Regulation For Whom? By Whom? With Whom? for what?
Gregor Wolbring[i]
The discourse around
the regulation of many biotechnology products, goals, processes and
applications are perceived by many as highly flawed.
Many feel that the
nanotechnology is just developing and the nanotechnology discourse might be
able to generate a decent regulation discourse preventing the pitfalls of the
biotech regulation discourse. So where are we in the nanotechnology regulation
discourse?
The objective of this paper
is to address the issues of regulation with whom’, ‘for whom’, ‘by whom’ and
‘for what’ in order to ascertain whether the Nano discourse of today is better
than the bio discourse of the past especially in regards to disadvantaged and
marginalized social groups especially disabled people.
This paper addresses
these questions among others by using keyword searches in Google, Google
Scholar and different types of academic clusters of databases (results see
table),
The paper will conclude
with an assessment of the state of the nano regulation discourse, the
feasibility of the nano regulation discourse ever becoming inclusive and
suggestions of tool development needed and attitude change needed to make the
nano regulation discourse inclusive.
Nanoregulation for what?
An increasing amount of
people ask for the regulation of Nanotechnology. However what should be
regulated? The safety of nanomaterials, the safety of nanotechnology processes and
products? The equitable distribution of nanotechnology products and processes?
The governance of nanotechnology?
The proper selection of
R&D priorities for a balanced and equitable development of nanotechnology?
Should we regulate access issues or privacy issues?
When we chose
regulations should they first be related to the needs of the marginalized or
the needs of the already powerful social groups? Should they be locally or
globally or should the local ones have a global outline? Can the regulatory system
of today deal with the increasing speed of inventions and the decreasing time
of an invention cycle?
It is
reaonable to expect that perceptions and social values and the existing
hierachy within stakeholders shape what regulation issues are covered with what
kind of angles and even how much visibility any given issue receives. Within
the biotechnology debate, agriculture biotechnology gained much more visibility
and controversy than human ‘health’ biotechnology. Medical Health safety issues gained much more
visibility than social health safety issues such as equity and justice. The
same dynamic of medical health safety issues versus social health safety issues
appears also within nanotechnology and NBICS. The safety card was played by
Bill Joy(1)
putting nanobots and nanotech on the agenda and the field of nanotoxicology of
nanomaterials becomes increasingly visible. The social issues such as
distributive justice, enhancement medicine, transhumanism, concept of health
and others are second tier if that. In the moment the Biotechnology hierarchy
of issues replays itself within Nanotechnology. The results of the keyword combination search method in
Google, Google Scholar, Ovid, Academic Search Premier and Cambridge Scientific
Databases (for a description of the academic databases see appendix in (2)) highlight certain
characteristics and certain realities.
1) The
Term “Nanotechnology Regulation” receives less or equal hits than
Nanotechnology with my name. That is a clear indication of the lack of
discourse around Nanotechnology regulation
2) If one looks at which
social groups are mentioned within ‘Nanotechnology Regulation’ one can clearly
see a hierarchy with disabled people and indigenous people on the bottom. This
is an indication of the prevailing biases within the nanotechnology regulation
for whom discourse
3) The much higher hits
with patients versus disabled people indicates a very medical flavor of the
nanotechnology regulation discourse
4) It also allows for the
conclusion that terms such as safety and risks are interpreted in certain
medical ways
5) The keyword combination
‘Nanotechnology and safety’ has Twenty Thousand times more hits than the
combination ‘ Nanotechnology and distributive justice
6) Nanotechnology
applications like Energy water and food have only 10% or less hits if combined
with the terms law and regulation
7) Nanotechnology teamed
up with human rights has only 20% of the hits of the combination Nanotechnology
and weapons and only 1% of hits of the
combination Nanotechnology and health
8) So far the regulation
discourse seems to be much more concerned with medical health safety than
social safety
9) We have not even
started the debate around the regulation of nanotechnology and we see already
the appearance of synthetic biology which is 1) the design and construction of new
biological parts, devices, and systems, and 2) the re-design of
existing, natural biological systems for useful purposes which has many envisioned applications (appendix 1) in
need of regulation. The regulatory
system of today can not deal with the increasing speed of inventions and the
decreasing time of an invention cycle
Table 1: Word
combination/hits for Google, Google Scholar, Ovid, Academic Search Premier and
Cambridge Scientific Databases
|
SINGLE/COMBINATIONAL KEYWORD/SEARCHTERM |
Google |
Google Scholar |
Ovid |
Academic Search Premier |
|
|
Nanotechnology “Nanotechnology
regulation” “Regulation of
Nanotechnology” Nanotechnology+ Regulation Regulation of Nanotechnology |
137,000,000/ 928/767 3,370,000 1,170,000 |
85,700/ 10/45/ 5,110 3,990 |
15258/ 0/1 296/ 201 |
16040 10/11 718/718 |
14790 0/0 177/4 |
|
Nanotechnology + Wolbring |
840 |
23 |
0 |
7 |
1 |
|
“Nanotechnology regulation” + women
|
252 |
|
|
|
|
|
+ “the south” |
52 |
|
|
|
|
|
+ "indigenous people" |
3 |
|
|
|
|
|
+ disabled
people/ |
2 |
|
|
|
|
|
+ people with disabilities |
8 |
|
|
|
|
|
+ the poor |
88 |
|
|
|
|
|
+ patient |
122 |
|
|
|
|
|
+ Safety |
950 |
|
|
|
|
|
+ Risk |
1340 |
|
|
|
|
|
SINGLE/COMBINATIONAL KEYWORD/SEARCHTERM |
Google |
Google Scholar |
Ovid |
Academic Search Premier |
|
|
Nanotechnology + Law |
14,000,000 |
9,350 |
176 |
1807 |
184 |
|
Nanotechnology +Law + safety |
2,340,000 |
2,090 |
24 |
26 |
18 |
|
Nanotechnology +Law + patient/health |
430,000/ 7,850,000 |
996/ 3,310 |
40/60 |
18 |
6/41 |
|
Nanotechnology +Law + disabled people |
32,500 |
84 |
2 |
0 |
1 |
|
Nanotechnology +Law + women |
3,790,000 |
1,430 |
14 |
13 |
16 |
|
Nanotechnology +Law +indigenous people |
24,500 |
88 |
0 |
0 |
0 |
|
Nanotechnology Law/regulation water |
3,220,000/ 1,390,000 |
4060/2720 |
31/41 |
58/38 |
23/11 |
|
Nanotechnology Law/regulation food |
4,570,000/ 1,540,000 |
2170/2150 |
27/42 |
40/20 |
17/28 |
|
Nanotechnology Law/regulation energy |
6,640,000/ 4,000,000 |
6730/3790 |
51/48 |
98/36 |
52/31 |
|
Nanotechnology Law Justice |
1,460,000 |
|
|
|
|
|
Nanotechnology Law “Distributive Justice” |
586/4 |
|
|
|
|
|
Nanotechnology Law
Justice Women/disabled people |
946,000/16,700 |
|
|
|
|
|
SINGLE/COMBINATIONAL KEYWORD/SEARCHTERM |
Google |
Google Scholar |
Ovid |
Academic Search Premier |
|
|
Regulation of Nanotechnology |
767 |
45 |
1 |
11 |
0 |
|
+ women |
98 |
|
|
|
|
|
+ “the south” |
40 |
|
|
|
|
|
+"indigenous people" |
2 |
|
|
|
|
|
+ disabled people/
|
10 |
|
|
|
|
|
+ people with disabilities |
3 |
|
|
|
|
|
+ the poor |
88 |
|
|
|
|
|
+ patient |
80 |
|
|
|
|
|
+ Safety |
462 |
|
|
|
|
|
+ Risk |
400 |
|
|
|
|
|
SINGLE/COMBINATIONAL KEYWORD/SEARCHTERM |
Google |
Google Scholar |
Ovid |
Academic Search Premier |
|
|
Nanotechnology Safety |
13,600,000 |
4,870 |
395 |
26 |
203 |
|
Nanotechnology justice |
2,720,000 |
1,350 |
14 |
6 |
29 |
|
Nanotechnology distributive justice |
664 |
50 |
0 |
0 |
0 |
|
Nanotechnology human rights |
415,000 |
608 |
9 |
3 |
12 |
|
Nanotechnology environment |
35,200,000 |
14,400 |
786 |
67 |
669 |
|
Nanotechnology health |
46,400,000 |
8,010 |
835 |
105 |
620 |
|
Nanotechnology Medicine |
31,800,000 |
7,440 |
792 |
51 |
7266 |
|
Nanotechnology Weapons |
2,340,000 |
1,880 |
36 |
18 |
47 |
|
Nanotechnology surveillance |
853,000 |
1,320 |
0 |
0 |
34 |
|
Nanotechnology security |
23,900,000 |
4,530 |
79 |
61 |
91 |
|
Nanotechnology Food |
17,700,000 |
4,950 |
300 |
1151 |
158 |
|
Nanotechnology Water |
11,600,000 |
15,800 |
1692 |
2604 |
1135 |
|
Nanotechnology Energy |
48800,000 |
25,800 |
1392 |
4982 |
1702 |
Nanotechnology
Regulation of what? The case of health
According to Frost and Sullivann, nanotechnological
processes in medicine will obtain a sales volume of about $180 billion until
2015. (3) According to the Freedonia group,(4) “demand for
nanotechnology health care products in the US is projected to increase nearly
50 per cent per year to $6.5 billion in 2009 and by 2020, demand for
nanotechnology health care products is projected to exceed $100 billion.”(4)
A Nanomedicine taxonomy from 2003 (5) and a 2005 published
one(6) give an idea as to what is covered my Nano/NBIC medicine
nowadays
(5)
(6)
A nanoroadmap for Nanomedicine in Europe(3) has the following
taxonomy
An interrelationship exist between direction in and
governance and regulation of science and technology and the concepts of
‘health’, ‘disease’, ‘wellbeing’, ’disability’, and ‘impairment’. On the one
hand technologies such as (a) nanoscience and nanotechnology; (b) biotechnology
and biomedicine, including genetic engineering; (c) information technology,
including advanced computing and communications; (d) cognitive science (neuro
engineering) and e) synthetic biology which is A) the design and construction
of new biological parts, devices, and systems, and B) the re-design of
existing, natural biological systems for useful purpose, (‘NBICS’ -nano-bio-info-cogno-synbio) impact
on these very concepts. On the other hand these concepts do impact on the
direction and governance of research and development of NBICS.
Regulating health applications is not as simple as
it might seems.
Relationship between health and wellbeing:(2)
Two contradictory models exist concerning the
relationship between "health" and "wellbeing".
The World Health Organization (WHO) model considers
different domains of well-being as determinants of the umbrella term “health”
which is reflected in the WHO definition of health, wherein health is defined
as "a state of complete physical, mental and social well-being and not
merely the absence of disease or infirmity” (7). This model through
different wellbeing determinants combines the areas of “medical health” and
“social health” under the term “health”.
However
increasingly the discourse seems to move away from the WHO definition of
health treating especially social
wellbeing less and less as a determinant of health(8-10) but interpreting the term “health” to mean
“medical health”/ “medical illness”.
“Health” is used today to cover the domain of "medical"
determinants of "wellbeing." “Social health” is not covered anymore
under the term “health.”
Determinants and models of health(2)
Two models of health
are dominant.
Medical model of health and disease
Within the medical
model of health and disease, health is limited to cover “medical health”
and is characterized as the normative
functioning of biological systems whereas disease/ illness is defined as
the sub-normative functioning of
biological systems.
Locating the cause of and solution for “ill medical
health” comes in two flavors.
Medical
determinants of medical health place the cause of sub-normative functioning within the individual’s biological
system leading to medical interventions towards the species typical norm on the
level of the individuals (medical, individualistic cures). (2)
Social
determinants of medical health identify external factors as the
cause for the “ill medical health” the sub-normative
functioning of the individual and tries to fix the external factors.
This includes, for example, contaminated water that leads to bacterial or
parasitic infections, or job insecurity that contributes to stress and heart
disease. (2)
This version of the medical model is often
misleadingly referred to as the "social model of health" or as the
"social determinants of health". It is misleading in my eyes because
the model addresses only “ill medical health”/"medical illness". The
"social determinants" relating to the social wellbeing the “social
health” of a person are rarely addressed. (2) Furthermore even if the social well being is addressed it
is addressed within the framework of the social well being of a medically ill
person.
Extension One needed: Real Social model of
health(2)
A real social model of health is needed which would
examine how social determinants influence "physical, mental, and social
wellbeing" and would not be limited to look at how social determinants
influence and worsen “medical health”. It would also look at the social well
being of a person in general not just a ‘medically ill person’. One does not
have to be identified as a “patient” or “patient to be”, as a person in “ill
medical health” or in danger of gaining ill/bad medical health in order to be
covered and investigated under the social model of health.
Models of
“disability/impairment” (2)
The Basics: Medical Model of “Disability/Impairment”
Within
the medical model of ‘disability/impairment’,
‘disability/impairment’
is viewed as a defect, a problem inherent to the
person, directly caused by disease, trauma or other ‘medical health conditions’
and a deviation from certain norms. The person obtains the label ‘patient’ with
subnormative functioning.
The solution for the “disability/impairment” of the person or person-to-be is mostly focusing on cure, prevention of birth, deselection on the embryo level, or normative
adaptation. Medical individualistic care and prevention (in the case of the
fetus/embryo) and individualistic normative rehabilitation are viewed as the
primary endpoint and at the
political level the principal response is to make curative and preventive
medicine more efficient.
Extension
One needed: Medical model/social determinants
of “disability/impairment”
Rarely does one employ
the concept of “social determinants of health” within the medical model of
‘disability/impairment’ to investigate how external factors further already
existing “ill medical health” and negatively affect the social wellbeing of the
‘patient’ the person with a disability/impairment’.
Extension Two needed:
Medical model/social determinants/social well being of “disability/impairment”
Even rarer does one seek modifications of social
determinants to make them instrumental in diminishing the ill/bad “social
health” and in increasing the social wellbeing of the ‘patient,’ despite this
necessity for the ‘disabled/impaired’ person/patient. (2)
Extension Three Needed: Social Model of Disability(2)
The social model moves beyond the medical model, social determinants/social
wellbeing combination by linking the usage of social determinants to
social wellbeing and by uncoupling social determinants from the prerequisite of
one being or becoming medically ill. The biological reality of disabled
people is seen as a variation of being – not in
need of fixing – but in need of having the physical
environment, the interaction with the physical environment, and the societal
climate changed to accommodate their biological reality. It does see disability
mainly as a socially created problem, and as a matter of the full integration
of individuals with different biological realities and abilities into society.
Disability is not seen as an attribute or defect of an individual, but as
caused by the reaction of society towards the biological reality of the
individual.
Extensions Happening to
the models driven by NBICS(2)
Moving
from Species-typical functioning to Beyond species-typical functioning
Advances in and converging of NBIC allow for a new
model of health which takes into account the increased ability of science and
technology products to modify the appearance of the human body and it’s
functioning (2) beyond existing
norms and species-typical boundaries.
The
new kid on the block: the transhumanist/enhancement model of health (2)
What is a non-disabled
person?
So far a non-disabled person was someone whose body
functioning was seen as performing within species typical acceptable parameters
(medically healthy). The term non-disabled was used as a counterpart to the
medical/patient type understanding of disabled people.
However this is changing.
Within the transhumanist/enhancement
model of health, the concept of health no
longer has
the endpoint that someone is “healthy” if the biological
systems function
within species-typical, normative frameworks. Within the transhumanist/enhancement
model all Homo sapiens bodies – no matter how
conventionally “medically healthy” – are defined as limited and defective in
need of constant improvement made possible by new technologies appearing on the
horizon (a little bit like the constant software upgrades we do on our
computers). Health in this model is the concept of having obtained maximum (at
any given time) enhancement (improvement) of one’s abilities, functioning and
body structure. Disease, in this case, is identified in accordance with a
negative self-perception of ones non-enhanced body (i.e., “I feel un-well
because I feel confined to the normal human body and I want to add capabilities
to the body as soon as it is possible”).
It
also links social wellbeing and “social health” to the availability of
enhancement procedures.
What is a disabled
person?
The
pure transhumanist/enhancement model of “disability/impairment”
The transhumanist model of health sees every Homo
sapiens body as defective in need of improvement (above species-typical
boundaries). Every
Homo sapiens is by definition, “disabled” in the impairment /medical/patient
sense.
Within the transhumanist model of
“disability/impairment”, disabled people are those who are not able to improve
themselves beyond Homo sapiens normative functioning. (techno poor disabled)
The transhumanist/enhancement model
is a variation of the medical, individualistic, deficiency model using
transhumanist determinants. These transhumanist determinants are in fact
medical determinants that include enhancement, augmentative medicine.
Under this model,
technologies which add new abilities to the human body are seen as
the remedy for ill medical/transhumanist health and wellbeing. Enhancement
medicine is the new field providing the remedy through surgery,
pharmaceuticals, implants and other means.
The
transhumanist model of "disability" views science and technology –
including NBICS – as having the potential to free everyone – the
now "all disabled people" from the "confinement of their genes"
(genomic freedom) and the "confinement of their biological bodies"
(morphological freedom). It seems to fit
well with the existing dynamic of the medicalization of the human body where
more and more variations of human body structure and functioning are labelled
as deviations as diseases and with the phenomenon that more and more ‘healthy’
people feel ‘unhealthy, feel bad about their bodily structure and functioning’ (2).
Realization of the
transhumanist/enhancement model
Step 1: Make “healthy” people feel
bad about themselves:
The very meaning of health and disease is, today,
highly contested. As a result of the dynamics of medicalization more and more
variations of human body structure and functioning are being labelled as
deviations and disease. A growing number of medical technologies are
being employed to improve the looks, performance, and psychological well-being
of people who are healthy. The traditional medical model of health is
increasingly used to artificially assigns a subnormal label toward natural
variations of human characteristics (shyness). More and more variations
of natural characteristics of the human body are being labelled as defective
and in need of fixing. Perfectly healthy persons are made
to feel badly about their appearances or functioning. It sells to healthy people the idea that they
are sick. Disease-mongering is a term
some people use (11-14)
The reality of
medicalizationis acknowledged by many”(2)
An editorial in the British Medical Journal,(15) which rephrased an
editorial of Amartya Sen in the same issue,(16) stated:
“Amartya Sen, an even more distinguished economist,
discusses the paradox that people in America feel much less well than those in
Bihar, India, though their life expectancy is much better.”(16)(p.860)
In an issue of the Seattle Times one reads:
“The number of
people with at least one of four major medical conditions has increased
dramatically in the past decade because of changes in the definitions of
disease. ‘The new definitions ultimately label 75 percent of the adult
Step 2: Add enhancement to the mix
The transhumanist/enhancement model of health,
ability and disease elevates the medicalization dynamic to its ultimate
endpoint, namely, to see the enhancement beyond species-typical body structures
and functioning as a therapeutic intervention (transhumanization of
medicalization).
It also leads to a new social group the techno poor
disabled.
Within the transhumanist/enhancement model of
health and disability, disabled people are those who cannot afford or who are
unwilling to improve themselves beyond human species normative functioning.
They are the new techno-poor disabled
It is important to scrutinize more
closely the societal dynamics around the redefinition of health, disease,
disability/impairment in general and the move towards a
transhumanist/enhancement model in particular and its impact on what is in need
of regulation
In the last part I
outlined a variety of options you can chose from in regards to health and
disability.
In this part I am
outlining some of the consequences.
A transhumanized
version of ableism:
Ableism is a network of
beliefs, processes and practices that produce a particular kind of self, body
and abilities which are projected as the perfect and essential while at the
same time labeling deviation (real or perceived) from this essential self, body
and abilities as a diminished state.
Ableism has been long-used to justify hierarchies
and the exclusion of people not classified as ‘disabled people’. Advances in science and technology are
increasingly enabling science and technology R&D products to modify the
appearance and functioning of the human body beyond existing norms and
species-typical boundaries. The direction and governance of science and
technology and the concept of ability are inter-related. On the one hand,
technologies such as NBICS have an impact on the very concept of ability and
how we judge and deal with abilities. On the other hand how we judge and deal
with abilities influences the direction and governance of NBICS processes,
products and research and development.
A new transhumanized form of ableism is appearing
that takes into account the increased ability of science and technology R&D
products for body modification and is “a network of beliefs, processes and
practices that perceives the improvement of human body and functioning beyond
species-typical boundaries as the norm, as essential
and judges a non-enhanced human body as a diminished state of existence”.[1]
Transhumanism “is a way of thinking
about the future that is based on the premise that the human species in its
current form does not represent the end of our development but rather a
comparatively early phase”(18).
The Techno Poor
Disabled and the Ability divide
As more powerful, less invasive and more
sophisticated enhancements become available the market share and acceptance of
enhancement products will grow. This could very likely develop into a situation
where those who do not have or do not want certain enhancements (the techno
poor disabled) will be discriminated against, given negative labels and suffer
difficult consequences (transhumanism of ableism). For any given enhancement
product there will not be a bell curve distribution, but rather a distribution
jump from the “have nots” to the “haves” which will lead directly to an ability
divide. What will change– depending on the social reality such as GDP of the
economy, income levels and other parameters – is how many people end up as
‘haves’ or ‘non haves’ (techno poor disabled). The ability divide will be
bigger between low and high income countries than it will be within any give
low middle and rich countries and the ability divide will develop between the
poor and rich within every country. Not
everyone can afford the enhancement of ones body. And no society can afford to
enhance everyone’s body if everyone so wishes.
Those deemed healthy by most people today, but who cannot afford or
don’t want the technological enhancements, will became the new class of
'techno-poor disabled.' Billions of people that today are seen as healthy will
become disabled not because their bodies have changed, but precisely because
they have not changed their bodies in accordance with the transhumanist norm.
The transhumanization of ableism is a logical
extension of the ableism the social justice type of disabled people is facing.
Therefore it is of importance how much of this type of ableism is visible,
investigated and rejected or supported.
A transhumanized
version of the DALY
The Disability Adjusted Life Years (DALY)(19-29) is a measure developed
in the 1990s and refined ever since was explicitly developed to "curtail
allocative inefficiency" in the usage of health budget dollars according
to Murray, who was hired by the World Bank and the World Health Organization to
develop the DALYs (24). However what does
that mean under a transhumanist version of health?
To quote Murray and Acharaya (24)
“… individuals prefer, after appropriate
deliberation, to extend the life of healthy individuals rather than those in a
health state worse than perfect health”
The spirit of this quote allows for the
justification of a hierarchy of treatment of people with ill medical health
whereby the ones which are deviating the least from a “species typical medical
health state are treated first.
It furthermore allows for the following
interpretation
“ individuals prefer, after appropriate
deliberation, to ENHANCE the life of healthy individuals rather than those in a
health state worse than perfect health.”
which allows for the justification of a societal
development where one favors ‘enhancement medicine over ‘curative medicine’
seeing pure curative medicine as futile and waste of health care dollars.(2) This shift might also be lucrative from another economic standpoint as
enhancement medicine provides the remedy through surgery, pharmaceuticals,
implants and other means and could become the number one cash cow for many
hospitals and medical practitioners such as ‘body engineers’, ‘body designers’
and body techno-maintenance crews. (2)
Transhumanized version of burden of disease
It prepares the groundwork for the acceptance of
a transhumanist/ enhancement burden of
disease which links the burden of disease not to a deviation from Homo sapiens-typical functioning but to
the lack of enhanced functionalities and life extension and productivity
modification of sentient beings.
Scientific and techno
solutions for social well being?
One can envision that access to technology external
or internal related to the body might increasingly be seen as the solution to
bad social well being. One might see a shift away from societal changes to
promote social well being to science and techno solutions like pills to achieve
the goal that the person feels well socially and otherwise.
Do we develop regulations for or
against the different transhumanized versions outlined above?
Interpretation of
international Documents:
It is evident that the different understanding of
‘health’, ‘disease’ and ‘disability/impairment’ has a great impact on the
interpretation of international documents
i.e. “Bangkok Charter for Health Promotion in a globalized world”(30) the Universal
Declaration of Human Rights(31) and the International
Classification on Functioning Disability and Health (ICF)(32) and the to come
Universal Convention on the rights of people with Disabilities(33). To give some quotes.
ICF definition of disability and impairment.
Disability is defined
as "the outcome or result of a complex
relationship between an individual’s health condition and personal factors, and
of the external factors that represent the circumstances in which the
individual lives." Impairments are defined as "problems in body
function or structure such as a significant deviation or loss.", http://www3.who.int/icf/intros/ICF-Eng-Intro.pdf
In the 2005 Bangkok
Charter for Health Promotion in a globalized
world
one finds the following wordings
” The United Nations recognize that the enjoyment
of the highest attainable standard of health is one of the fundamental rights
of every human being without discrimination;”
“Regulate and legislate to ensure a high level of
protection from harm and enable equal opportunity for health and well being for
all people;” “Government and international bodies must act to close the gap in
health between rich and poor”; “healthier world”; “Health promotion has an
established repertoire of proven effective strategies which need to be fully
utilised”; “advocate for health based on human rights and solidarity”;
“commitments to health for all”; “Make the promotion of health central to the
global development agenda”; “Health promotion must become an integral part of
domestic and foreign policy and international relations, including in
situations of war and conflict”; “Health determines socio-economic and
political development”; and whole sections such as “Make the promotion of health a key focus of
communities and civil society”; and “Make the promotion of health a requirement
for good corporate practices.”
These quotes beg a few questions.
What does “equal opportunity for health and
well-being” mean? Does the quote mean
medical health and mental and spiritual well-being? Or which well-being does the
The Universal
Declaration of Human Rights Article 25-1
states: “Everyone has the right to a standard of living adequate for the health
and well-being of himself.”
The UNESCO Declaration on Bioethics and Human
Rights states
“Recognizing that health does not depend solely on scientific
and technological research developments but also on psycho-social and cultural
factors.
Considering the desirability of developing new
approaches to social responsibility to ensure that progress in science and
technology contributes to justice, equity and to the interest of humanity.
Considering the desirability of developing new
approaches to social responsibility to ensure that progress in science and
technology contributes to justice, equity and to the interest of humanity.
Stressing the need to reinforce international
cooperation in the field of bioethics, taking into account in particular the
special needs of developing countries, indigenous communities and vulnerable
populations.
Article 10 – Equality, Justice and Equity - The
fundamental equality of all human beings in dignity and rights is to be
respected so that they are treated justly and equitably.
Article 11 – Non-Discrimination and
Non-Stigmatization - No individual or group should be discriminated against or
stigmatized on any grounds, in violation of human dignity, human rights and
fundamental freedoms.
Article 14 – Social Responsibility and Health
a) The
promotion of health and social development for their people is a central
purpose of governments, that all sectors of society share.
b(iv) Elimination of the marginalization and the
exclusion of persons on the basis of any grounds.”
Depending which models and
determinants one follows in regards to health, wellbeing and disability the
above quotes demand and justify totally different actions and regulation
efforts. All the quotes from different documents obtain different
meanings depending which models and determinants of health (medical, social,
and transhumanist) one follows and whether one perceives health to mean
‘medical health’ and to be a determinant of wellbeing or wellbeing including social well being to be a
determinant of health leading to different
expected actions, and mandates. All of the quotes also lead to certain
expectations as to the usage of Nanotechnology and NBICS and to certain
expectations as the technology is used in relation to disabled people.
Conclusion:
So far the discourse around regulation hardly
exists and the existing one is biased towards certain interests and certain
worldviews. It’s a long way to go to make the regulation discourse useful to
the global majority. To change the regulation discourse deficit it has to start
to involve marginalized populations and it has to take into account social
safety issues not just medical health/environmental safety issues.
Appendix 1:
Synthetic biology
applications(taken from http://syntheticbiology.org/Applications.html):
Areas Of Interest
·
Fabrication: Synthesis
and Assembly
·
Computation & Signal
Processing:
·
Energy Management:
·
Materials
Processing:
·
I/O And Sensing: MAS
(chemical and E/B fields)
·
Mechanics
·
Replication And
Evolution:
Energy Production And Storage
Summary
·
Humans that
photosynthesize
·
Photosynthetic oil
factories
·
Power supply
·
Convert light to chemical
or electrical energy
·
Superefficient
agriculture via altered nutrient uptake (nitrogen fixing plants, etc)
·
Mechanical energy
storage, in bio-molecular springs.
New Devices And Assembly
·
Plastic production with
precise monomer order
·
Carbon nanotube
building/binding
·
Collagen protein
construction of molecular assemblies
·
assemble small things
·
Nanofabrication of micro
and macro materials
·
New biological pathways
·
template independent DNA
synthesis
·
Biologically compatible
miniature cameras
Molecular Medical Devices
·
Medical Applications
·
Reversal of Aging
·
Disease Fighting
·
Implantable living
battery for medical device. out of electric eel cells.
·
beneficial bacterial
infections programmed to augment immunity, provide needed vitamins, etc.
·
cells that circulate in
the body (extension of immune system)
[edit]
Story
The number of bacterial cells in your
body at this very moment is equivalent to the total population of your own
cells. For the most part they are beneficial, preventing infection, aiding
digestion, and perhaps even producing useful chemicals. These commensals, as
they are called, have evolved with humans in a strongly symbiotic relationship.
Clearly, our body is already conditioned to hold a vast army of prokaryotes to
do its bidding. How can synthetic biology harness this potential?
Imagine a time in the not-too distant
future. Elliott wakes up in the morning to get ready for work. After taking a
shower, he examines his clean, clear face in the mirror, deciding that he can
probably wait another month before re-applying the bio-spray that keeps his
skin pores clean and renders shaving unnecessary. The spray contains skin
surface bacteria engineered to eat dirt, oil, and dead skin, as well as
dissolve the keratin in facial hair, while keeping the skin intact. They also
prevent colonization by foreign bacteria that can cause infection of pores in
skin, preventing acne. He looks at his old toothbrush in the medicine cabinet,
and decides to throw it away. Ever since the dentist gave him the oral wash
earlier in the year, he has had no use for it. The wash contained a population
of bacterial cells programmed to vigorously eat and break down any stains or
food residue, and dissolve plaque buildup. They also created a special biofilm
which prevents other bacteria from colonizing, eliminating halitosis and
gingivitis. Elliott decided to change his breath scent, and picked up a small
pen light which he set to yellow and flashed in his mouth. A few minutes later
he checked his breath. Faintly sweet and citrusy, very pleasant. The bacteria
had been programmed to produce different aromatic compounds depending on the
detection of specific pulses of light; the type Elliott had washed with gave
him 7 popular scents to choose from.
Elliott walked downstairs to the
table for breakfast. He had a bowl of cereal and milk, along with a spicy
southwest omelette and some sausages. Eating was always an enjoyable
experience. Elliott used to be wary of many foods, as he was prone to frequent
indigestion, especially from spicy foods or dairy products. But since his visit
to the dietician earlier this year, those problems were a thing of the past.
After analyzing his symptoms, the doctor selected a digestive commensal from
the Biobricks 3000 catalog which had been programmed for his needs. Now lactose
and the irritating chemicals in most spicy foods were broken down with ease in
his stomach, before they could cause any distress . An added benefit was that
he no longer had to worry about food poisoning. The new commensals specifically
targeted and killed any pathogens from a long list of possible food
contaminants, and could even neutralize the toxins these bacteria produced.
Elliott relished his new state of permanent gastrointestinal bliss.
Elliott then left for his exciting job at the
screw factory. Little did he know that the PDKLHS (People's Democratic Republic
for Lefthanded Screws) had sinister plans this very day. (to be continued)
What we need to do
Such consumer product applications require a
significant amount of metabolic engineering, combined with tightly restricted control
systems. The chassis for these systems are already in existance, as harmless
commensal bacterial species already inhabit these areas of our bodies. Taking
these as a starting point, we need to design metabolic pathways and physiology
which defines a solution-specific molecular input/output. for example, the
toothpaste bacteria must have a metabolism which is geared toward the
"food" we designate; in this case, plaque or materials that can cause
cavities. These metabolic systems need to be tightly controlled by regulatory
and logic systems that allow for feasability; i.e., sufficient energy and
nutrients must exist and be managed in the pathway for the bacteria to happily
make its living, without the buildup of harmful intermediates or any other metabolic
"dead ends". Finally, the system must be designed so that waste
products are optimal for function. For example, sweet smelling molecules for
fresh breath, or other harmless outputs. The thermodynamics and molecular
economy of the cell will have to be tightly constrained to accomplish this.
Potential Problems
Replication is one problem that will need to be
overcome. How to keep the number of organisms at an optimum, so as not to
elicit immune response or get any "buildup", while still reaping the
benefits? one possible solution would be incorporating quorom sensing. Other
problems involve restriction of growth. You do not want an anti-shaving
bacteria to start munching on your eyebrows. Therefore somehow spacial control
must be strictly maintained, and I am unsure how this would be accomplished.
Bioreactors
·
Make intelligent chemical
or bioreactors
·
Dust eaters
·
Total Material recycling
to ideal output (controlled bioreactor)
·
bacteria which break down
waste and use it to create useful products
·
break down of toxic
chemicals to nontoxic components
·
custom drugs
·
in vivo drug regulated
production
Biofilm Scrubbers
Many bacteria grow into colonies
which form surfaces with specific properties, called biofilms. These films
themselves can be viewed as dynamic materials which can be designed for various
functions. One possible function that has been suggested is to generate a
biofilm that forms an airtight sphere. The bacteria in this spherical biofilm
matrix would secrete hydrogen gas into the sphere, producing a
"balloon" which could float. I suggest that such free-floating
biofilm spheres would be the perfect cleaners for air pollution. In highly
polluted environments, the bacteria would scavenge the particulate sulfur,
nitrogen, and carbon compounds out of the air, using them for energy and
growth. Waste products would include hydrogen gas, which would be excreted to
the inside of the sphere, keeping it afloat.
Life cycle:
These structures would start as a
typical bacterial mat-like structure. As hydrogen is generated and secreted in
between the layers, it will begin to swell until bouyancy takes over, and the
mat floats away as a sphere. Questions:
How big will the biofilm structure have to be? it
is biologically realistic? How will the spheres replicate? Is there enough
energy and materials present in pollutants to power a Hydrogen producing
metabolism, or will photosynthesis be required? Can a biofilm be engineered
that can prevent the escape of hydrogen?
Programmable Devices And
Control Logic
·
Control cells
·
build a molecular Turing
machine
·
create D/B and B/D
converters (is this digital/bio?)
·
signal propagation across
cells
·
programmable biological
computers
You Me Genics
·
Human debugger
(read/write)
·
body as edit surface
·
cybernetics
·
self repair bodies
·
external human processing
How do we get there?
·
Need to understand human
genome extremely well
o
How to build using
compatible materials?
·
What would the interface
look like?
o
Need a way to have inputs
and outputs on cellular level
o
Can we make cells that
passively detect signals (like action potentials) without disturbing it?
·
How do we get away from
all the bad notions associated with eugenics?
o
Need safeguards to
prevent misuse
Programmed Organisms
·
Controlled crop maturing
(count days)
·
chemically controlled
pets
·
changing behavior
·
programmable pets
·
biological robots
·
syntho-eukaryotic cell
·
consumer products
Smart Materials
·
Smart paint