PAVING THE WAY FOR RESEARCH BIOBANKING IN

INDONESIA

ENDANG SR HARDJOLUKITO DEPT ANATOMICAL PATHOLOGY

FACULTY OF MEDICINE

UNIVERSITY OF INDONESIA

2 TYPES OF BIOBANK IN INDONESIA

• THERAPEUTIC BIOBANK : 4 EXISTING BIOBANKS – COLLECTING. PROCESSING AND PROVIDE MATERIAL FOR

THERAPEUTIC PURPOSES : • BONE RECYCLING • EYE BALL PROTHESE • AMNION SAC PROCESSING • STEM CELL

• RESEARCH BIOBANK : – COLLECTING, PROCESSING AND PROVIDE MATERIAL FOR

RESEARCH PURPOSES : • EPIDEMIOLOGY STUDIES • ETIO/PATHOGENESIS STUDIES • DIAGNOSTIC STUDIES • PROGNOSTIC AND THERAPEUTIC STUDIES.

New Therapeutic biobank

• OWNED BY HOSPITAL (CMH)

• UNDER THE MEDICAL TECHNOLOGY DEVELOPMENT DIVISION

– STEM CELL TECHNOLOGY DEVELOPMENT

– BIOBANK FOR TISSUE, UMBILICAL CORD BLOOD

TOP-DOWN APPROACH

• AIM : RAISE AWARENESS

– AT THE DECISION /POLICY MAKER LEVEL : TO GET NATIONWIDE SUPPORTING GOVT POLICY.

• PRESENTATION AND DISCUSSION WITH KEY PERSONS IN THE Ministry of Research and Technology

– AT NATIONWIDE RESEARCH COMMUNITY : TO ENCOURAGE THEIR INVOLVEMENT AND SUPPORT

• Presentation and discussion at the ICEEBM meeting (Indonesia Center for Epidemiology and Evidence Based Medicine)

ICEEBM

COUPLING THE DATA AND RELATED TISSUE

DEMOGRAPHIC DATA COLLECTION

NATIONAL CANCER REGISTRY

PROGRAM

RELATED TISSUE

COLLECTION

NATIONAL NETWORK OF

CANCER TISSUE BANK

Organisational/Coordination Structure

ICE-EBM

NATIONAL COORDINATOR

UNDIP/ RS Kariadi

UGM/

RS Sardjito

UNHAS/

RS Wahidin S

RS KANKER DHARMAIS

UI/ RSCM

UNAIR/

RS Soetomo

The result

• Excited and Interested

• Great Enthusiasm

BUT ……………………………….

Discouraging by the fund

Bottom up- approach

• Initiated in the institution – Activate the Dept Biobank group

– Courtesy visit to the Dean • Establishing a faculty “Biobank team”

• Facilitate to look for grants from potential sources : – University, Ministry of Education

– Others

• Facilitate the national symposium next year – Biobank promotion among universities

– Workshop to strengthen our biobank (Univ of Indonesia)

– Foreign speaker will be invited (fr ANRRC? )

Bottom-up approach (cont)

• Facilitate the agreement with teaching hospital/s – Cipto Mangunkusumo hospital the main teaching hosp.

– Others networking teaching hosp.

The encouraging point

• University of Indonesia declared as a “Research University” – Core research staff : recruitment w/ special duties

(more in research) and special incentive schemes

• Twin tower : MERC to facilitate research activities – Medical Education and Research Center

• Clusters in research tower are : – Infection-Immunology - Reproduction – Human Cancer - Occupational Health – Human Genetic - Stem Cell & Tissue – Neurosciences Engineering – Clinical Trial - Metabolic and ageing

The encouraging point (cont)

• Increasing intra mural and extra mural competitive research fund

• More Research oriented and research minded now than before

• Sporadic “biobank” – Dept of Urology – Dept of Internal Mdicine – Dept of Orthopedy – Dept of Microbiology

How to start w/ a limited fund ?

• BIOBANK SUPPORTED BY THE SPECIAL LAB. TECHNICALLY

LABORATORY BIOBANK

ACCREDITED PROCESSING

PROFIT TAKING

EDU

RES

DG/ RESEARCH

COMMUNITY.

COLLECTING CATALOGING STORING DISTRIBUTING

N O N P R O F I T

P R O F I T

ANTICIPATING THE COMMON PROBLEM

Henderson et al Genome Medicine 2013 :

FUND …….The sustainability

41 % MAJOR CONCERN

31% MODERATE CONCERN

20% MINOR CONCERN

9% NOT AT ALL

(survey to 456 biobanks)

How to solve the sustainability ?

• Contradictive / Imbalance situation.

BIOBANK QUALITY

NOVELTY

INTERNAL FUND

EXTERNAL FUND

MANPOWER /SKILL

EQUIPMENT

HIGH COST HIGH COST

???

NON PROFIT

Non profit based

• Access fee = Cost recovery : ACCEPTABLE cost recovery only : sustain the development ? • Access fee = Cost recovery ++ : CONTROVERSIAL consider as “Profit “? “profit-based” hidden as “Cost recovery ++“ • What is “profit” definition ? To what extent is “profit”acceptable in biobanking ? • Public funded biobank : should be free access for sample Can the public fund fully cover the cost recovery ? Bernice elger et al. Ethical issue in Governing biobank. Global perspective. Ashgate Publ.2008.

PROPOSED ORGANISATION MODEL TO

MAINTAIN THE SUSTAINABILITY

How to solve the sustainability ? (CONT)

• COMMERCIAL SIDE OF BIOBANK

PROFIT

HPA HC IHC MP OTHERS

BIOBANK RESEARCH COMMUNITY

EDUCATION RESEARCH DIAGNOSTIC

COMMERCIAL REVENUE

How to solve the sustainability ? (CONT)

• BIOBANK AS “PROFIT” ORGANISATION.

BIOBANK &

LABS.

RESEARCH COMMUNITY

RECOVERY COST

PROFIT FOR DEVELOPMENT

COST & SURPLUS

PROFIT FOR RESEARCH

GRANT

“PROFIT” based

Similar to Co-op concept

Henderson et al Genome Medicine 2013

5% of BIOBANK : PROFIT- BASED

THANK YOU

ARIGATO GOZAIMAS

How to solve the sustainability ? (CONT)

• BIOBANK SUPPORTED BY THE SPECIAL LAB. FINANCIALLY AND TECHNICALLY

LABORATORY BIOBANK

ACCREDITED PROCESSING

PROFIT TAKING

EDU

RES

DG/ RESEARCH

COMMUNITY.

COLLECTING CATALOGING STORING DISTRIBUTING

N O N P R O F I T

P R O F I T

• Henderson et al Genome Medicine 2013

While concerns about competition and demand were not substantial, many respondents did express concern about sustainability, typically linked with financial needs. Forty-one percent consider this a major concern, 31% a moderate concern, and 20% a minor concern; only 9% report it is not at all a concern