23andMe
A new two-sided data-banking market model
October 12th
Henri-Corto Stoeklé
PhD Candidate
Medical Ethics Laboratory (EA4569)
Paris Descartes University
CARPEM / AP-HP
1
DTC genetic-testing service
1) Online contract and order
2) Provision of a saliva sample
Adapted from Stoeklé et al BMC Medical Ethics 2016.
3) Shipping of the saliva sample
4) DNA extraction and DNA
analysis on an Illumina Human
Omni Express-24 chip
5) Genetic information
Available online via a
personalized 23andMe web
account.
2
DTC genetic-testing service & Research?
1) Online contract AND consent
Commercial contract (electronic)
Research informed consent (electronic)
« DTC genetic-testing service »
« 23andMe Research »
Adapted from Stoeklé et al BMC Medical Ethics 2016.
3
contract
AND
consent
contract
AND
consent
contract
AND
consent
+
+
+
Biobanking
Data Banking
• Genetic Information
• Self-Reported Information
1 000 000 Individuals
+
• Saliva sample
• Web Behavior Information
Adapted from Stoeklé et al BMC Medical Ethics 2016.
4
What about Industry?
$60 million for the whole-genome sequencing data of 3000 23andme
customers with Parkinson’s disease, with the aim of generating new
therapeutic target leads
Adapted from Stoeklé et al BMC Medical Ethics 2016.
5
A two-sided markets model
Market one :
« Business to Consumer »
23andme / People-Patient
Consumer
People
Patient
Data
&
Biological sample
Information
Market two:
« Business to Business »
23andme / Industry-Research
Data
Two-sided platform
23andMe
Data Banking
Biobanking
Funds
Business
Industry
Research
Data Banking
In 10 years,
23andMe has created a valuable Biobank and a Data Bank from 1 000 000 individuals
with a legal and electronic informed consent.
Adapted from Stoeklé et al BMC Medical Ethics 2016.
6
Not the only one…
7
Model: data medicine system
Researchers
Samples
Information
Patients
Information
Data
Samples
Data
Information
Academic medical center
Biobank
Bioinformatic
Platform
Genomic
Platform
Database
Clinicians
Samples
Data
Samples
Data
Information
Industry
Adapted from Stoeklé et al Science and Engineering Ethics (in review).
8
Scenario: data medicine system + two sided markets
@
Two-Sided
Markets
Researchers
Data
Samples
Information
Informed consent
Commercial contracts
Samples
Information
Patients
@
Information
Data
Samples
Data
Information
Academic medical center
Biobank
Bioinformatic
Platform
Genomic
Platform
Database
Clinicians
Samples
Data
@
Samples
Data
Information
@
Two-Sided
Markets
Adapted from Stoeklé et al Science and Engineering Ethics (in review).
Industry
@
9
Hypotheses (1)
According to our model and scenario, the ethical issues could be:
1)
To find a way to promote a greater transparency and education with patient in
French academic medical center for a better trust and involvement in our
system.
2)
To find a way to centralize and value these samples and data in French
academic medical center in priority, and not in foreign private companies, for
a collective and national benefit first from ourself.
Important points in a country such as France, in which social insurance
system is based on solidarity, rather than individual ability to pay.
Adapted from Stoeklé et al Médecine / Sciences (in press).
10
Hypotheses (2)
@
Two-Sided
Markets
Researchers
@
Electronic and dynamic informed consent
Samples
Information
Patients
@
Information
@
Data
Samples
Data
Information
Academic medical center
Biobank
Bioinformatic
Platform
Genomic
Platform
Database
Clinicians
Samples
Data
Samples
Data
@
Information
@
Two-Sided
Markets
Adapted from Stoeklé et al Médecine / Sciences (in press).
Industry
@
11
Thank you
Christian Hervé, M.D, PhD (LEM director, CARPEM, Paris)
Guillaume Vogt, PhD (NHG director, CNG-CEA, Evry)
Marie-France Mamzer-Bruneel, M.D, PhD (LEM, Necker, CARPEM, Paris)
Pierre Laurent-Puig, M.D, PhD (CARPEM director, HEGP, Paris)
12