College aantekeningen
Hoorcolleges Bioethics, Technology and Law week 1 -5
Uitgebreide hoorcollege aantekeningen van Bioethics, Technology and Law (Lecture notes of Bioethics, Technology and Law).
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Bioethics, technology and law – LecturesLecture 1 – Changing human nature? The bioethical triangle
The bioethical triangle are three schools of thought. They can be easily recognized in
contemporary discussions about bioethical technologies. Which are these?
1) Legalism: Characterized by thoughts on the individual, individual rights and autonomy,
freedom, liberty, liberalism.
2) Utilitarianism: Utility, thoughts on the consequences of our actions. What leads to the
most welfare, the most happiness? What is the right thing to do?
3) Communitarianism: Community, thoughts on the community and more specifically it
focusses on community values.
Human beings as both the subject and the object of new technologies
When we talk about these technologies, it also raises the question: What it needs to be human?
This used to be a question that, if answerable at all, there would be either philosophers or
geologians. But nowadays lawyers also have to come up with answers, because we are --- with
technologies it raises that question. When we start to regulate these technologies, we should do
so in a way that is respectful of our humanity. So we can see how this is happening by brief ---
of its --- relevance. The first is human germline gene editing. That is genetically modifying
ones offspring. The first genetically modified baby has been born in China in 2018. The second
one, artificial intelligence, how the development of AI will influence our own stature as human
beings. Because in order to be able to develop AI, we will have to be able to understand how
heart intelligence works. In order to so, human intelligence will need to become predictable.
We need to be able to recognize certain patterns. Therefore, you can wonder what will happen
to our believe in free will, for instance. If behavior becomes predictable, how credible is it to
believe in human autonomy. It touches on the foundations of ---. Finally, an example from the
field of longevity studies. There are some scientists who propose that we should try and prolong
human life. Not by battling diseases, but by viewing aging in itself as a disease. Most of us see
aging as a natural part of life, as a part of the condition humana, part of being human.
Vulnerability (aging and death) makes us human and also gives meaning to life. So the people
try to battle aging and we can wonder what that will do to human nature. If they really succeed
at this, prolonging a life to 1000 years, what would happen to our morality? Or if we would
become immortal?
Human germline gene editing
A good example of human germline gene editing is the genetic modification of offspring. For
years we were speculating about this day. The day that it would become possible to genetically
modify our children. So many philosophers have written about this, even though at the time it
was still science fiction. The philosophers liked --- and they liked to use their imagination.
‘What if?’. Now the day has come and we can immediately see how this has caused huge
upheaval and heated debates about how to proceed this at all.
How has this become possible? It has to do with the rise of a technology called CRISPR-cas9.
What is CRISPR-cas9? It is genetic modification technology that is surprisingly accessible and
surprisingly easy compared to other technology. What this technology allows us to do is to cut,
copy and paste in genetic sequences. Genetic code is composed of 4 letters: G – T – C – A.
,With CRISPR-cas9 we can cut or add these letters to DNA. First, people apply that to other
organisms than humans. Then they started to apply this to human patients. And now they apply
this to beginning of life. So with human germline gene editing we can genetically modify
embryos.
Why is there so much fuss about it? The thing is, you can use CRISPR-cas9 on already existing
patients, the alterations will remain limited to that person. This is different when you start
modifying embryos. Because once the genetically modified embryo becomes a person when its
born, and once this genetically modified person has a --- for herself, he or she will pass on these
genetic alterations to his or her offspring. So you can see the implications of genetic
modification. Embryos are much more vast than genetic modifying already existing patients.
The first genetically modified babies in history (China 2018)
For now, genetic modification of offspring is bad in most countries. It is bad to the Netherlands,
the Council of Europe. They also banned it in the Oviedo Convention. The EU is also very
hesitant about it, for instance clinical trials in this field are prohibited. So you can imagine the
great surprise, or maybe the horrific surprise, when people heard about what this Chinese
scientist had done. He Jiankui had secretly genetically modified several embryos. Then
implanted these into several Chinese women, resulting in successful pregnancy in one case.
This woman gave birth to genetically modified twin sisters.
First of all, he had defied existing legal rules. So even in China where the rules are quite lax
when it comes to genetic editing, there is still a rule that he cannot do such an experiment.
Technically he defies all rules for human experimentation. What he did was reckless, because
it was hugely experimental and then he tried it to embryos even in quantities, while putting the
health of these baby girls at risk. Why did he do this in the first place? How was he trying to
help these girls? These girls were, in principal, healthy girls. He did not know about any genetic
abnormalities. They said their parents there is aids in the family of these girls and I want to help
them by making them resistant to HIV.
The last thing that people said, even if this technology was safe, even if he would not have put
the health of the girls at risk, there are still several concerns about genetic modification. Should
we do this in the first place? Should we intervene in the human genome? Should one person
design the other peoples genes? Is that up to us? Can we play god? Moreover, there are
alternatives. We can also do genetic selection by strategical methods to help these girls.
How should human germline gene editing be governed?
There are many people advocating lifting the existing ban. They say: We can do this in a safe
and let’s do this only to eliminate genetic diseases, not to create smarter babies or more
attractive babies, but just to help these diseases out of the world. The question is: Who should
decide this? How can we make these decisions? Which role should be left to legal systems
in that process?
Answer student 1: Would be confronted with dilemmas: smarter baby or athletic baby, and
would be confronted by these consequences. Once we start genetic modifying people, where
does it stop? This is up to no one, we should not do this in the first place.
,Answer student 2: Does not agree with above, because we cannot not decide. We have to decide.
If we stick our heads in the sand, other countries will move along. So we have to be ready for
that in a way. In that sense, we have to come up with an answer to this challenge.
You can say that student 1 line of reasoning is more communitarian line of reasoning. In line
of what Michael Sandel is saying. What student 2 is saying is more pragmatic, because we have
to deal with those developments and it has some utilitarian edge to it.
Answer student 3: It can also serve certain community goods to use this technology. Why do
we not try to regulate this technology so we can use it to our advantage, while controlling the
possible disadvantages. You can select certain purposes. (Utilitarian)
Proposals from the science of community for a self-imposed ‘mortorium’ on human
germline gene editing
The biotech community itself were appalled by what He Jiankui had done, but they were gasped
for a specific reason. Not because of what he had done, but how he did it was wrong according
to them. He did not do it in a safe way, not according to the protocols. If he had done it
differently, then many people in the biotech community would be keen with it. For instance,
this geneticists, George Church from Harvard, jumps to his defense. Also, he said that we are
not going to create smarter babies with this technology, not because we should not, but because
we cannot. Human intelligence is determined by so many genetic factors, so it would not be
easy to fix.
The human condition (Hannah Arendt)
Hannah Arendt is a philosopher who is always participating in political lives and public space.
She said that we should not leave such questions to scientists, because if we talk about the
education of these sorts of technologies, we are not just talking about facts of life, but we are
talking about changing the facts of life. Why should the scientists know more about the
education of these technologies than we do? We talk about the future of human kind. It is not
up to the science community to determine what to do with those technologies. They, of course,
know a great deal about and have a really important task, but this is a political question of the
highest order and therefore can hardly be left to be the decision of professional scientists or
professional politicians.
Sheila Jasanoff on proposals for moratorium on human germline gene editing
Today we can still hear the echo of the thinking of Arendt and people who are critical about
these science communities responses. For instance, we have Sheila Jasanoff, who is a very
prominent science and technology studies scholar from Harvard. She said: What the science
community is saying is that we will regulate it ourselves and will self-impose more ---. We will
do a lots of experiments and then we will make it safe and then we can do this for therapeutic
purposes.
Jasanoff: A moratorium without provision for ongoing public deliberation narrows our
understanding of risks and bypasses democracy. Even in technologically advanced societies,
we tend to defer to expert judgements about which risks are reasonable to worry about and
which are not. This is democratic deficit. It inhibit our capacity to participate thoughtfully in
imagining the futures we want and governing technological change accordingly.
, So she says that we should use our imagination. We cannot only rely on scientist for telling us
what the facts are. We are going to change the facts. So we should try envision possible futures.
Therefore, a risk-benefit analysis will fall short, because we will need to come up with visions
of what needs to be human and what needs to live in a democratic society.
Tech governance and imagination
Therefore, we should use our imagination in this course. Lawyers used to study precedence.
They study case law, cases that have already happened. When we talk about new technologies,
we need to take it to possible cases. Lawyers were used to come up with worst case scenarios,
that is what clients ask us to do. When we talk about bio and tech, we also have to come up
with worst case scenarios and see how we can prevent that from taking place. Also for the
ethicists, they will have to use their imagination to see what the possible consequences are.
Ethicists are more used to this.
Gattaca (movie) is a piece of sci-fi and relevant for our discussions on designer babies. For this
week we have to read an essay by C.S. Lewis (wrote Narnia). It is not a coincidence that he has
also written these philosophical thoughts on possible future technologies.
Finally we also have Harrari as required reading for this week. He is an historian, so he focuses
on events of the past. His book Homo Deus is about quests to upbring ourselves to god. He
provides us with what he calls a brief history of tomorrow. So he is also speculating about the
future. He is not saying that this will happen, but: if we continue to go down this road we have
already chosen, then maybe this will happen and we should try to steer into a different direction.
He is not predicting it, but saying that it is a possible future. If you like it, then you should
continue on your quest. If you do not like it, then we should change what we are doing at the
moment.
Part II – The legal-ethical challenges of medical biotechnology
First, we will focus on medical biotechnology and its legal-ethical challenges. What we will
see is that biomedical technology are such foundational questions, that even if we are keen with
the foundations of law or ethics to guide us in a difficult decision, these same foundational
values are under pressure from these technologies. So we should make sure that we apply these
biomedical technologies in respect of our humanity, but at the same time, in our quest to develop
these technologies we will come to see the human in a very different way. In such a way that
perhaps our believe in human autonomy, dignity, equality, freedom and brotherhood will not
make sense anymore. Because in our quest to develop these technologies, we will come to see
that we are not as free as we want to believe. There are so many differences between us, that
we will not feel solidarity for people with different genetics. We want to regulate these
technologies and we rely on the foundation of principles and values, but at the same time these
foundational values and principles are under pressure from those same technological
developments.
Definition of medial biotechnology
Biotechnology is the exploitation of biological processes for industrial and other purposes,
especially the genetic manipulation of microorganisms for the production of antibiotics,
hormones, etc.
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