of scientific facts
But not mere risk-benefit analysis
6
,7
, Extra: philosophical method how do philosophers think
o Thinking about the meaning of concepts
o Questioning commonly held assumptions
o Using thought experiments
Stories, cases, intuition tests
Exam questions
o What is meant by an ‘ethico-onto-epistemology'?
o What do Thomas Hobbes and Frans de Waal say about the
origins of morality?
8
,MORAL THEORIES
Aims
o Explain what moral theories are
o Explain utilitarianism and give examples
o Explain deontological ethics and give examples
o Explain virtue ethics and give examples
o Explain care ethics and give example
Exam questions
o Concepts
o Open questions: syllabus
Introduction
o Non-normative ethics
Descriptive ethics/moral sciences
Methathics
o Normative ethics
General normative ethics
“What is morally good”
Applied ethics
Bioethics, media ethics, business ethics…
Train problem: do nothing and kill 5 people, pull lever and kill 1
person
o Reasons to pull lever: consequences
Consequentialism (specific form: utilitarianism)
o Reasons to not pull lever: look at your own actions (don’t kill
deliberately)
o Does the situation change when the 5 people are really old
and the 1 person young, or if the 1 person is someone you
love? context, specific/individual relation (care ethics)
o Duties you have no matter the consequences deontology
UTILITARIANISM
“The greatest good for the greatest number of people”
o First problem: what is “good”?
Form of consequentialism (looking at the consequences)
Hedonism
o Jeremy Bentham (1748-1832)
o Looking at consequences but only of yourself (selfish)
o hedonistic calculus to calculate benefits: What matters is what
causes one pleasure. He considered that pleasure (or pain)
could be assessed in terms of factors such as its intensity,
9
, duration, degree of certainty and whether of being succeeded
by sensations of the opposite kind.
John Stuart Mill (1806-1873)
o Qualitative differences
o Utility-principle: “Actions are right in proportion as they tend to
promote happiness, wrong as they tend to produce the reverse
of happiness, i.e. pleasure or absence of pain.” He considered
certain actions qualitatively better than others: for example,
he thought that pleasure of the mind (intellectual activity) was
better than pleasure of the body (e.g. sports). In the 20th
century, people tried to avoid the problems associated with
hedonism further by stating that the good should be defined
as the satisfaction of preferences, rather than pleasures. Many
preferences are not automatically pleasurable, for example,
some people may prefer to spend their time visiting people in
a hostel for the homeless rather than seeking enjoyment by
going out. Also, for him, some actions were qualitatively better
than others, e.g. pleasures of the mind (intellectual activities)
are more important than pleasure of the body (sports).
But the use of pleasure as a basis for benefits has been questioned
by several philosophers, including Robert Nozick. He described in his
Anarchy, State and Utopia (1974) a thought experiment called The
experience machine. Imagine that there is a machine that would
give you experiences that give your pleasure. According to the
hedonistic approach to utilitarianism, having the mere experience
that gives you pleasure would be equally good to actually doing
things that gives you pleasure. However, it seems that the vast
majority of people would prefer actually doing things than merely
experiencing illusions that give you pleasure. Hence, hedonism is
false.
20th century:
o Preference utilitarianism
o Act utilitarianism vs rule utilitarianism
Act: you only look at the act
E.g. if you are secretly in a relationship with 2
people you make 2 people happy instead of 1 so
better
Rule: you also stick to rules of society for example
Act utilitarianism evaluates the morality of each
individual action based on whether it maximizes overall
happiness, while rule utilitarianism determines the
rightness of an act by checking if it conforms to a rule
that, if consistently followed, produces the greatest
10
Inhoudsopgave
Introduction...................................................................................................2
Moral theories............................................................................................... 9
Utilitarianism.................................................................................................................. 9
Deontological ethics..................................................................................................... 12
Virtue ethics................................................................................................................. 16
Care ethics.................................................................................................................... 19
Medical ethics.............................................................................................. 22
Theoretical background................................................................................................ 22
Cases............................................................................................................................ 25
Topics in medical and public health ethics....................................................................27
Environmental ethics....................................................................................32
Synthetic biology.........................................................................................45
Introduction.................................................................................................................. 45
Ethics of synthetic biology............................................................................................47
Regulatory considerations............................................................................................51
Case study.................................................................................................................... 54
Closing ideas................................................................................................................. 55
Research ethics............................................................................................ 57
Public health ethics....................................................................................................... 57
Experiments on humans...............................................................................................58
What makes clinical research ethical?..........................................................................59
Human challenge trials................................................................................................. 66
Precision medicine research......................................................................................... 66
1
,INTRODUCTION
Exam
o Written exam: 3 questions (15/20)
Essay questions so you need to write text, not in bullet
points
See Blackboard ‘exam questions’ on how to answer
questions and how it’s quoted
1 question will be about the two introductory classes,
and 2 questions about the topical classes
o Written reflection (paper of 1000 words) (5/20)
About an ethically relevant topic related to your field on
interest, close to your heart (e.g. “Can I kill the spider in
my kitchen?”)
See Blackboard
Timeline
1/4: Submit research question in a few sentences
on Blackboard (already as specific as possible
14/4: Feedback research question
10/5: Submit first version paper
17/5: Feedback first version
25/5: Deadline final version paper
o Attendance of discussion session on the 29th of April (entry
ticket for exam & 1 bonus point on final mark)
Short group reflection
Short paragraph in paper
o Obligatory attendance of the interdisciplinary day on 25/3
(entry ticket for exam)
o Exam & paper can be in English or Dutch
Final competences
o The student becomes acquainted with the ethical problems
and discussions raised by biotechnology, biomedical sciences,
and human impact on the biosphere in general.
o The course incites the student to independent critical thinking,
based on scientifically relevant data and on the traditions and
methods of ethical reflection that steer implicitly or explicitly
the actual social-ethical debates.
o After successful completion, the students will have an
understanding of the main ethical theories and bioethical
principles and methodology. They will understand and form an
opinion on important debates in bioethics.
2
, o The student will be able to form and write an informed opinion
on a topic in the current bioethical debate.
3
, What is ethics
o Right & wrong
o Bioethics: all ethical questions that have to do with live
o Biomedical ethics
Our approach to bioethics
o E.g. animal experiments
Beyond regulations, guidelines and ethics committees
But also: beyond top-down discussions
‘Thinking with’ scientists → Bioethics-in-Science
o Asking also philosophical questions
What does ‘no unnecessary harm’ mean?
How to weigh interests of humans versus non-humans?
Cui bono: what is the purpose of the research?
Traditional view
o Theoretical philosophy
Philosophy spans 2 major disciplines: practical
philosophy & theoretical philosophy. Examples of
theoretical philosophy are metaphysics, philosophical
anthropology and philosophy of science. Here questions
are asked regarding the theoretical knowledge of what is
man, the world, everything… Since modernity, much of
this domain has been taken over by the sciences. Still,
theoretical philosophy as a discipline is still practiced
today. Philosophers reflect on many questions that are
raised by the sciences. Philosophers want to critically
think about these questions and clarify them. For
example, think about the question of what is actually
scientific knowledge. When is something scientific? Think
about the recent discoveries in cosmology, like string
theory. These can no longer be proven empirically. As
we shall see later, these would traditionally no longer
count as scientific.
4
, Philosophers of science and physicists can think together
about scientific practice, and what counts as a scientific
fact in the light of these new theories.
o Practical philosophy
With practical philosophy we mean fields like ethics,
political philosophy and social philosophy. We shall
discuss ethics in depth later on.
Ethico-onto-epistemology
o Ontology
How the world IS
o Epistemology
How we KNOW things
o Ethics
What we SHOULD do
o ➔ all these aspects are deeply entangled
Ontology
o How do we conceive of reality and the phenomena that are
part of
reality?
o What is ‘a disease’?
Scientifically look for what normal physiology is and
disease is anything that deviates from this
Or defined by evolution of pathology
Defined by the effect/feeling of the person
Epistemology and philosophy of science: scientific knowledge
o When is something scientifically proven?
o What counts as a scientific fact?
o How does science progress?
E.g. paradigm shifts (Thomas Kuhn)
o How is scientific decision making influenced by values?
Inductive risk: also weighing of the consequences
influence decision-making
Example: false positive/false negative in drug trials
(caution versus efficacy)
o How are scientists influenced by biases?
o Idea of standpoint epistemology: objectivity requires different
standpoints
What is ethics
o Aristotle: “the good life”
o Now: principles that are the fundament of norms and values
o Morality: common notion of good and evil
o Ethics: reflection about what is good and what is bad
5
, o Non- normative branches
Descriptive ethics or moral sciences
Meta-ethics
o Normative ethics
General normative ethics
Applied ethics
Bioethics
Media ethics
Business ethics
Metaethics: why are we sensitive to morality?
o One idea emphasizes the struggle for existence, states that
ethics applies specifically to humans living in society, and is
based on egoistic prudence. This view is consistent with the
ideas of the 17th century philosopher Thomas Hobbes. In the
beginning, there were few people and plenty of resources and
food. However, when the population grew, people had to
compete over the resources. Individuals became engaged in a
bitter struggle for survival in which only the fittest survived. So
in this harsh environment, the social contract emerged: it was
thought to be in each individual’s interest to abide by a set of
ethical rules or norms. These norms then became
institutionalized in laws and were enforced by the state.
o But more recently, it has become clear that also non-human
animals exhibit altruistic behavior. For example, Frans De
Waal has demonstrated that fairness and altruism, which are
commonly thought to be a prerequisite for morality, are
common among animals. Of course, human morality is
considered by many as distinct from the morality that non-
human animals exhibit, as there is a certain role for religion
and for the concept of ‘taboo’ that may be absent amongst
non-humans. We will come back to the role of religion later in
this introduction.
Metaethics: moral facts and scientific facts
o Ethical naturalism (Peter Railton):
Moral facts not separate from scientific facts
Empirical facts can show what is good
o Ethical non-naturalism (G.E. Moore):
Goodness is a real characteristic
Can be shown and grasped
Role of intuitions
o Bioethics:
Importance of scientific facts
But not mere risk-benefit analysis
6
,7
, Extra: philosophical method how do philosophers think
o Thinking about the meaning of concepts
o Questioning commonly held assumptions
o Using thought experiments
Stories, cases, intuition tests
Exam questions
o What is meant by an ‘ethico-onto-epistemology'?
o What do Thomas Hobbes and Frans de Waal say about the
origins of morality?
8
,MORAL THEORIES
Aims
o Explain what moral theories are
o Explain utilitarianism and give examples
o Explain deontological ethics and give examples
o Explain virtue ethics and give examples
o Explain care ethics and give example
Exam questions
o Concepts
o Open questions: syllabus
Introduction
o Non-normative ethics
Descriptive ethics/moral sciences
Methathics
o Normative ethics
General normative ethics
“What is morally good”
Applied ethics
Bioethics, media ethics, business ethics…
Train problem: do nothing and kill 5 people, pull lever and kill 1
person
o Reasons to pull lever: consequences
Consequentialism (specific form: utilitarianism)
o Reasons to not pull lever: look at your own actions (don’t kill
deliberately)
o Does the situation change when the 5 people are really old
and the 1 person young, or if the 1 person is someone you
love? context, specific/individual relation (care ethics)
o Duties you have no matter the consequences deontology
UTILITARIANISM
“The greatest good for the greatest number of people”
o First problem: what is “good”?
Form of consequentialism (looking at the consequences)
Hedonism
o Jeremy Bentham (1748-1832)
o Looking at consequences but only of yourself (selfish)
o hedonistic calculus to calculate benefits: What matters is what
causes one pleasure. He considered that pleasure (or pain)
could be assessed in terms of factors such as its intensity,
9
, duration, degree of certainty and whether of being succeeded
by sensations of the opposite kind.
John Stuart Mill (1806-1873)
o Qualitative differences
o Utility-principle: “Actions are right in proportion as they tend to
promote happiness, wrong as they tend to produce the reverse
of happiness, i.e. pleasure or absence of pain.” He considered
certain actions qualitatively better than others: for example,
he thought that pleasure of the mind (intellectual activity) was
better than pleasure of the body (e.g. sports). In the 20th
century, people tried to avoid the problems associated with
hedonism further by stating that the good should be defined
as the satisfaction of preferences, rather than pleasures. Many
preferences are not automatically pleasurable, for example,
some people may prefer to spend their time visiting people in
a hostel for the homeless rather than seeking enjoyment by
going out. Also, for him, some actions were qualitatively better
than others, e.g. pleasures of the mind (intellectual activities)
are more important than pleasure of the body (sports).
But the use of pleasure as a basis for benefits has been questioned
by several philosophers, including Robert Nozick. He described in his
Anarchy, State and Utopia (1974) a thought experiment called The
experience machine. Imagine that there is a machine that would
give you experiences that give your pleasure. According to the
hedonistic approach to utilitarianism, having the mere experience
that gives you pleasure would be equally good to actually doing
things that gives you pleasure. However, it seems that the vast
majority of people would prefer actually doing things than merely
experiencing illusions that give you pleasure. Hence, hedonism is
false.
20th century:
o Preference utilitarianism
o Act utilitarianism vs rule utilitarianism
Act: you only look at the act
E.g. if you are secretly in a relationship with 2
people you make 2 people happy instead of 1 so
better
Rule: you also stick to rules of society for example
Act utilitarianism evaluates the morality of each
individual action based on whether it maximizes overall
happiness, while rule utilitarianism determines the
rightness of an act by checking if it conforms to a rule
that, if consistently followed, produces the greatest
10
