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Bioethics

The Future of Our Memories (2005, Royal Institution of Great Britain)

The Future of Our MemoriesRoyal Institution of Great Britain 23 June, 2005

Wendy -    Bruce Almighty, God digitised? ‘file cabinet’ of memorie -    Share v private

Various Jim Carey movies

Neil

Hartley et al 2003 -    VR – ask neil -    Functional magnetic resonance imaging

Graham et al 2003 -    memory related dementia -    Alzeimers -    Factual memory (Semantic dementia)

Vanneber Bush, 1945 – see Bergire (d-Lib), may) -    www.memoriesforlife.org

AR/VR -    mixed reality lab, Singapore

Alan Nevell (dunde, social memory)

Miniature recording device

48 hrs of video – reality tv – dull – audience

Rugge et al

Hans Berger 1929

Quroga et al 2005 – face recog

Kriema et al 2000

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Sport Medicine Ethics (2005, Stockholm)

Sport Medicine Ethics, Stockholm,May 2005-05-24

Christian Munthe Sport, Med and HC

HC goods -    securing certain lev of health (prevention, restoration, ailment) -    in a just way

SM goods – secure health conducive to athletic performance -    beyond HC lev ofhealth and goals, also enhancmenet not approach reqt of justive

dual influences of SM -    ethos of trad med (life and qual, autonomy, justice) -    ethos of sports (supreme performance and excellence), autonomy, fairness

Rationing HC -    HC: need paramount (and prognosis); prov for worse off upto a level; contested ideas about relevance of numbers;l contested ides about relevance of merit/desert -    SM: unclear about what is paramount; resource not limted by same funds; numbers probc; merit desert can work both ways (sports injuries, self inflicted, heroes benefit soc)

Conested procedures – 4 args (doping, etc)

1.    SM should adapt to ethos of HC (either prob: goals different; or: reason for revising 2.    HC adapt to ethos of Sports (excellence, fairness): either: prob: rules and goals of sport arbitrary from medical view, or: recom for breaking SM out of HC 3.    Sports should adapt to ethos of HC (but: safety or justice arg) 4.    HC should adapt to ethos of SM (safet, justice) Either: probc, due to dit; radical revision of HC

Remarks: -    what ethos is relevant for ethos of SM? -    ‘place’ of SM? -    Basic prob for ethos based ethics – virtue sport philosophy, or communitarian theories of justice -    Challenge for medical ethics – sm/sport -    There is no archimedian point -    Inquiries into concrete, partic issues needed

Claudio Tamburini

No difference view – between med everything and sport med ethics – latter only more specific applic of normative framework in med ethics generally – NOT TRUE – eg. Autonomy/privacy function/meaning in different way in sport – sport med more paternalistic – eg. Training technique – athletes are not protected -, must subit to rules, - testing = privacynot same – no difference view obviously wrong

But should they be different? – yes: athletes are not sick – wrong to giv medicine for sick – Lyjungqvist = doping is medicine – ‘athletes are healthy’ – thus athletes are not patients – not general rights of HC system  - what’s wrong w athletes using med (prov not state funded) – athlete are patients – meaning of patient – suffer from pathology – too narrow – today healthy people give treatment – not clear where to draw t line – healthy people already consume – WHO – well-being – dependence of medical prof for (non(athlete – exposure to effect of medicine makes vulnerable and this vuln indicates patient status , regardless of whether customer – athlete? – are patients – conclusion: recog as patient

ME: ethos of medicine is that absence of proof does not mean absence of reasonable expectation or evidence; cannot refer to WHO for support for an ethical view same for anti doping code

Anders Sandberg

Health consumerism – what are enhancement treatments? – alcohol caffeine, etc – st johns wort – ginseng – positive psych – beta blockers (musicians) – growth hormone – since it is an enhanceent(?) – IGF – improved elasticity – cognitive enhancement – social (prozac -= leadership) – acceptance is complex =- is morphological freedom a right? – functional food yes, GM less, but dfferes in culture – Japan 50%, would consider, 66% would for … therapy – Thaliand, India, yes, if adv – WHO – health as optimal but function relation to ones own cgoals – conclusion: doping and enhancement  - performance artists: how they change their body

ME: only medical intervention reqd ; modafinial, global GM same?

Question&A

JS: by allowing enhancement, implies coercion

MMc: autonomy – inc vulnerability = higher standard SH: sm goal fro physiocan as not ‘excelelnt’, but goal of employer – make sure team wins CL: health definition tooo wide – who – boorse – too narrow Tomas (athlete): paternalism – we let athlete do unhealthy things, so not too paternalistic – wada: not prov risk to health – Is pressure on autonomy so freat for an athlete? CT: as patient more exposed to med prof – athlete can choose not to expose themselves JP: beta-blockers not analogous – art and creaft

REF: MIGUEL NICOLELI – NEUROSCIENCE, CHIPS IN ARMS, MAGNETIC

Susan Sherwin

Should we welcome/resign/resist – social polic y or indiv choice? – Francoise Bayliss/ - oppose – to pursue GE = research prog – sports req different kinds of body type – enthusiasm for GE = popular reductionism – avoid enthusiasm welcome – also reject 2nd (resign) – beleief in efficacy will lead to demand (!) – resigned acceptance is self-fulfilling- reject inevitability – opt for resistance – social policy, not indiv choice – indiv choice: autonomy as informed choice – prog grants to challenge rights based – for some implices reduced autonomy – must include right to refuse – but in sport not possible – broader implic for young athletes – most likely to be applied in adolesecenc, this is bad time – cannot claim ‘iformned’ – challenge indiv – reject trad economy defences – reject indiv autonomy and personhood and supplement w relational theory – persns as partially contested by social relations – liberal theorie treat self-hood as indiv, relations -= selfhood as ongoing project – wht are t proceses by which a person holds certain prefers – fem theory – irrationality based on consensus (irrational to resist conformity – become irrational NOT to select enhancement – excellence as GM conveys something to those who are genetically deficitine – new expctation for improvement – entrenches legitimacy of comp (social Darwinism) – precautionaryu princip0le needed – excellence is not GM, but social programes – less sexy perhaps

ME: what else shouldn’t we have done based on this model?

Sarah Teeztsel

Adam Moore – unexamined life..open to inspection – proivacy and tech – gene doping – uise of legl gene theory for sport not acceptable – banning just -    drug testing in sport (Canada report) – invasion of privacy - acknowleged

Nick Bostrom

(w Toby Ord) – good or bad – double epistemic prob – 1. radical disagreement about conseqs, 2. Eval of consqs: even if we know what would happen, diffi to say whether, on balance, is good orbad – double epistemic chance of only major reform – eg implic of abolishing slavery, rely on stat and subj intuitions judgement – biases – ‘status quo’ bias – doc by exptl economits – defined as inapprop or irrational pref for state, just because it is XX – ‘mug’ experiment – choc bar or nice mug – predict that 50% would get what they wantede, but 90% choose to return item – ‘endowment’ effect – place value on something just because given to us – irrational? – but status quo bias clear explanation in bioethics, definition of judgmeent for this

how elminate bias? – hypothetical enhancement of cognitve (eg. Memory) – conseq: should we think enhancenment would have good/bad oconseqs? – oft doubts about this (fear of unknown) – how adjudicate between opposing views – ask counter intuitive: what if did opposite? – decrease human cognitive capacity – clearer agreement that bad – those who also bad must judge why ‘current’ level is optimal – burden of proof is on those who make these claims – seems implausible that isat peak – reversal test –doesn’t say is wrong, but that burden of proof on ‘status quo’ – cognitive enhancement: arg from ‘evol adaptation’ reg ratio of heart size to body size – w cognitive enhancements, arg doesn’t work, since eg enviro different now than was previously (ie now cognitive society, previously physical soc);  - if human cog cap corresponded w brain size, then might be good – preventing costs to bigger brain – now less – now less – what evol optimises, so inclusive fitness, but human sep side undermine this – eg. Intell – 2. Arg from transition costs: (do not sxXX, kust because implies t difficult – cost to great - - 3. Arg from risk – but this works both ways – riskness doesn’t imply anything specific -  cognitive benefits enormous – 4. Arg from ‘persons affecting’ – consier not likely to effect – 2nd reason of reversal – imagine – double reversal – more powerful heuristic – as takes into account these other args – toxin in water, reduce cog, intro therapy to water – then toxin removes, then cog enahncenemts above optimal (double reversal test) – reverswal and double reversal best comforts to status quo bias – it extent bias – must interpolate  2 versions of status quo – can take into account genesis choices , deontological considerations, and social policy – intuition about ‘natural ‘ prevalent in bioethics – natural = good – intuition about natural more properly about ‘status quo’

Mike McNamee Slippery Slope

Half-baked HN – witnessin convergence of system – no human or postmodern consition – but convergenet – views of transhumanism not clear – ‘transcend limits’ of HN is wrong – ‘features? Is more approp – reduce vulnerability to human – posthuman? – use to enahncene H choices – no need to shed HN, but augment – in favour: facilitate 2 aims: use technology to improve Hs – transhumanism: ‘ideal blue print’ – personhood: if indep of species, then moral status maintained – arg: 2 types of being|: human and posthuman – Buchanan et al: found on category of H – no longer common H – expand inequalities – genetically deficient – autonomy as RRATIONAL CHOICE THEORY – DEMOcratic technology is naïve and idealistic – surely coomerce will govern – in elite sport prevalent – double blind: poor pay for pleasure of envy – for other transhuman 0 engineer resistance – what is idal type? – criteria of THN – affront to morality – eg. HR, tranhusmanist might be beyond human – why moved by approach of ‘solidarity’ – life span: agening as a creapping evil – woody allen: ‘immortal not by doing great deeds, but by not dying’ – burden of proof should be on transhumanist – transhumanist has no limits and thi is a prob – eg. Bod transplant – burden of proof is on ‘us’ – t human is ‘repugnant (Kass) – proof of transhumanist (HE!) – misuse of drugs for sport enhancement – genetic enhancement – approach to therapy first and subjective normalise these – Kant’s ‘dove’ – preconditions of dyling – should celebrate human vulnerability

For NB : does arg depend on stable conseqs? Different versions of autonomy

Jared Diamond – h not changed much in thouse years, but h can find new ways of re-working hu  limits – intell  (rather acculating of cuilture allows more effective development )

Kate fox book – ‘what do we want, gradual chance, when do we want it, in due course’

NB: Asian disease prob –

600 will die without intervention

A  - 200 saved 75% B – 1/3 600 saved, 2/3 0 saved 28%

C 400 die 22% D 1/3 0 die, 2/3 600 die %78%

A and C are same

B and D are same People overweigh losses in decision making

JS: satuat quo not irrational -    if neither v good nor v bad, then not irrational -    - if chose for 150 age, but might me 40 yr, stick w 80 -    in absence of giving people choice to change, giv opp to do that o    if has rich, then prob not whether conformist – cosmetic surgery entrenches norms

Jim Parry –

Supplements – rusedski – defence – supplement – is suppleenmt controlled Different between an orange or taking vitamin pill – ME: an orange is more (still don’t really know what foos is) – foods are unknown ssubstances

Soren Holm -    new drugs – social position  - should not expect sports doctors to prov good advice -    no reason to beloieve that no ban would lead to open safer doping

should not pressure people finto taking big risks

sociall construction of rules – and arbitrariness of rules

MMc: autotelicity – have own rules

Human Enhancement Technology (2005, Harvard Law School)

Dan Brock Positional / competitive enhancements Relative enhancement or intrinsic

Many enhancements Ritalin ‘Enhancement v treatment’ v ‘enhancement v achievement’ surgeon  using drug to steady hand – enhancement? But a good thing! Special diet? – training, tf natural -    distiction – conventiona

natural means, effort, etc -    basis for merit

but use other things – natural talent natural – not what we can take credit for

natural – brings out potential enhancement – changes potential

but flawed! No such thing as a fixed potential

Olivier

Rules for technology -    icu – rules on bikes

press on doping often biased – in what way? -    media over simplify -    sometimes good that not public

record number of positive cases in Athens -    more than history of Games

Misuse of medicine

They are fighting ‘mafia’ of sport – illegal market of drugs -    ME: what is incentive pf pharma to work with WADA?

Protect ‘ future health’ of athletes -    ME: mmm, future health, what does it mean to protect this? – if gene profiling shows I will die at 30, then?

More public exposure than ever before

Anti-doping comes from the Athletes, who do not want to jeopardise future -    athletes want to be natural

standardised v personalised technology

Q&A

Power patches used by athletes – lifewave technology Acupuncture?

Different kinds of technology

polevault -    accessibility

Is there any incentive for Pharma to work with WADA?

If all enhanced, sport no more interesting -    al athletes running 100m at 8seconds, no more interesting than 9secs

not all risks are acceptable, if come with harms that

Olivier: we are in a ‘risk reduction’ society. -    ME: mmm, not that sure! Risk calculating perhaps.

Next generation of EPO -    company who develop panicked, since worried about its use in sport

genetic technology as therapy and enhancement, then is it ok?

Justice, Healthcare and the Trend Towards Predictive Medicine (2004, Brussels)

Conference NotesJustice, Healthcare and the Trend Towards Predictive Medicine 22 & 23 November, 2004.

Intro

M-J Simoen Background on Foundation.

Cecille…. Brocher foundation aim to provide place for research, linked to medical and scientific: socio-political implications of progress. Mr and Mrs Brocher interested in links between science and law.

Is medical care a service like any other?

Alex Mauron Scientific and social aspects focus Access to health care should not just be for determining individual predisposition, but social solidarity – linked to justice.

Importance of Europe. Genomic and medical progress – impc placed on difc between individuals and risk profiles and tendency people have to be affected by certain medical conditions – pharmacogenetics.

First analyse from philosophical perspective (first session) – regulatory concepts.

Bernard Baertschi, Uni of Geneva – philosopher of bioethics One of most signif authors in francophone world

Bernard Baertschi Norman Daniels was student of John Rawls

Sustaining a right to health care Norman Daniels, ndaniels@hsph.harvard.edu Harvard School of Public Health

Can (should) t tradl Euro view of health care as a basic, universal right be sustained in t face of t challenges posed by advances in predictive medicine and t emergence of a more diverse Euro Union and Market

I focus on ‘should’ more than ‘can’, though should presupposes can, so cannot escape feasibility

Small Irony

You should sustain right to health care 45million people uninsured in US –  they get care, but get too little too late

mentions Bush prob

Promise from more competition: more efficiency -    US as model – expts in comp at various levels: hospitals, insurer, managed comp o    Early Rand study evidence: cited as main evidence, but negative effects on patient health not given much attention o    Prob with export of US strategies for health care – led to following bad models o    Era of managed comp – 1990s ‘backlash’ o    ‘consumer driven’ health plans in US – newest phase -    Economists: failures to lower unit costs, to lower rates of cost increase are evidence that ideal market conditions not approximated, try harder

RAND HIE: 1974 (CLOSE READING IN AN AGE OF EVANGELICIALISM – LATER) -    RANDOM CONTROLLED EXPT REGARDING FREE CARE V DIFFERENT LEVS

Appeal to markets: empirical not principled issue -    not in principe against using market forces – if it could be shown that comp worked to make system yield more value per euro and could be channelled to do so equitably through proper reg, I would embrace integrating marketing mechs -    BUT: US unit prices highest in world, despite more market mechs, no evidence of greater value per doller – indeed contrary evidence, and worst outcomes (return to this later) -    Caution

Promise of Predictive Medicine -    early, low cost predictive profile of health risks – through extensive genetic testing o    assumes low cost, good predictive value for more than straightforward genetic diseases eg. Applicability to high prevalence, chronic conditions o    assume privacy issues addressd -    Promise from (hype from?) genomics, proteonomics,- specifically tailored drugs for safe, effective treatment of indiv depending on genotype -    This technology is a mismatch with existing economic incentives for medicine -    Every drug will become orphan drug – only treat a few people, so why develop o    Many economic and oscila probs before

Predictive Med: two paths -    make syst work better, sustain equity o    idf those at risk o    respond better to identified needs •    indiv medicines? But more orphan drugs o    allocate fairly across competing needs -    divid and conquer: undermine equity o    stratify risk pools •    us v them ideology o    shift costs to those at greater risk (poss to identify those at risk and better respond to needs)

overview of argument -    special moral impc of health o    opp range, capabilities •    connected to Rawls’ theory •    from several philosophical perspectives, if one could devel claim that funl right to protect opp range of indivs (Raels ‘equality of opp’), then argument that way to think about healthcare is protection of opp range… -    obligations of justice to protect health o    obligation to promote fair equality of opp -    use predictive medicine to better protect health, not shift costs or deny coverage -    beware temptations of market – evidence, not ideology -    intergenerational equity/justice and sustainability of transfer schemes o    shrinking working age population makes more difficult to finance health care syst in Europe

FEO Account of moral impc of HC -    disease and disability are epartures from normal function

Justice as Fairness -    hypothetical contract (Orignial posn) -    simplifying assumption o    normal functioning over lifespan -    index of primary social goods -    three principles o    equal basic liberties, fair value of political liberties o    fair equality of opp o    difference principle (restricting range of inequalities permissible in soc)

Extending JAF to healthcare -    JAF simplied to case when there is no disease, disabilityt or premature death -    Open to criticism: - arrow sen, others

Whitehalll study (Marmot and Shipley, 1996) -    all-casue mortality by grade of employment – whitemall men 25 year followup -    socio-economic gradient of health -    not explained by health risk factors we usually talk about (such as lifestyle choices) -    hypothesis

(Justice as fairness) JAF flattens gradient

Compliance with 3 Principles of Rawls -    flatter than

theory extends in surprising way as to why justice is good for health

Accountability fo reasonableness -    four conditions of fair process o    publicity: reasons or rationales for imp decisions and indirect limit-setting structures publicly available o    Relevance: fair minded people (relevant stakeholders) agree rationales are aimed at pursuing appropriate patient care under resource constraint o    Revisability/appeals: fair appeals procedure o    Enforcement/regulation

-    REF: Daniels, Sabin Setting Limits Fairly, OUP 2002 o    Moral disagreements surround many decision, don’t have agreement on moral principles that resolve these disputes, so must fall back on account of fair process that minimises choices that are made

Shifting costs to ill or high risk -    argument for Actuarial Fairness – purchase health security at actuarially fair cost o    US substitute insurance concept for moral concept o    People should buy security that reflects real risks o    It should not apply in health setting -    Actuarial fairness is not fair – if protecting health is social obligation -    Burdens according to ability to pay, not need: principle violated

RAND HIE: SOME NEGATIVES DAVIS, J. HSR 2004, 29: 1219:33. -    Adverse effects on low income and high risk indivs (Rassell, 1995, NEJM) -    Lowincome high BP: better control with free care:; lower risk of death for high risk

Risk Stratification: other costs -    culture is created by institutions, instits can encourage or discourage and reduce mutual support – what’s in it for me, rather than us’ spreads like cancer -    stratifying insurance schemes not only shifts costs to ill but undermines more gen concerns for social justice -    not only will access and burden be modified, but content and quality of benefits will stratify

In Europe, 50 yrs of sharing and caring, in US has promoted division and self-interest. Contributory factor to recent US election as well as others. In US until now, one of good thiungs has been universal health care provision for elderly – not sure whether will continue

Use predictive power to improve health for all – other parth -    respects social obligation, equity -    estab priorities using accountability for reasonableness -    improved preditctive power may have efficiency gains -    evidence based improvements, compatible with market

Challenge to sustainability -    societal aging, changing worker to elderly ratios o    China most rapidly aging popn in world o    Dramatic societal aging in Several Euro countries – shrinking workforce in Italy, elsewhere threat to pay as you go financing of universal health care -    Technological cost drivers – medicine is not what it used to be, costs more everywhere

Challenge not from predictive medicine, but promoted as challenge, by rise of aging popn and reduction of ratio.

Jean-Francois Mattel University of Nice

Devel of health care since mediaeval system intended to take careof needy – workers -    was a social issue, now political

hospitals previously funded by charity -    now funded through solidarity

why is there a philosophical issue? -    defn of man, solidarity -    moral prob on defining human and fair sharing in terms of human dignity -    different to compare health care systems around world o    instruments used o    current used indicators are infant mortality and life expectancy – which relies more on social conditions -    health care system o    defn: range of techniques/practices intended to produce health in same way as we produce wealth o    metaphysical/ontological: what is health? •    Material asset or something different

Can health be seen as industrial product – something that can be traded

Syst wich distribs health – hc systm –more different to control, since has many parts and increasingly economic, indl, and financial components -    which is wher political comes into play

central Q: equality of access for patients and legality of assumption of HC costs

perhaps 3 main axes: liberal (US egaltarian / Euro), inegalitarian

tendency in Europe to think syst is preferable to US, since has concept of solidarity that underpins it -    link to historical idea of charity

society has moved HC into social space, rather than religious space -    social spaces collective, whereas religious spaces are individual

Durkheim – collective concept of solidarity

How can justify solidarity and influ in HC?

Imp in HC since calls into q, social prof and human dimension, but also biological and physical concept of human.

For first time in history, biology become social concept in terms of how society assumes costs of HC

Can bring demands of health into HC and move beyond idea of HC as idea of solely doctor to patient. Horison of perfect health – Utopian society – everyone perfectly attended to. – to allow maximum of solidarity

Increased medical component of science and way that HC incly based on technology, gives new way of analysing human and providing HC.

Belief in indiv dimnison that is absolute – human dignity

Need some distance – philosophical q

Requirement for human dignity and solidarity is devel of human beings over 300 hrs.

Anthrop sense – modernity – (not go into postmod) – converging processes -    new kind of socialised human being -    First charact: progressive secularisation of religious concepts o    eg. Religion based on Judaism or Greece, man only perceived of own existence through religion. No right to health care. -    Second charca: de Toqueville – inc socialisation of man, led to tensions between social and moral requirements. Political arena where they are reconciled -    Third charc: social reqs of today, express on individual needs, rel between individual and social sphere – social demand as collective -    Fourth charac: technical development leading society. We ask sci and tech to solve social and medical problems

Change to modern sense of man

Second of these claims is that concept of man incly reduced – focus on body reduced – what the body requires

Think philosophically, but also consider human dignity and relationship to body

Does a dead body have dignity or is there a higher concept in play here?

Here we talk about dignity of socialised man

Tension between ethical concept of dignity which, to some extent, has metahistorical/metaphysical concept and need for using body, which means that it naturally comes to disappear

Need medical correctness as equal distrib of care to whole of body or to whole of society

Problem: right to medical care nothing more than political right

Rawls: Demand for right is political demand

In 21st century, law is social demand

Mankind today and societies are trying to provide medicality

2 rights: medicality and sociality

people seem to want a perfect health or life

to have this is to put of death entirely

best to have perfect qualities as human being and to have medical care as close to perfection as possible

producing health as producing products

want a body that will never break down

cannot have perfect mental states, but people want perfect physicality – beauty (ME: not easy)

WHO defined health as ideal health -    state of complete well-being physical. -    Can we attain perfect well-being?

Corpus sanum, not necessarily linked to mens sana

Demands of society a great deal.

Body as product

Product of medicine – from birth onwards, medicine acts on body With GM goes beyond that

Locke distinc between ‘property in’ – obligation to respect people and ‘property on’ – material goods

This health is material property in Locke’s terms – not an inalienable right, like freedom, more like commercial article – privileged to have

But cannot say that a body is good or bad in pure ethical terms

Is it better to die as soon as possible after born to avoid suffering, or the contrary

Our societies are no longer tragic societies, but rational

Philosophical question: can we eliminate all tragedy from human life? -    only way out is death

need to avoid tragic dimension to life

we want perfect mental health and bodily health

we want to look death in the face

and look tragedy of life in death

Aristotelian problem: act of living..

Can we have a happy life in which we aim towards living together in a society, moving forward as society?

In third millennium societies, we are trying to make the challenge of taking biological life and giv it good life in Aristotelian terms -    begins with the body and medicalisation of body

socialisation of medicine is medicalisation of the body

man’s body is locus for application of our technologies

economic dimension as healthcare costs

politics makes final decision on this

fact that man becoming instrument, not just medical or social problem, but a moral problem

if man no longer thinks of self as divine create or natural product or man, but part of social mechanism, how is he then to have a body that no longer belongs to natural world?

The body is more and more a technical object. It is something mediated through the technology.  So man becoming something that technology acts upon. Benson: man is constructing himself nowadays and constructing new way of making himself. The body is something we build. Try to give it perfect life/health.

Back to solidarity – guiding threat.

Justice and solidarity: what are they? No longer religious, even if religion is background to all moral thinking. Morality is articulated through society. No greek term for society. Greek words that come close talk about relationship between people. Our modern world needs more solidarity – and more demand.  This means that individuals often unhappy, when they don’t get what they want.

Is our modern societies, whatever decisions, whether will, in allowing soc to determine way medicine acts on body, whether will regulate that or leave it to the market.

Are we going to see market acting in way that Adam Smith described – hand of market – or hand of politics making sure everyone gets health care.

Remarkable that our society is having to deal with this challenge. Not only recognising everyone’s equality before the law – as political, social terms, - but everyone’s equality in medical/bodily terms.

Can our modern societies, where popn aging, can they give healthcare?

Will Genetic Predictive Testing increase inequalities? The Psychl Theresa Marteau Healthy Psych Section, Guy’s Campus, IoP, KCL

How do people respond to predictive genetic testing Must understand something of context where will be introduced We all know that the rich live longer than the poor. This is likely to increase.

Self-efficacy to stop smoking.

Hall and Marteau, in prep – people of lower education, feel less confident to stop smoking

Genetic Predictive Testing for Heart Disease -    websites sell this, but little available from health service

Anticipated that gen test incorporated into HC syst in 5-20 yrs.

Imp to consider now, how people will respond on impact to justice of implementing tests.

Huge expectation that will impact people Gramling et al. 2003 – Exepcted motivational impact of predictive genetic testing for cancers -    asked what they expected to see in their patients, if they underwent testing -    expected that those with risk would be likely to attend screeing, likely to change diet and stop smoking

Will gen pred test inc inequal? -    depends on social patterning of uptake and motivn to change behav o    uptake 1: hypothesis: t difference in uptake between those who are leadst and those who are most deprived is larger for gen predictive test than other pred test (given preexisting socially patenting of expectations and need for informed choice with gen testing) o    hypothesis 2: motivn to change behhav following testing will be lower in those who are most deprived (due to pre-existing socially patterning of fatalism)

role of media in creating hype -    Dobias et al 2001 – womens magazines – mammography messages in women’s magazines aimed at different education levels o    In magazines asso with low education, more likely to be persuasive and less likely to discuss uncertainties

Domenighetti et al 2000 – impact of info on willingness to accept screening -    more we talk about people of uncertainty, less interest they havein attending screening -    when discussing gen screening, emphasis on informed -    those most deprived, less interested

Schwartz et al. 1999 -    mammography ptake in women at high risk for breast cancer (US based study) -    randomly allocated women who were high risk for breast cancer, to receive counselling session or Control o    found that high educated, risk counselling had no impact, but for low level of education, learning in detail mammography rates went down.

Will gen pred test inc inequal? -    hyp1 o    Evidence to support •    Expectations of t benefits of screening higher in those who are more socially deprived -    Hyp 2

Cartoon caption: “Because my genetic programming prevents me from stopping to ask directions – that’s why!”

Perceived controlover causes of illnesses -    Shiloh, Rashuk-Rosenthal and Benyamini, 2002 -    People feel can control, if perceived behavioural and progresses lower to enviro and finally genetic

For chronic gen conditions, gen part only one aspect

Multi-factorial condition emphasse gen component

Senior, Marteau and Peters, 1999 -    parents perceived casues of raised cholestoral in their newborn babies, deterred during screening -    where parents thought was genetic problem, far more fatalistic about the problem -    whereas when not perceived as genetic, felt that was something not of concern

Debate

For Norman Daniels -    2 complexes of ethical principles: Rawls justice and 4 conditions of fair processes -    are they separate?

Answer: -    work of philosophers in 1990s, unsolved problem of rationing, how much to give to specific groups? -    When should we trade best outcomes in the use of a resource, in favour for just outcome? -    Do not have philosophical framework of consensus -    Need to suplemetn gen framing of problem of distributive justice with fair process -    Gen framework of fair process

Question: Alex Mauro -    for Norman Daniels -    in view of B Baertschi, process is to flatten gradient, but process is tricky since, if some screening is efficient and if implemented in context of gradient, then expected to steepen. It is as if good quality screening is especially prone to being egalitarian. How can we bring in a correcting factor in name of flattening gradient?

Answer: -    gen law in HC research that medical technology are taken up in proportion to socio-economic status -    Marteau argued that predictive testing might be even worse than established knowl -    The response: more institutional effort from within and outside HC syst to educate people about false aspects of genetic determinism. – health literacy programmes -    This would be consistent with view of health as social product, not just as medicalisation of body -    Evidence from social epidemiology is that health in distrib of populations is primarly effect of social determinants and public health measures -    Couple of other comments on prof Mattei’s paper

Marteau -    if you don’t formulate something, then you don’t set out to try to find it. Solutions in many places, but what one wants is an inequality of resource, when setting up programmes o    spend more resource on those who are more deprived -    education is umbrella term. We know self-efficacy much lower in these groups, so need more help.

Daniels -    Prof Martau focus on threat of inequalities -    Much as I am interested in reducing health inequalities, especially when produced by many unjust XXX, always complex normative problem as to how much to give to worse-off peoplee. We do not have social agreement on this. Itself calls for fair process. Supplement gen view that inequalities are bad, because always faced with specific problem with how much benefit you give up for some people to reduce benefits for others

Ruth Chadwick -    for Marteau on evidence on fatalism -    statement ‘if I have familiar hyper….’ How can one distinguish within that between those who think that’s just what it means to have that condition and a fatalistic attitude, which could be quite different

Response: Mareau -    yes, might be a lack of understanding. -    Was not my study! Similar criticism I have -    One would want to have more than one measure, interview people and understand how that statement is ustod. Better defn of fatalism and use range of measures. -    Was only study that measured education.

Question: Mattei -    diffc between solidarity and charity -    seemed to imply that religious spaces were individual, but lose out on a lot of judeo-christian trad with God’s relationship with individuals -    misses fundamental idea of church -    interested to hear Prof Daniels response too

Answer: Mattei -    distinction isn’t just a reflection on Christianity, but type of help can give to others. True that Christianity has community dimension – caritas – love for other people. What history has show is that when first establishments set up for needy and sick, did supply solidarity, but based on Christian idea of charity. Did welcome non-christians, but nonetheless something that happened within religious sphere -    social sphere has taken over. In a religious relationship between different groups or person and group, are different relationship to ones they have in impersonal relationship between person and group under solidarity. -    In modern societies, have hundreds or thousands of indivs, different to develop social network. -    Prof. Daniels said that social but also political forces directing what goes on.

Norman Daniels -    Agree that religious traditions have community value. Hebrew for charity ‘sadaca’ – righteousness. But is different. If I don’t give charity to some individual, they don’t necessarily have a claim against me, it is at discretion of charity giver, whereas rights involve reciprocal duties. Domain of justice a little different from charity. -    Framework of rights reveals that where diverse popn, merely as citizens, we owe each other as deserving of basic cares.

Question: -    charity and solidarity – one of imp aspects is that solidarity comes from workers movement. Autonomous action in charity, not in solidarity. -    Moving towards individualist soc and lost some value -    Difference in some charities – Muslim: fundamental value -    Careful of Eurocentric view -    Question for Daniels: mentioned market aspect and solidarity system, question about pharmaceutical market. -    Given that market is maximising profits, down side. Taking an outside regulatory sphere. Not helping to modulate practices for access

Answer: Daniels -    complex problem with pharma -    have hd this issue close on pricingof endoretro viral treatments. -    Pharma made concession by providing generics -    Decided to lower prices. -    What drugs get developed and for who? -    Njeed to be revisited

MATTEI -    would all like to see most egalitarian distribution of justice -    this is something inalienable, cannot talk about justice without fairness. -    Can we have justice really or is it just utopian ideal? -    Is it something we can concretely have? -    Saying that market is selfish, must ask whether is individuals are selfish -    Niave to say we have some magic wand to solve this problem

Question for Marteau -    data suggests that more detail of info, the more it risks to increase t inegality -    to poor people give simple messages, to richer, give sophisticated, which also increases inegality of knowl? How deal with this problem of communication?

Answer -    this is one of tensions in this field -    magazine analysis shows that simplistic messages to lower levels of education -    highlights tension between individual autonomy and realising public health outcomes

Daniels -    what we owe each other, not just what it would be nice to have -    connected to broad and confused defn of WHO on health -    real people in HC don’t worry about that defn, they look at morbidity -    protecting health and not all aspects of human well-being -    I don’t think talking about groups is an abstraction -    Markets are not simply individuals, they are shaped by rules and regulations to ensure they avoid certain failures -    One of problems with pharma is that IP law may be stacked in favour of houw drugs get developed

Access to healthcare, in particular new medical technology

Yvon Englert

Thoas Perneger

Imagine trying to screen for cancer in over 50s, test A = cheap and available to everyone, avoid 1000 deaths; or test B = more sensitive, can only give it to 1 in 2, save 1,100 lives. Which would be preferable? -    thi was asked to doctors in private practice and public and asked how they would choose for test B – eg lottery, or medical orgs, only a minority choosing test B -    Med Decis Making, 2002, 21: 3-8 -    Doctors were prepared to lose 100 lives in order to preserve fairness -    BMJ 2004; 329, 425-8 o    Would you allow XX into intensive care? o    Woman in A&E and feels bad o    Do we do it? o    Might depend on disease o    Only one bed available in intensive care, or only 3 o    Describe personality of patient. o    Whether is anxious or not o    Swiss doctors split down middle o    Asked 200 doctors and 55% said they would send patient to intensive care. If 3 beds available, 59% if 1, 45% o    Somebody who is being brave is twice as likely to be admitted to intensive care as someone who is anxious and depressed

10% of doctors said did not want to answer the question

Telemedicine, virtual reality and robotics, new technologies for an optimised health care. Luc Soler

The First Keyhole surgery course

Is patient clinical case or a person? How teach future surgeons if don’t really have contact with patients? When dealing with patients, you might see inturns who are with head doctor and some consideration not given to patient Reduction of surgical nature of medicine – smaller incisions. Direct contact between surgeon and patient, beginning to diminish Operate using tv screens or robotics New imaging technology – MRI scanner Helps for greater communication with patient Reaching areas where human patient becomes digital data Technological developments -    Virtual Reality for Tumour Analysis -    Take 3d medical image – computer tomography, magnetic resonancing, set up digital clone -    No risk to patient since working on virtual patient -    Prepare surgery on this basis -    Simulation of surgery -    Pre-op phase helps for actual op, since info can be superimposed onto patient. So , through robotics, willl get to point where levels of care will rely on these procedures and can rely on qual of care too Medical Imaging -    from CT-scan or MRI of a patient -    better tools for visual

Using algorithms, can build up representation -    allows 3D model to be visualised -    software name: Cult3D (works with IE)

made poss by advances in video games and computer games -    computers now have 3d imaging cards within them

used for explaining condition to patient WebSurg – www.web-surg.com -    World Electronic book of surgery -    Financed by various people. Only free site -    This software is freeware

ME: v intrereting software. Look into

Capacity to go backwards within a procedure and start again

Being used in Geneva and Zurich for surgery planning

Also exists as network system – can be shared with various experts

Helped for info sharing

Real time force feedback simulation -    probe includes feelings of resistance -    INRIA – link again with computer games – Project EPIDAURE

Intra-operative VR surgery

Interactive Augmented Reality

JAMA November 2004

Superimposes image of surgery procedure so can see that eth is being done correctly

Huge surgical advance

3D image doesn’t move when patient breathes – current limitation being dealt with

fully automated augmented reality

LNCS vol 3150

Robot: Telesurgery -    2 robots, 1 society : intuitive surgical -    Da Vinci and Zeus machines, now merged -    New solutions: Artemis, Hitashi, Sinters… -    Extremely expensive $1m (access issues) -    Surgeon can be decoupled from OS -    Robot controlled by -    Lindbergh Surgery, sept 7, 2001, Nature -    Idea not to replace local surg team, but support -    V expensive, since fibre optic transmission time across atlantic costs a lot, so not really poss at mo

Visual Servoin -    increased automation -    control instrument remotely -    can take into account t breathing of patient -    instrument moves to follows beat of heart -    microrobotics and nanorobotics – Norika3 – swallow a pill that will look at what the body doess -    Toshiba (Japan) 5 cm tube trying to make smaller -    Intelligent Microsystem Center (Korea) - biomimetic

ME: this is a good argument to reject naturalness of human

Future of surgery?

Automated procedure -    mistakes of movement can be re -    Robot for a better control of the surgery -    Under the control of surgeons! -    Cartoon: robot surgeon

Acess to health care: Patients rights as a tool for priority setting in Norway Ole Norheim, Uni of Bergen Part 1: background -    priority setting in practice: experience from Norway -    assessement according to t ideals of deliberative demorcaty o    Norheim OF: Report on Norway in Eds Ham and Robert, Reasonable rationinign, OUP, 2003

Part 2: recent development -    patient rights as a tool for priority setting

A short history of priority setting in Norway -    1987: the Lonning I-commission and waiting list guarantee o    set priorities according to severity of disease -    1990: expert group developing national clinical guidelines for bone marrow transplantion o    practical priority setting o    was emerging new technology, costing a lot o    many patients competing for this scarce resource o    principle of evidence as basis for rationing o    where firm evidence, priority stronger o    received supp from ministry and health council -    The Sandberg case, 1993\ o    System broke down. Said no to a patient, whjo happened to be brother of a TV personality in Norway, led to media storm, decision challenged, and minister for health backed down. Several cases like this in 1990s. -    1993: publication of national guidelines for anti-hypertensive treatment informed by cost-considerations o    arguing that not all prevention of CV disease should be provided – higher threshold, based on cost and personal resources to screen and treat -    1997: controversies encompassing new prescrip drugs o    Aricept for Alzheimers disease o    Forsamax for primary osteoporosis -    1997: The Lonning II-commission o    adjustment of criteria for waiting list guarantee •    severity of disease cannot be main concern •    Rawls difference principle: distribution favour the worse-off – easy to see cannot follow this principle extensively in special cases. Eg. Terminally ill cancer patients should not have high priority. Medical outcomes also considered and balanced against needs. Cost-effectivenesss introduced. o    proposed procedures for defining core services o    based on t principles of Accountability for Reasonableness o    compromise between competing values: severity, cost-effectiveness, medical outcomes. o    Inspired by Norman Daniels work o    Ministry of health did not takeup idea of implementing procedures -    1997:Philosophy Norwgian centre for health technology assessment estab -    1999: Norwegian govl appeal board regarding medical treatement abroad established o    as a result of lobbying minister of health on specific cases -    1999: Patient Rights Act o    specialized care

Evaluation -    what procedures are used to determine whether health technologies should be funded? o    No estab procedures o    Highly specialised interventions centralised o    Diffusion of technologies is the rule

Government isn’t actually regulating things

Fear that new technology is being easily introduced, might replace other important services that our HC syst should provide

What is t role of t different instits in these procedures? -    rationing was almost a non-existing health policy issue -    regulation is centralised, funding is decentralised -    little research from Norway on houw such decrentralised decisions are made -    centre for HTA: evidence based assessment of new technologies -    Norwegian Medicines Control Authority: Reimbursement drugs, evidence from cost-effectiveness studies are required

What knids of evidence do these institutions expec, req, or consider in making funding decisions? -    exptl or investigational treatment vs established treatment -    t evidence hierarchy: evidence from randomised clinical trials, systematic reviews and meta-analyses -    evidence from cost-effectiveness studies seldom cited

What ‘standard of proof’ do t institutions expect to be demonstrated in agreeing funding? -    no govl institutions have explicitly formulated ‘standards of proof’ -    Oncology: two or moroe RCTs before a new treatment modality is regarded as ‘established’ -    This standard was challenged by Matheson case, 1996 o    Woman aged 50, breast cancer with metastasis o    Received high-dose chemo with stem cel support in Sweden o    Evidence: Bezwoda et al 1995 o    Demined reimburesment from National Insurance Adminsitration o    Appealed to Minister of Health, appeal accepted o    But only in this case, not for comparable cases o    Oncologists objected: violation of t principle for equal treatment for equals

What appeals mechs ar avaialbe or reviewing decisions? -    appeals mechs for coverage decisionwihtin con

Eval of pririy setting in Norway –prior to 2003 -    much high level activity – principles well established -    political and admin reluctance to introduced proceduires and institutions with a mandate to make explicit coverage decisions -    Patients Rights Act not really implemented o    Now change in Legal system -    Appeals mech estab -    Technology assessment playing minor role -    Conclusion o    Stronger institutions will inc demand for more and relevant info o    Implementin right to necessary health care, a way forward?

Part II

Implementing patients rights as tool for priority setting in Norway Experience from Bergen: largest uni hospital Bottom u

Norwegian Patients Rights act 1999 -    obje: ensure pop equal access -    no sepecifiction on right

Financial sanctions -    since Sep 1, 2004, every patient has right, if not patient free to seek service at other hospital or abroad and regional health authorities wil reimburse t expenses

Implementation -    Wstern health region, -    Consensus based guidance for patients rights -    - based on accepted criteria -    Development by specific group -    Output: rough ‘guidelines’ for all relevant patient groups and interventions with recommended max approp waiting time -    Process:

Aim of project -    strengthen provision of well documented and reasonable cost eeffective health services to all patients with serve conditions

Priority setting model -    core services that should be provided -    elective necessary with right

Results so far -    16 guidelines from different specialistes

-    available for all health professionals on intracnet of hospitals

egs. -    rheumatology

next steps

1. evaluation, adjudtement and comparative analysis

1.    severity of diseas 2.    effectivness of technology 3.    reasonablness

2. Hearing process

3. revision 4.  publication: internet (accessible)

Conclusion: -    rights to core services can be defined through delib open process -    requires consider of who is worst off, clinical outcome,s cost-efectiveness, and qual of evidence -    but leaves room for indivd deiscretion -    openand explicit guidelines prov an opp for starting process toward fair and legit priority -    though not yet evaluated

Genes, food and drugs Ruth Chadwick

Outline -    new technologies have led to revisitng of t individual-collective relation in public health -    and to questions of their impact on health inequalities

related to political will and underlying presuppositions and inconsistencies in policy that can affect whether new technology can inc or dec equality

partic ref to individual choice

Issues -    opp costs: what else could we do with the money? -    access and benefit-sharing Choice? -    upholding of choice coincides with new forms of stratification -    no consistency in argument -    examples: nutrigenetics, obesity, and fnl foods

Two white papers (UK two strategies -    “we will learn more about t genetic featuresof common diseases, such as heart disease and diabetes and t way exeternal factors such as diet and smoking interact with our genes to increase t likelihood of developing a given diease” -    “There will then be t option to test peopole for a predisposition to diesae or a higher than normal risk. Trreatment, lifestyle advice and minotriing aimed at diease prevention could then be tailed appropy to suit each iniv, “Our inhertance, our future” -    Choosing health (2004) o    Sets out stratefy for action based on principles of informed choice….identifies how people can be empowered to make health choices. It sets out how health can be supported and improved in jey environments such as restail outlets local

First white paper, might have thought wil get individual advice in continuing to smoke, more rrecent one is to try to prevent them from smooking

Pulblic engagement -    2003 – traces of deficit model in public understanding o    people don’t understand, but if they had, they would be able to make approp choices -    2004 White paper – shaped by public consultation o    so that individual preferences have influenced development of policy document, but still hang on to view that info will empower people to make healthy choices. Though recog that not simple matter of giving people info and then make healthy choices, because of complecity of people’s lifves Key question -    how do these strategies relate -    impact on health inequalities -    what notions of perosnalised health care and choice are at stake -    2004 white paper talks about false dichotomy ‘nanny state’ – ‘freedom’ can imply neglect

Key example -    food and diet -    nutrigenetics -    food labelling -    obesity, diabetes

Nutrigenetics -    study of individual differences at genetic level (SNPs) influencing response to diet (whole genes or part)

Nutrigenomics -    aplic of genomics in nutrition research enabling assocationbw nutrients and genomic factors

info leading to applic -    understand how nutrition influ metabolic pathways -    understand how this goes way in diet -    understand how individual genotypes are influencing factors

Context -    public perceptions of genetics -    novel foods, eg gm -    prevailing ethical paradigms o    individualism and choice

Public health -    will nutrigenomics have signif public health benefits -    different between nutrigenomics and pharmacogenomics o    the other great promise in the 2003 white paper

pharmacogenomics promises individualised presecribing on basis of genotype -    enable avoidance of adverse reactions -    genetically informed prescribing (type of drug and amount -    greater safety and efficacy -    patient stratification -    signif differences to nutrigenomics o    food stuffs have many different effective ingredients, drugs are much greater characterised, acting on particular pathways o    more diffi to predict effect of specific foods o    promises of nutrigenomics more diffi to establish

testing – empowerment? -    single gene disorders (huntingtons) -    suspectiability testing o    idf recessive genes o    idef genetic makeuip which may increase risk of developing common diseases (heart disease and some cancers) -    pharmacogenetics testing o    medicine response test -    nutrigenetic testing (a form of suscpet test) -    empowerment depends on number of factors (partly due to interpretation, options, and whether people want them or not – right not to know)

Screening -    testing versus screening o    testing: of an individual through referral or self-referral o    screening: ascertaining of prevelance of genes in popn -    criteria for introducting screening o    important condition o    acceptable and reliable test o    scope for action

conditions -    PKU for newborns good example o    Phenylketonuria allows diagnosis to be made and if positive, diet can be adjusted o    However, is single gene disorder and nutrigenetics wont offer that sort of info. -    Diabetes o    Better candidtate -    Obesity o    Genetic Factor A – predisposition to obesity with food X o    Case for screening? o    Importance/scope for action?

Individualism and public health -    personal pills and personalised diets? -    More individualised t promise, t more collective action is required

Acquisition of info -    association studies o    popn groups o    specific disorders -    national dietary surveys o    established for many years, but new twist with genetic element, require setting up large genetic databases -    genetic databases

WHO (on genetic datbaseS) -    ‘..t justification for a database is more likely to be grounded in communal value, and less on individual gain….it leads to t question whether t individual can remain of paramount importance in this context’ -    ‘the achievement of optimal advances in t name of t collective good may require a reconsideration…

Alternative in 2004 whitepaper -    ‘environmental’ approach o    healthy choices (encourage people) o    labelling (Clear) o    restrictions on advertising (of junk food) o    children as a special group -    undelyin principle o    informed choice o    two qualifications •    children •    responsibilities to others (smoking) Inequalities? -    how this approach deal with? -    Increase buren of responsibility for health? -    Whose choice and for what?

Autonomy and choice

Identity – Individual autonomy –    utility – responsibility

White paper operates with notin of ‘responsible choice’ -    if people have info, they will b helped to make those choices -    though antoher notion, which does not arise o    choosing one’s identity: the sort of life one wants to live – which might include not wanting not to know genetic info, or choosing particualrl food style or lifestyle

implics for info -    food, body and self -    what sort of person do I want to be? (eg. Vegetarianism)

Fnl foods -    specific health-promoting or enhancing foods -    regulatory appracoh – highlights importance of freedom to market, subject to safety o    allows rejection in euro, if unsafe, though not whether effective (drugs must prove safety and effectiveness) o    problem: fnl foods targeted at partic audience,s but not like drugs prescribed by professionals, are available in shops; can be bought by anyone who might not benefit -    case by case approach o    tf. No mechanism for looking at… -    potential problem identified with fnl foods – target groups and overdosing -    e.g. cholestoral lowering margarines and yogurts – if same ingredients in many foods, poss to overdose – risk assessed on product alone -    cannotbe solved by labelling alone -    plus or minus nutrigenetics? -    For fnl foods, no drive to protect children as sep group -    Fnal food might be GM

Benefit-sharing -    turn towards sharing benefits of genomics (HUGO 2000, 2002) -    what counts as benefit? -    added value? -    Sharing of burdens? -    Return to issues of class

We are seeing, despite explicit ref to informed choice, return to class divisions

Rights and class -    financial times 20-11-4: ultimately, t worldwide reg push against smoking is being driven by a rev not just in rights but in calss… a class syste is solely being reereced on new bassis, brining with it a new and narrowe understand of rights o    by trying to persuade people to give up smoking, is disproportionately targeted against poort. Same can be said about food styles. – less affluent groups are targeted in strategy. o    By looking at extent to which these policy development will inc/dec inequalities, must look at other strategies, which say certain food choices have to be made. o    Not that people will make more informed choices

It widens genomics divide, but need for joined=up thinking in the two polices

Debate

Question: Norman Daniels -    to all 3 presenters -    first, Norheim, Matteson case, where min of healh backed down, the Bazooda study was later proven to be a fraudulent manipulation of evidence, and was a case that was reviewed in US, Blue Cross, Blue Shield debate – split decision 8 to 7 (scientists voted against it and managers voted for it) – when one capitulates to public, politically manipulated demand, often have signif harms to popn and huge costs. In this case, survival not increased by bone marrow transplant, but decreased -    hype of nutrigenomics might lead to experimentation on popn based on prospect for benefits -    Soler’s presentation was innovative, but problem of distincc between human subject research (requires clinical review and IRBs) and innovative therapies, which do not. o    The 3D tech does not require procedures -    What is case for ethical review for innovative technology

Response

Ruth Chadwick -    agree: fnl foods introduced on case by case basis and nobody is thinking about overall consq of mass consumption -    for nutrigenomics, willl not have enough added value to deliver and wil become fashion accessory for few, real agenda is to get people to make responsible choices -    pharmacogenomics big demand, so bigger issue

Norheim -    medical truth have a half life of five years: be sceptical of medical evidence. -    High standards of evidence a wise approach

Soler -    already performed some evaluation -    ethics: new technology bringing separation of physician and patient -    cannot forget patient is still there, so must see them

Comment rrom Y Englert: Daniels claim v important, current distinc between pharmacology (strict exptn) and expt of therapies -    in Europe, reimbursement for

Question: fro Y Englert: -    poss risk in strategy of prioritising by structure of health care (for Norheim) -    diffi and dangerous for minister to be the one to decide -    also risk that political decision that places framework

Question: for Norheim -    high standard for evidence, reasonable to prefer benefit with high certainty than low, but assumes that research questions are equitably distributed -    research questions are inequitable -    link between framework and research agenda

Response: -    might have problem -    acknowl different criteria in law would be need to be interepreted differently. -    Acknowled different equal disttrib in funding for research -    Framework of accountability – give reasons (scientific) -    Ethical arguments on severity of disease is another argument

Question: -    context in which people make decisions on food important -    food deserts – areas where no food shops and some less than optimal foods -    option for healthy choices has gone down -    changing the context?

Answer: Ruth -    reliance on labelling totally insufficient -    person that eats, not always person who buys -    gov white paper does recog that labelling not suff -    though not clear how help people to make choices -    bear in mind that eveidence of healthy choices is always years out of date – national dietary surveys – produced 5 a day policy – took place in mid-1990s.

Question: Theresa Marteau -    for norheim -    extent to which there is a tension between informed choice and thinking in those providing health care that there is a right choice -    nobody wants to talk about weaknesses in medicine –s ometimes doesn’t work -    people offered pills and potions, but chances are will not benefit -    if there was more of an informed choice, people less interested in choices people made, might be less demand for things

Response: Norheim -    studies on giving info -    BMJ some years ago on managing market -    Prostheic problems -    Prov info about risks/benefits of different interventions, changed demand for the services

Question: Euopean Commission: Health Technology and Informatics -    we are more and more influ by genomics -    interested in projects on popn data -    Question for Chadwick o    Puzzled by dichotomy o    enviro approach sounds like eastern religions. Don’t go into level of atoms, just believe in holistic truth that there are good and bad foods o    other view that analyse to level of gene o    why are we being put in this dilemma o    we have indogenous and exogenous determiniant s(nature/nurture), need to understand from level of cell and synthesise. We have v different worlds with different ontologies, which are sep: molecular biologist, clinicians, and health care people o    each live in their own worlds o    need vertical integration o    seems like policy based evidence, rather than evidence based policy

Response: Chadwick -    need for joined up thinking -    should not look at these things in isolated way -    these 2 policy documents have done that -    not either or, hwr, in case of nutrition, serious question about whether could get suff added value, by going down that research route, over and above generliased dietary advice -    not an argument against genomics approach per se, but in nutrition much more diffi to be clear about cause and effect

Question: Precise philosophical model being discussed on patients -    autonomous informed indivs, but implies info supplied in good faith and checked by publishers -    closer look at accuracy of that info -    problem not having access to it, but having too much info -    in  NEJM article on access to health care, something Clinton admi had raised – access to Hc discrim -    report rewritten twice by next admin in US and new version said something completely different – political interference -     also market interference on report, not pharma industry, which had right not to publish resultst hat didn’t suit them, rather, where info is a merchandise, new info sells best -    eg. New diets being sold to us -    should be talking about autonomous and correctly informed citizen -    Question: how you manage access to info for citzen and make sure is correct?

Response: Chadwick -    serious problem -    diet: one week red wine is good for you, next week it is not -    channels of info need to be examined -    issue about scientific responsib in communicating with public 0 increasingly addressed -    media responsibility -    different for citizen to know where to turn

Question: -    for Ruth -    issue about return of class -    what kind of class is this -    have mentioned various sorts of social stratification -    eg daniels – if genetic diversity is treated only through an actruarial model, might have unwanted genetic stratification. Marteau described social stratification in atts to genetic testing -    so what dimension of class is particuarlly concerned about?

Response: -    different interventions could impact on this in different ways -    social stratify: policy is reinforcing social stratify, since health behavious are those associated with poorer groups of soc -    problem with this is that, if you take this approach, - voting against lifestyle choices – sits uneasily with purported unholding of individual choice assoc with genetic testing, since suggests that indivdiualised medicine approach willl not be to support particular choices -    both strategies wil reinforce social stratify, though one explicitly claims to allow individual choice

Response Norheim -    ban on smoking in restaurants and bars since Jan and argument was about workplace rights -    this might also be a classist debate

Response Ruth -    this argument also used in UK debate, but proposal is that will still be allowed in private clubs, so employees in private clubs not protected

Response Norman Daniels -    availability of info -    Ministerial sumit in Mexico, WHO health systems research -    One of proposals is interenational registryo fo all clinical trials and public assurance of acess to all clinical trials -    Could not have propriety management over info – couldnot manipulate clinical trial info -    Establish a public goods environment for management of these Its.

Response: Englert -    Registry of medicines to provide all data available -    Cannot be some parts left out for negative result -    Transparency issues about study itself and decisions taken over results orientation -    These are difficult to monitor

Question thereas Mareau -    changes in UK trying to improve, where might be divisive -    partly a semantic issue -    choice socially patterned and behaviour socially patterned -    just because people are engaging in behaves doesn’t mean is a choice -    in UK at any one time 70% of smokers would like to stop smoking. While engaging in behaves, perhaps would like to stop.

Response: Ruth -    worth some consideration, but main concern is not reasons why people make certain choices, but view that policy has about what choices people ought to make -    must look at what policy makers mean when they mean choice and upholding choice

Protection of medical and genetic data Heidi Diggelmann Olivier Guillod

Dilemma of Predictive Medicine Y Englert

Medicine evolve to predictive and to collective Move from single gene to multi gene Pre-clinical diagnosing been around for decade or so, since being able to detect for unborn child More complex when trying to deal with diagnosis of illness, which hasn’t yet appeared, but feared by patient or family

If we look at diseases that come later on, more difficult Access to jobs, insurance and social organisation

Pre-clinical screening as starting point, must first consider whether test straightaway and influence of that. Often no symptoms.

Poss of testing raises number of people who want test by 50%. If poss during pregnancy, number raises to 98%. Thus, predictive medicine provides reassurance, rather than distress

For someone with Duchenne syndrome, can avoid no of tragedies

Importance of genetic counselling before test, but not enough – need info for everybody – education programmes. Avoid stigmatisation of people

Not much use for employment purposes

Insurance implications clear

Key issue is data protection

Most sensitive of all data, because of predictive power and shared in specific group of individuals

Goes beyond individualistic approach

Can be used exclusively for identification purposes

INTERNET AVAILABLE GENETIC TESTS

Who owns genetic info?

Council of Europ recommendation 97.5 -

Stefano Rodota

Legit of tests only for health or research Therapeutic model Conference Review: Justice, healthcare and the Trend Towards Predictive Medicine For British Medical Journal

Thus week, Brussels held a symposium on the future of health care, which aimed to bring young and senior scholars to question the ends of current trends in medicine. In particular, the symposium focused on ‘predictive medicine’ and the emerging opportunities for working towards a more just healthcare system. The symposium was supported through the Brocher Foundation, a research foundation interested in questions concerning the socio-political context of science and medicine. It was a relatively small meeting, though the kinds of guests reflected key authors and speakers in bioethics.

The symposium began with a lecture from Norman Daniels, whose work on XXX

Norman Daniels drew attention to the inadequacies of the US model and the worry of exporting its medical models to other countries. His Rawlsian approach to healthcare justice reflected the social obligation to provide socially just …. He also spoke about the challenges faced by the emergence of predictive medicine as a moment of opportunity for requestioning how medicine takes place. Acknowledging that predictive medicine will raise challenging economic realities for the medical industries, Daniels argued that this can be seen as a chance to provide greater justice in healthcare, or it can be used to exacerbate the needs and lack of the most vulnerable people.

Rawlsian ideas were taken up in the subsequent presentation byXX. However, the focus was significantly different, raising questions about the body-as-product both commercially and ideologically. XXX addressed the challenge of Utopian medicine, the prospect of which seems wholly inadequate even in best-case scenarios. The acceptance of tragedy in life is considered indicative of the human condition and the rejection of this circumstance can be seen as socially divisive. It is not that people should not seek to optimise their health, but that the process towards realising that will be to the detriment of those who have the most need.

Neither of the speakers fully addressed the difficulty with limiting individual desires to pursue health at all costs. Indeed, there was lmite

Engaging with synthetic biology (2009 18 Jun, London)

Engaging with synthetic biology 18th June 2009, 9.45am – 12.15pm The Royal Academy of Engineering London

Chair:                           Professor Robert Winston HonFREng FMedSci, Imperial College, London

Speakers:         Professor Richard Kitney OBE FREng, Imperial College London Dr Jane Calvert, University of Edinburgh Dr Suzanne King, People Science & Policy

Panellists:          Professor Robin Gill, University of Kent Professor Paul Freemont, Imperial College London Fiona Fox, Science Media Centre

If you would like to attend, please complete and return the booking form which is available from: http://www.raeng.org.uk/events

Please do forward this invitation to colleagues, who may also be interested in attending

Nanotechnology and Postmodern Culture (2009, Jun 9)

Giving talk at Sheffield Uni on 9 June - Nanotechnology and Postmodern CultureWhat kind of future is nanotechnology creating for us? What will it mean to be human in the twenty-first century?Professor Richard Jones (Physics and Astronomy), Dr Alex Houen (English), and Professor Andy Miah (Media, Language and Music, University of the West of Scotland)

http://www.sheffield.ac.uk/english/arts-science/events.html#June+2009

The Perfect Body (2009, Oct 9-13, Sweden)

- Call for Applications -Closing Date for Applications: 1 July 2009 ESF-LiU Conference The Perfect Body: between Normativity and Consumerism Scandic Linköping Väst, Linköping, Sweden 9-13 October 2009 www.esf.org/conferences/09273

Chaired by: Katrin Grüber - IMEW, DE & Ursula Naue - LSG, AT

ESF Contact: Anne Blondeel-Oman - ablondeel@esf.org

Enhancement as the improvement of desired characteristics (W. French Anderson) means to focus on abilities, capacities and quality of life. These categories can be viewed and defined from different value-driven perspectives which are based upon certain viewpoints on what constitutes “normality”. Furthermore they are framed by the concept of autonomy. The general approach towards the issue of enhancement can be understood in the context of consumerism – the “production” of enhanced persons as an act of individual freedom and choice. But another approach, which will be the main focus of the conference, is based upon the fact that perspectives of disabled persons on enhancement have been neglected so far. This is important as enhancement technologies can have different societal and political implications for disabled and non-disabled persons. The discussion about enhancement focuses on therapy of something in need of treatment. But with regard to disability, this debate about enhancement in contrast to therapy and treatment has to be re-thought and re-contextualised.

Hence, the conference takes as its starting point the view that it is socio-politically as well as ethically necessary and important to look at enhancement technologies from a “disability-perspective”. In the context of historic developments and the intersection of medicine and economy, enhancement technologies will be discussed from several different scientific perspectives. The conference is organised as an interdisciplinary dialogue and aims to provide an open forum for discussion and networking. This approach towards enhancement technologies is necessary, as the field of enhancement is an increasingly important area of intervention into life and the body. The conference will be the first international meeting to bring together Disability Studies, Science, Technology and Society Studies and Ethics. The following are some of the questions that will be discussed:  § To what extent and in what way does consumerism influence the current debate about enhancement technologies? § Which problems arise from this understanding of enhancement technologies for disabled and non-disabled persons and consumers of these technologies? § What are the consequences of enhancement technologies for disabled persons? § Is the “upgrade” an upgrade from old established norms or is a “new normal body” created? § Who is excluded by both starting points of enhancing the human being? § Do enhancement technologies carry a risk of excluding certain groups within society, such as disabled persons? § How can consumerism be embedded in an ethical framework? § What role does normativity play? § What new possible forms of exclusion and inequality on several levels might occur as a result of using enhancement technologies?

Questions such as these make it quite clear that the conference is a necessary and important way of approaching enhancement technologies that already have implications for both human beings and for society.

Invited Speakers will include:

·         Michael BURY - RHUL London., UK Another look at the body ·         Inez DE BEAUFORT - Erasmus MC, NL tbc ·         Barbara DUDEN - Hannover U., DE Never good enough? The "body" between normativity and consumerism ·         Marcus DÜWELL - Utrecht U., NL Liberal Societies and the Moral Evaluation of Human Capacities: Ethical presuppositions in the Enhancement-debate ·         Jennifer FISHMAN - McGill U. Montreal, CA ·         Joakim ISAKSSON - Umeå U., SE ·         Rosemarie GARLAND-THOMSON - Emory U., US ·         Katrin GRÜBER - IMEW, DE Cochlea implant as a case study for promises and expectations ·         Robin MACKENZIE - Kent U., UK ·         Judit SANDOR - CEU Budapest, HU ·         Silke SCHICKTANZ - UMG Göttingen, DE Morality and Perspectivism in the Therapy-Enhancement-Distinction ·         Frida SIMONSTEIN - Yezreel Valley College, IL Reprogenetics, enhancing and the invisible vessel ·         Jackie Leach SCULLY - Newcastle U., UK This is how I am: Bodies, difference, and identity ·         Bertrand TONDU - Toulouse U., FR Cyborgs and Humanoid Robots: Myth and Reality ·         Simo VEHMAS - Jyväskylä U., SF Dimensions of disability ·         Paul VERSCHURE - U. Pompeu Fabra, ES How to Build a Cyborg ·         Anne WALDSCHMIDT - Cologne U., DE Body, power, difference - reflections about normativity, normality and disability ·         Gregor WOLBRING - Calgary U., CA Ableism, Transhumanism and the transhumanization of Ableism: The Future has started today?

Full conference programme and application form accessible online from www.esf.org/conferences/09273

Some grants are available for young researchers to cover the conference fee and possibly part of the travel costs. Grant requests should be made by ticking appropriate field(s) in the paragraph "Grant application" of the application form.

Kind regards, Corinne Wininger Communications Officer - ESF Conferences

European Science Foundation - Communications Unit 1 quai Lezay-Marnésia, BP 90015 67080 Strasbourg Cedex, France Phone: +33 (0)388 76 21 50 Fax: +33 (0)388 76 71 80 clemoal@esf.org www.esf.org/conferences

------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------ This conference is organised by the European Science Foundation (ESF), in partnership with Linköping University (LiU).

With support from

Human Enhancement in Brussels (2009, Feb 24)

February 24, 2009Brussels, Belgium

IEET fellow Andy Miah will be speaking at the one day workshop for the European Parliament in Brussels, on Tuesday 24 February 2009

Sponsored by the Rathenau Institute

Human enhancement is the trend to improve the body & mind of human beings by technological means. Examples are the use of “smart pills” to improve concentration or cosmetic surgery. Other examples are selecting embryos that are genetically disease-free to use in an IVF procedure, mood brightening drugs or devices.

These and other technologies promise benefits for the individual using them, but what are the long-term effects? Will human enhancement enlarge social and economic differences? And will the health care remain affordable? Should research into such technologies be stimulated or not? We believe that there are three strategies that the EU could take in response to the challenges human enhancement will pose to the EU. We think that human enhancement raises serious challenges to the EU, and we have identified three strategies that the EU could take to respond to these.

These strategies will be presented by and discussed with experts during the workshop. Some more information on human enhancement, the challenges it poses, the three strategies, and the workshop can be found in the attached information folder.

The workshop is a part of our project on human enhancement. The goal of the project is to provide policy options on human enhancement to the European Parliament. This project is commissioned by the European Parliament and is carried out by ITAS and the Rathenau Institute. We will incorporate the debate during the workshop in the final report.

The workshop will be held on 24 February 2009 in the European Parliament (Rue Wiertz 60, 1047 Brussels). The first part of the workshop will be from 12.45 to 14.15 in room ASP 5F385 and will explore which of the three strategies will be most suitable for the EU. During this part of the workshop, a sandwich lunch will be provided.

The second part of the workshop will be held in room ASP 5G2 from 14.45 to 16.30. In this part, the strategies will be put to the test and will be thoroughly debated – hopefully by you as well!

If you want to attend the workshop, you need to register by sending an e-mail with subject “workshop human enhancement” to info @ rathenau.nl before 16 February 2009. This e-mail should include your name, nationality and date of birth. This information is necessary to ensure your access to the European Parliament and will be treated confidentially.

Please do not hesitate to contact us in case you have any questions about the workshop or our project.

Yours sincerely,

Martijntje Smits and Mirjam Schuijff Rathenau Institute

E-mail: m.smits @ rathenau.nl or m.schuijff @ rathenau.nl Telephone: + 31 70 342 15 42

Yours faithfully,

Mirjam Schuijff, Researcher Technology Assessment Rathenau Institute

Phone: (0031) 70 34 21 524

Address: Anna van Saksenlaan 51 2593 HW The Hague

Postal address: Postbus 95366 2509 CJ THE HAGUE (NL)

The Rathenau Institute focuses on the influence of science and technology on our daily lives and maps its dynamics; through independent research and debate.

New PhD studentships

Deadline for applications is 12 January, 2009: http://www.uws.ac.uk/research/MediaStudentships.asp

Finally, here are the project outlines:

Blogging the Vancouver 2010 Olympics (Ref.PHDMLM003) Director of Studies: Dr Andy Miah Research into the new media dimensions of an Olympic Games has become a focal point for researchers in recent years. Sports governing bodies have also responded to the rise of new media, as a distinct reporting form within the organizational framework of a mega-event. For instance, for the 2008 Beijing Olympics, the television rights contracts were separated from internet broadcast rights for the first time in history. Also, in February 2008, the International Olympic Committee provided extensive blogging guidelines for the first time, which affect all accredited persons at the Games, including athletes. Additionally, a remarkable number of citizen journalists is visible at recent Games and their capacity and entitlement to report on the proceedings is a much more contested set of circumstances. As traditional media outlets rush to converge and consolidate their online presence, questions arise as to the contribution of dominant social networking platforms to the construction of the Games-time narrative. Evidence suggests that organizations are making strategic decisions to affect these conditions. For instance, in March 2007, the BBC purchased a You Tube Channel. Alternatively, in August 2008, the IOC signed agreements to broadcast parts of the Olympic Games on You Tube to countries where no television broadcast license was in place. This PhD studentship will focus on the Olympic Winter Games of Vancouver 2010 to study how a range of new media is infiltrating the Olympic infrastructure. It will seek to contextualize the new media culture of Vancouver 2010 within a series of cultural and political issues that have surrounded the lead-up to its Winter Olympics.

Candidates should have a higher degree and particular expertise in qualitative research methods and social media.

Prospects of immortality: public engagement with Biogerontology and life/health span expansion (Ref.PHDMLM004)

Due to its broad application to a number of other sciences, biogerontology is one of the most relevant fields of inquiry today. It speaks to the convergence of the NBIC sciences and to the redefinition of health care that arises by describing ageing as a disease to be cured, rather than a natural process to accept. Biogerontology engages us with the prospect of extending health or life span to an unknown degree and, as such, it is a controversial discipline. Over the last ten years, work in this area has shifted from scientific impossibility to becoming a core part of scientific endeavour. A range of media coverage, from aspersion to fascination, has accompanied this shift. In the literature on public understanding of science, there is no research yet attending to this distinct, but profound area of scientific inquiry. As such, this PhD studentship aims to explore the following questions:

* How has biogerontology been articulated though the media? * What issues surround the political economy of research into life-extension? * How do different research communities orientate themselves around the various media narratives on life-extension? * How do journalists report research on biogerontology? * What can be learned from this subject area to broadly inform work into science communication?

Candidates should have a higher degree in science communication and qualitative research methods in media sociology.

Director of Studies Andy Miah External Adviser: Aubrey de Grey

The ethics of human enhancement in film (Ref.PHDMLM005)

Studies in the ethics of human enhancement have advanced considerably in the last five years through the emergence of new communities of scholarly inquiry. A number of scientific disciplines have been brought under the spotlight due to their likely use for lifestyle, non-therapeutic purposes. The connections between filmic narratives and bioethics are made manifest in recent cultural studies and can be linked to broader, literary origins. Yet, there is very little research that investigates the range of narratives that emerge on the ethics of human enhancement within film. This absence affects the degree of complexity that is brought to how such debates are played out in the media and in policy. This PhD explores the contribution of film to such imaginations and aims to add complexity to our understanding of how film conveys such alterations. It should also help us understand how film functions as a posthuman device of expressing humanly experiences, such as process of remembering, perceiving and the possible disruption of sensory encounters. It also aims to explore the limitations of cultural reference points within scientific policy making on the ethics of human enhancements, exploring the range of metaphors, analogies and stories that contribute to shaping the public understanding of science.

Candidates should have a higher degree and particular expertise in film theory and technological fiction.

Director of Studies: Andy Miah

The BioCentre Debate on Arts and Technology (2008.10.14, London

My Presentation: [slideshare id=666917&doc=miah3008biocentre-1224321969659504-8&w=425]

On 14th October, I'll give a talk at the Southbank in London and want to play a couple of clips. I hope the Internet works. This first clip is from The Big Donor Show, a reality tv programme from the Netherlands, which purported to have 3 contestants all in need of a new kidney. The winner of the show would receive the life saving transplant. The programme attracted widespread media coverage in advance of its broadcast and in the final few minutes of announcing the winner, revealed the truth:

[youtube=http://uk.youtube.com/watch?v=-lnoVaYj1XI&feature=related]

Trying out Slideshare

[slideshare id=372085&doc=miah200612hastings2-1209129492787872-8&w=425]

Synthetic Times (Exhibition, Beijing, Jun 10 -July 3, 2008)

A BEIJING OLYMPICS CULTURAL PROJECT

namoc2.jpg

National Art Museum of China (NAMOC) No. 1 Wusi Street Dongcheng District Beijing 100010 P.R.ChinaJun 10, 2008 -July 3, 2008

During the 2008 Beijing Olympic Games, the National Art Museum of China will present “SYNTHETIC TIMES – Media Art China 2008” in its current location at the center of Beijing. NAMOC is the only national art museum in China that is dedicated to research, presentation and promotion of modern and contemporary arts. “SYNTHETIC TIMES – Media Art China 2008”, scheduled from June 10th to July 3rd, will be one of the most important cultural events leading up to the Olympic Games in Beijing.

The exhibition will occupy approximately 4500 square meters (48000 square feet) of the museum gallery space and an additional outdoor area of ca. 2000 square meters (22000 square feet). The internationally recognized Dutch architecture firm NOX/Lars Spuybroek will architecturally transform the entire first floor of the museum in response to the nature of the works on display. A full-color catalogue will be co-published by NAMOC and the MIT Press to accompany the opening (with international distribution). An online forum dedicated to the discourse of the respective exhibition themes and beyond will be created prior to the opening of the event. A pre-Exhibition symposium will be held in New York City in collaboration with MoMA (Museum of Modern Art) and other major cultural and educational institutions. The forum and the subsequent symposia will be moderated by a group of distinguished scholars and media arts professionals. Selected discussion essays will be included in the catalogue. Meanwhile, a number of satellite exhibition venues have been planed within the greater Beijing art community, engaging prominent galleries of the booming Beijing art scene. In addition, a number of special evening events during the opening days of the Exhibition are conceived to celebrate countries with significant contribution to the development of media art and culture.

Synthetic Times – Media Art China 2008 will showcase both established and emerging artists from approximately thirty countries, and over fifty media art installation works will be on view along with performances, workshops, presentations and discussion panels. To complement the theme exhibitions, The Museum of Modern Art (MoMA) will contribute a special screening program consisting of seminal video art works. Ars Electronica is set to present the award winning Animation Festival while European Media Art Festival will bring in an edition of International Emerging Video Art. The Exhibition is envisaged as a landmark event in the history of contemporary Chinese art dedicated to embracing the most innovative artistic production and theorization to date, and aspiring to foster and advance new modes of thinking and novel ways of artistic engagement in an increasingly technologically immersed society and global cultural landscape, resonating with the leitmotifs of “Cultural Olympics” and “Hi-Tech Olympics” put forward by the 2008 Beijing Olympic Games.

Supported by the Chinese government, international cultural foundations as well as embassies from the participating countries, renowned museums and media art institutions worldwide will collaborate with NAMOC to produce the Exhibition and its related events.

Philosophy and Human Enhancement (Brussels, 8-10 May, 2008)

I'll be speaking here on the 10th May: Programme provisoire Preliminary program Enhancement – aspects éthiques et philosophiques de la médecine d’amélioration

Jeudi 8 mai

19h30            Accueil des participants 19h45            Conférence inaugurale Cocktail dînatoire

Vendredi 9 mai

Session I : Enhancement et Science-Fiction 9h00-9h50        Jérôme Goffette                Modifier les humains : anthropotechnie (Maître de Conférence, Université Lyon I)    versus médecine 9h50-10h40    Sylvie Allouche                Aspects éthiques et philosophiques de (Lectrice, Collège Eötvös de Budapest)      la médecine d'amélioration dans la science-fiction 10h40-11h        Pause Café

11h00-11h40         Gérard Klein                La Science-Fiction, une littérature                (Edition Robert Laffont)            prothétique

Session II Enhancement and other topics 11h40-12h30    Gilbert    Hottois                        ? (Professeur, Université libre de Bruxelles)

12h30-14h00        Lunch

14h00-14h50        Marie-Geneviève Pinsart                    ? (Chargé de cours, Université libre de Bruxelles) 14h50-15h40        Bernard Baertschi            Devenir un être humain accompli. Idéal (Maître d’enseignement et de recherche,       ou cauchemar ? Université de Genève)

15h40-16h00        Pause Café

16h00-16h40        Kermisch Céline                 Enhancement et perception des risques (Aspirant FNRS, Université libre de Bruxelles) 16h40-17h30        Pascal Nouvel                Un aiguillon philosophique à la conquête (Professeur, Université Montpellier III)     des records : les amphétamines 17h30-18h20        Jean-Yves Goffi                Soigner, augmenter : une frontière floue ? (Professeur, Université Pierre Mendès)

Samedi 10 mai

Session III : Enhancement and sport. Chair : Pierre Daled.

10h-10h50        Alexandre Mauron            Homo faber sui: quelques questions (Professeur à l’Université de Genève)           d'éthique démiurgique 10h50-11h40        Patrick Laure                Ethique des conduites dopantes (Université Paris XI-Orsay) 11h40-12h30        Quéval Isabelle                Le corps rationnel du sport de haut (Maître de Conférence,             niveau: ambivalences du  dépassement de     Université René Descartes-Paris V)    soi

12h30-14h00        Lunch

14h00-14h50         Claudio Tamburrini             What´s wrong with genetic inequality? (Chercheur, Université de Göteborg) 14h50-15h40        Andy Miah                 Human enhancement in performative (Reader, University of the West of Scotland)                    cultures

Human Dignity and Bioethics

I just received my copy of the new publication from the US President's Council on Bioethics. This volume looks like a great addition to the literature. Human dignity featured heavily in my Genetically Modified Athletes and is a concept I am continually drawn back to when thinking about the range of issues arising from discussions about human enhancement.

Ghost in the Shell (1995)

[youtube:http://www.youtube.com/watch?v=7urZe6r5CGU 600 400] References

Ford, P. (2008) Hacking the Mind: Existential Enhancement in the Ghost in the Shell” In Shapshay, S. (Ed) Bioethics Through Film, Johns Hopkins University Press.

Multiplicity (1996)

[youtube:http://www.youtube.com/watch?v=IRqMLNrZtg4 600 400] References

Cox White, B. & Jollimore, T. (2008) Multiplicity: A Study of Cloning and Personal Identity” In Shapshay, S. (Ed) Bioethics Through Film, Johns Hopkins University Press.

I, Robot (2004)

[youtube:http://www.youtube.com/watch?v=nLlHerOMXSI 600 400] References

Coleman, S. & Hanley, R. (2008) Homo Sapiens, Robots and Persons in I Robot and Bicentennial Man” In Shapshay, S. (Ed) Bioethics Through Film, Johns Hopkins University Press.

The Cider House Rules (1999)

[youtube:http://www.youtube.com/watch?v=WxJr09u10co 600 400] References

Arp, R. (2008) “‘I Give Them What they Want—Either an Orphan or an Abortion’: The Cider House Rules and the Abortion Issue” In Shapshay, S. (Ed) Bioethics Through Film, Johns Hopkins University Press.