ict, geni ed epidemiologia collaborativa - biggeri tallacchini

ICT, geni ed epidemiologia collaborativa:

strumenti di empowerment per la salute dei cittadini

Annibale Biggeri Mariachiara Tallacchini

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Milano, 19 ottobre 2016

• Dignità e conoscenza: la partecipazione alla produzione della conoscenza condivisa nelle società della conoscenza

• Oltre il diritto all’informazione come diritto della vita privata (CEDU 1998, Art. 8)

• Geni e ICT

• Citizen Science e Peer-production of knowledge

• L’epidemiologia collaborativa e le Fondazioni Bioteca: Manfredonia, Sarroch, firenze PM2.5 , MammeNoInceneritore

Dignità e produzione di conoscenza


Due visioni integrate di dignità:

- Valori dell’umano - Dignita’ come

riconoscimento individuale





- La conoscenza è diventata rilevante con la

crescente dipendenza delle scelte sociali e di

policy dal sapere scientifico

- Dovere morale e giuridico di conoscere per compiere scelte pubbliche









- I cittadini hanno il diritto di sapere quale conoscenza viene posta a fondamento

dell’azione politica- I nuovi diritti nella

democrazia riguardano la maggiore trasparenza,

controllabilità, accesso alla conoscenza









- I cittadini hanno il diritto di sapere quale conoscenza viene posta a fondamento

dell’azione politica- I nuovi diritti nella

democrazia riguardano la maggiore trasparenza,

controllabilità, accesso alla conoscenza

?Article 18 – Decision

making (Unesco 2005)- Professionalism, honesty,

integrity and transparency…declaration of conflict of interest….and

sharing of knowledge- Opportunities for informed

pluralistic public debate

La mancata informazione come lesione del diritto

all’integrita’ della vita privata e delle decisioni a

essa inerenti

La mancata informazione come lesione del diritto

all’integrita’ della vita privata e delle decisioni a

essa inerenti

CEDU - ARTICOLO 8

Ogni persona ha diritto al rispetto della propria vita privata e familiare, del proprio domicilio

e della propria corrispondenza.

Partecipazione: la costruzione del sapere

condiviso

European Communities, 2002

Participatory genomics: from “me” to “we”

Peer-production of knowledge:conoscenza, eticita’, fiducia

(Benkler 2006; Benkler & Nissenbaum 2011)

- L’esperienza di produzione condivisa di conoscenza, soprattutto mediata dalle ICT, rende possibile la cooperazione tra individui per scopi condivisi non percepibili o non raggiungibili isolatamente

- Tali esperienze hanno anche un riflesso etico di produzione di comportamenti virtuosi

Participatory genomics: peer-production of knowledge

Personal Genome Project (PGP):difference between crowd-sourced knowledge and peer-

production of knowledge

Do-it-Yourself

Citizen Science andscientific citizenship

Scientific work undertaken by members of the general public, often in collaboration with or under the direction of professional scientists and scientific institutions (Oxford English Dictionary 2014)

Riconoscimento del valore teorico e metodologico

Rilevanza politico-istituzionale

Valore economico della citizen science

Citizen Science e agenzie federali US

http://www.google.it/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0CAcQjRxqFQoTCPGTh7bF48gCFUXsFAodDrwBrw&url=http://www.zimbio.com/pictures/DE7Fvvft7oh/Senate%2BHolds%2BHearing%2BFuture%2BHuman%2BSpace%2BFlight/kFOXdTsspF8/John%2BHoldren&psig=AFQjCNFLEAtC5aSn0FssxwIurjekuxu-_g&ust=1446065903821569

Motivating example: the Manfredonia Case

The Seveso directive was the consequence of four industrial accidents in Europe between 1974 and 1976 in UK, The Netherland and Italy. Manfredonia was the last on calendar time. The accident originated in a petrochemical plant and resulted in the release of several tons of compounds containing arsenic.

The toxicity of arsenic and arsenic compounds was already established at the time of the accident. (e.g. NIDSH, 1975)

Arsenic and arsenic compounds were considered by IARC since 1979 (IARC, 1980, 1987, 2004, 2012).

Motivating exampleAt the period of the accident the population of Manfredonia grew up to

about 60,000 inhabitants from less than 20,000 in the years preceding the plant construction. The workforce summed up to around 2,000 workers.

“The response was delayed because full information on the composition of the toxic cloud that escaped from the plant was made available by the company only several days after the accident. The delays, confusion and conflict about protective �and remedial measures cannot be attributed merely to incompetence or inefficiency of the authorities.” (De Marchi �1998, about Seveso lesson)

Interestingly, in Manfredonia scientific uncertainty on the nature of the risk �and all the consequences of exposure was less problematic. But at that time, this did not affect the “total lack of preparation for an emergency on the part of the local community and the authorities, all unaware of the potential risks deriving from the plant’s production activities”.

Around 150 hospital admissions for acute arsenic poisoning were registered. (Prencipe 1979) The cohort of occupationally exposed workers during the remediation activities following the accident resulted in equivocal evidence of risk. (Bertazzi 1982, Comba and Pirastu 2004)

The site remediation was undertaken in the immediate phase (about 800 ha) but was incomplete. Several other episodes of release of toxic substances occurred in the subsequent period (the plant was closed on 1994). In 1998 The European Court of Human Rights acknowledged in Manfredonia a violation of the European Convention (w.s.r. to right to information ).

On 2001 a trial involving the plant ended in not-guilty verdict (the final verdict on “environmental disaster” was issued on 2012). Compensations to the victims and to the Municipality was offered by the company.

The Manfredonia project Epidemiology 40 years later …

The project is truly participatory. It is on-going (started on 2015) and is documented in the journal of the Italian Epidemiological Association.

A different approach: What to do BEFORE any epidemiological activity

QUESTIONS DATA METHODS OUTCOMES Ext.PR

Key points

• Declare NON NEUTRALITY of science

• Set-up the “Citizens’ Committee” : all matters regarding the project are discussed in openevery one is invited and can attend the meetings

• Transparency of all documents and complete financial disclosure

• Re-definine the study protocol deceiving the Mayor• Anticipate all the outcomes scenarios, the implication

of each of them and the actions the Mayor would intend to undertake

• Set-up an extended peer-review of the study protocols

Problems

• Epidemiologists deceived the City Mayor. They left undefined the study protocol to allow public engagement

• The population was suspicious and reluctant to participate in a study forty years after

• Collective memories were voluntary or involuntary concealed• Extended peer review of the study protocols was difficult to

organize• Conflicts with local officers and Local Health Unit professionals

emerged• Advocacy was requested• Engaged citizens tended to follow their own objectives• Study Outcome Scenarios were anticipated but the institutional

committent was missing (the City Mayor was reluctant)

The Romagna Bioteca Foundation Project

Meeting on a Participatory Platform Pilot ProjectFor Total Exposure and Citizens’ health (4PTECH)IRST Meldola December 9, 2013, 11am – 1pm

History and Context• The first Italian Population Cancer Registry dates back to 1976

(Varese), followed on early eighties by shared efforts between Romagna and Florence areas.

• Those Registries allowed the design and conduct of the first milestone in primary prevention research and life style epidemiology – the multicentric case-control study on gastric cancer – which gave the input to the European Prospective Investigation into Cancer and Nutrition (EPIC) through biobank.

• IRST grew up to be recognized as national cancer institute (IRCCS) and provide comprehensive cancer care to the Romagna population.

• Other important experiences on Surveillance of exposed populations by my group are: WHO Environment and Health in Italy 1997-2002; the MISA, EpiAir and ESSIA studies 1999-2012; the PHEWE study 2004-2012; the Sarroch Project (biomonitoring and biobanking since 2006); WHO High Risk Areas in Sicily (environmental epigenomics 2007-2013); the Balkan Syndrome 2011-2013; and last the Taranto Court Case since 2011.

Principles

• Independence and scientific credibility. The WHO report Environment and Health in Italy 2002 and the WHO report on High Risk Areas in Sicily 2009 are two paradigmatic examples. In the last Local Experts played a key role.

• Pro-active role of epidemiologic research. The MISA study on short-term effects of air pollution in Italy and the PHEWE study on climate and health in Europe are examples of epidemiologic results later used for public health actions.

• Advocacy and local/regional/state government commission. Science is not neutral and the relationship with sponsors determines the outputs. EpiAir, ESSIA and Sarroch are three very different projects in this respect.

• Epidemiology, Prevention and Public Health. The Balkan syndrome (in Italy the Quirra court case) and the Taranto court case are examples of insuccess of Epidemiology.

The contents of the project• The omics revolution. In the context of epidemiologic surveillance

this means the emerging EXPOSOMICS conceptualization. Exposome is the characterization of a person’s lifetime exposures. It implies high throughput assessment of biomarkers, by biobanking and definition of large population cohorts and scientific consortia.

• The commons-based peer-production of knowledge and values, the participants-led research. Independence and scientific credibility are side effects of a new reasearch paradigm in which particpants are deeply involved in the knowledge production process.

• The virtual space. While in epidemiologic cases on small exposed populations the community is easily defined on the physical space, approaching modern large scale EXPOSOMICS (e.g. life styles) the community space is defined differently. Participatory tools and ICT platforms become mandatory.

Bioteca• Biomonitoring is the basic epidemiologic design for

EXPOSOMICS analysis.Biomonitoring measures exposure biomarkers on biologic specimens collected on consenting individuals (donors).

• In epidemiologic surveillance biobanking is most promising since a huge improvement on knowledge is expected in forthcoming years (see the epigenomics revolution is the last four years).

• The are two actors (the researcher and the donor) and a third one is needed, the Bioteca.

• Bioteca is a trusted entity and its by-law regulates the permissible use of the stored materials following principles wired in the by-laws.

• ICT platforms are the tools to allow participants to adhere the Bioteca Project, and possibly to become donors and to lead and to control the research process.

some critical appraisal …

• Haphazard samples vs population cohortwhile GWAS may be valid, EWAS required more stringent design criteria

• Biomonitoring with Biobanking vs ExposomeExposome opens Metabolomics and Proteomics and other promising omics technologies to environmental epidemiologythis exercise is mostly blindly explorative

• Participant-driven seems disappeared in more recent papersonly in patient-driven research some control in the design phase is retained

Two different pollution cases: the oil refinery and the PM2.5

Sarroch (Sardinia) Florence

• Industry pollution from an oil refinery plant

• Lack of data on environmental health, lack of established associations between emissions and health effects

• Need to establish sound agreed knowledge; in 2006 a project started welcome by the population

• Municipality on behalf of citizens and researchers

established the Bioteca Foundation (2011)

Sarroch: the refinery

Integrating academic and engaged science: the time-frame mismatch

Monitorare insieme: i cittadini e le autorita’

http://www.mammenoinceneritore.org/

http://www.mammenoinceneritore.org/

Modelli di rapporto tra istituzioni, scienza e societa’

Policy-related science (EU): le istituzioni proteggono i cittadini, principio di precauzione

a Comunita’ scientifica autoreferenziale: “Republic of science” (Polanyi) e ‘Science speaks truth to power’ (Wildafsky)

Necessita’ di reperire tutta la conoscenza rilevante e peer-review esteso (Funtowicz)

Consultazione e partecipazione dei cittadini alle politiche science-based

Pari produzione di conoscenza e collaborazione tra scienziati, cittadini e istituzioni







Da:conoscenza civica

come “rights from wrongs”

in tribunale







A: Istituzioni, cittadini e scienziati collaborano

proattivamente Nella ri-valutazione e ri-

negoziazione della conoscenza in un processo di crescente trasparenza, accessibilita’ e credibilita’

Da:conoscenza civica

come “rights from wrongs”

in tribunale

ict, geni ed epidemiologia collaborativa - biggeri tallacchini

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