Defining bioethics: a summary

1) A brief bibliography
- The Nuffield council on bioethics is an independent institution that
examines and reports on ethical issues in biology and medicine
- French consultative ethics committee for health and life sciences/
Reports
- UNESCO universal declaration on bioethics and human rights, 19
october 2005
- Hugo Tristan Engelhardt The foundations of bioethics
- Lisa M Rasmussen, Ana Smith Iltis Mark j Cherry: At the foundation of
bioethics and biopolitics : critical essays on the thought of H Tristam
Engerlhardt
2) Introduction: The historical and international context , the scandal of the
instrumentalization of human beings

- At the foundation of any norm producing activity-and bioethics is a normative field

(how to behave for health agents)- is an experience of normalization. At the
beginning is something that offends, that causes scandal, something that is wrong

- The official birth certificate of medical ethics is the nuremberg code of 1947, which
aimed to break with the nazi practices of experimentation on vulnerable persons, by
recalling the primacy of the human being and respect for his/her dignity.

- By avoiding the stigmatization of any population group or any form of discrimination,

the people involved in scientific research and care know that bioethics is ultimately
based on voluntary, informed and enlightened consent. However, the conditions
for obtaining consent require increased ethical vigilance.

- Other scandals than those related to Nazi politics, also contributed to the advent of
bioethics, in particular the famous experiment initiated in 1932 in Tuskegee
(Alabama) to observe the development of syphilis in patients who were unaware that
they were not being treated- it was stopped in 1972 due to a wave of indignation
aroused by a press campaign
- What is it about? In 1932 in the US , as part of a project to better understand
syphilis, a disease that was widespread at the time and difficult to treat, an
observational experiment was undertaken in Tuskegee, Alabama, to study how the
disease developed.
No therapy was therefore administered to the patients: it was a question of observing
in order to understand, which the patients had not been informed of. The experiment
continued until 1972, when the political authorities interrupted it after a press
campaign that triggered the indignation of many americans, with Senator william
Proxmire describing the experiment as “a moral and ethical nightmare”
This is because, by 1945, penicillin was available and had never been administered
to patients who, moreover, were all African American, poorly educated and poor.
It was in the wake of this scandal that the Belmont report ( 1979) , a major
milestone in recent bioethics history, was written. It emphasizes 3 principles that
should guide biomedical research: autonomy, beneficence, and justice.
 3) The need for ethical principles

- To put an end to the instrumentalization of human beings, The Nuremberg code (1947), a
code of international law, sets out ten principles that must be respected during research on
human beings, including the principle of free and informed consent of persons engaged in
biomedical research.
This code is reinforced by the Declaration of Helsinki of the World medical association
(WMA) of june 1964 , which formulates international directives giving an ethical framework
to biomedical research. It was completed and amended by the WHO’s declaration, known as
the “Manila Declaration”, of 1981, concerning biomedical research on human subjects.

- If the principle of autonomy is compatible with a kantian-style ethics of duty, the principle
of beneficence immediately places us in a consequentialist and utilitarian approach that
calculates the benefit/risk ratio for the best state of affairs in society .

- What does “kantian style” , “a utilitarian style” mean?

Kant focused on duty. We call this point of view a deontological one(deontology definition).
What’s important for Kant is an action made according to duty. The specificity of an ethical
action is to be made without any interest. Kant focused on act rather than consequences.
There’s an imperative of Kant that summarizes his theory: “one must act to treat every
person as an end and never as a means only”. What’s important is the will and not the
propensities of feeling.
Morality for him is grounded in pure reason, not in tradition, conscience, intuition or emotion.
According to him, we act by rational considerations and all ethics is based on obligations.

As for the principle of justice should it be related to a fair distribution of resources or to the
requirement of compensating for natural disparities? More generally, should we treat the
large number of moderately serious illnesses or should we male sure that we never neglect
the small number of very serious illnesses to the detriment of others.

As for the utilitarian point of view (Jeremy Bentham and George Stuart Mill), they focused on
the consequences of an action. The main question is: what is the greatest good (pleasure)
for the greatest number and the least harm (pain) for the least number?

- Many objections were addressed to both these theories:

1) It’s so difficult to have an objective state of pleasure and pain for all. How to compare
my pleasure to one another? My pain?
2) and for the Kantian, how can we get rid of our feelings if we are people so vulnerable
that we unfortunately are exposed to so many shocks and pain. We cannot be
characterized only by free will.

But the question is not appropriate when put in this way, because lives do not compensate
each other. This is where procedural ethics comes into play, by prioritizing between a
principle of equality (treating the disadvantaged) and a principle of efficiency (admitting that
resources should be allocated to some at the expense of others, as in the case of
prioritization of transplantation)
- Let us also note that the Universal Declaration on Bioethics and Human Rights of
october 19, 2005, which in its preamble, states that UNESCO is “convinced that it is
necessary and timely for the international community to enunciate universal principles on the
basis of which humankind will be able to respond to the growing number of dilemmas and
controversies that science and technology are creating for humankind and the environment”

4) An attempt at defining bioethics

- Bioethics can be characterized as “the set of ethical questions raised by the

interface between technologies and the living beings”, and is therefore more
general than medical ethics.

- According to this definition, bioethics has to be understood as a reflection that helps

decision-making in areas related to the survival of living species.

- However this meaning has been limited historically to the point where it has come to
refer mainly to the field of biomedical research: a kind of applied ethics devoted to
the biomedical field.
It therefore implies a reflection based on biotechnologies, and even on techniques in
general .
But, thanks to the renewed reflection on the fragility of ecosystems, bioethics is
returning to its original definitional parameters.
More and more, the fragility of the living human being -a being that is closer to a tree
than to a crystal- which expresses itself more acutely during the last years of a
person’s life, finds an echo in the fragility of ecosystems.

- Bioethics cannot be limited to the abstract person using free will. That’s why fragility,
vulnerability are as important as free will. As Jeremy Bentham, a British philosopher
(end of the 18th century) said: “ The question is not : can they reason? Nor: can they
speak? but can they suffer?” (An introduction to the principles of morals and
legislation (1789)
According to Jeremy Bentham, in ethical issues what is important is to feel not to
think. The consequence is that you cannot give significant ethical issues only to
human beings that show a capacity of reasoning.

Formulating tacit knowledge:

- Ethics is a normative practice, not a tacit relationship that needs to be formulated.
- Placing the patient at the basis of the therapeutic relationship seems obvious, It is far
from being the case in healthcare rules, whether public or private. Medical ethics is
now integrated into several medical training programs. The need to follow explicit
rules protects both the patient and the healthcare staff.
- A Lot of injustice comes from outdated, if not outright arbitrary practices. The
authority of the doctor’s white coat is outdated.
- The patient is not simply an abstract person, reduced to his/her sort of trust in
medicine, a person who just faces a professional conscience.
- He/She is also a human being who has his/her social vulnerabilities , an experience
of deprivation or exclusion, a lack of literacy, which the doctor cannot ignore
completely.

5) Ethical questions

- There are many questions: What would a medical standard be without the descriptive
aspect of scientific knowledge? How do scientific advances in the medical field
interact with the patient’s expectations? How can the claim of the universality of
ethics be put to the test in the case of medical ethics? How can we reconcile the
recognition of vulnerability on the one hand, and the search for capabilities on the
other ?

- There is shorter and shorter time allowed for reflection by the media coverage of
scientific innovations; it is often said that bioethical reflection come too late , long
after the technical innovations , and that it faces difficulty in grasping the ethical
issues at the very moment of the emergence of new technologies;
- There is also, when considering the plurality of cases, the mistrust of abstract
principles

- To face these challenges, bioethics benefits from multidisciplinary and

cross-disciplinary views: it is situated in the “in-between” of such disciplines as
medicine, law, philosophy, anthropology, economics, psychology and biology.
It is constantly confronted with the following misuses and abuses: the refuge in good
conscience, the ethical discourse being confiscated or left to the experts alone.

- There is a need for bioethics when deontology alone is not enough, when the
question arises of whether or not the crossing of every technical threshold should
correspond to a legal or ethical threshold.