The Digital Phenotype: a Philosophical and Ethical Exploration

Abstract

The concept of the digital phenotype has been used to refer to digital data prognostic or diagnostic of disease conditions. Medical conditions may be inferred from the time pattern in an insomniac’s tweets, the Facebook posts of a depressed individual, or the web searches of a hypochondriac. This paper conceptualizes digital data as an extended phenotype of humans, that is as digital information produced by humans and affecting human behavior and culture. It argues that there are ethical obligations to persons affected by generalizable knowledge of a digital phenotype, not only those who are personally identifiable or involved in data generation. This claim is illustrated by considering the health-related digital phenotypes of precision medicine and digital epidemiology.

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The digital phenotype: a philosophical and ethical exploration

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

          
     
    
    !          
           

    "        
     
  #        

Introduction
     
                
       
$%&'()*+
     
      $%  &'()*  
             $,  &'(-*  !  
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
#(
                        
                  
              .    
                  
          
/
               
                

 

              
     #          
 
&0
  #      $      
*"

  
1
!(!"

1 !234
.&'(-5$#4*62#
.#
78


/+
2bots$*

$&'(9*#:,+;1:
0"
;7.,:77
<!;Information, Communication & Society())
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.+ !  
           #
                  
       !
    
    
   ! & !
                    
1
                        #
!
#>!?!
                  #
     

 +         1 
                 digital
phenotype                   
#
1. What is the digital phenotype?
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Figure 1. Analogies between the extended phenotypes of spiders and humans. Built with Apple
Keynote 8.0.1, except for web image, by Denis Frezzato, from The Noun Project, CC BY 3.0,
https://commons.wikimedia.org/w/index.php?curid=24126123
Organisms evolve together with the environments they shape or create. E.g.
beehives, beaver dams.
Digital data is analogous to beaver dams or beehives in humans: these are all
collectively created extended phenotypes involved in evolutionary feedback loops
(Richard Dawkins).
Human evolution is also cultural. Data affects the beliefs, norms and behavior in the
human population, thus affecting the cultural dimension of human evolution, most
directly (effects on other levels of evolution cannot be excluded in principle).
The metaphor of data as “digital footprint” is misleading. Rather data for humans is
like the beehive for bees, not a passive trace left somewhere, but something that
groups create collectively and in a way that influences the further behavior of its
producers
2. The ethics of the digital phenotype
2.1 The limits of the personal data protection approach

The data protection approach protects the interests of those who are identifiable in
the digital phenotype.
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This fails to consider the interests of those who are not identifiable, that is, all other
people who may also be affected when a new digital phenotype is created.
Every time generalizable knowledge is produced by studying a digital phenotype,
there are people who are affected outside those identifiable in the data. E.g. we
discover that smoking causes cancer. This affects all smokers (e.g. higher insurance
prices for all smokers).
N.B. The fact that generalized knowledge harm some people all things considered
may be a reason against producing it; but it may also not be, and in many cases, it is
not, an overriding reason and a reason all things considered for not producing such
knowledge. The benefit for all may outweigh the harm of the few.
N.B.2. The problem of generalized knowledge has been recognized in the past for
genetic data. Many have claimed that genetic data is special because it is shared
among relatives. That is a red herring. If knowledge produced with data from person
A allows inferences about person B, then knowledge production about A creates
potential risks (e.g. privacy and discrimination risks) for person B. That is obviously
the case when you produce genetic knowledge about A and B is A’s twin. But it is
also true in the smoking causes cancer case, even if there are less inferences from A
to B to be made.
2.2 The limits of the libertarian approach
The libertarian approach cares about the interests of the people involved in the
production of the digital phenotype, irrespective of whether or not they are
identifiable. This view has several problems:
oPeople can be involved in data production in two different ways: as persons
causing the data collection process to exist and as persons causing the
particular data to exist. E.g. as a shop owner I tape all my clients (person
causing the data collection process to exist); as a client I am taped by the
shop owner (I am the cause of some of the data collected). The interests of
parties involved in data production may conflict. The libertarian approach
does not provide principles to solve those conflicts (except that people are
free to make individual contracts without use of coercion – violence).
oSome digital phenotypes (e.g. Google searches from the beginning of its
existence) are due to the contribution of millions of persons. Shared
ownership to such phenotypes among the co-creators (e.g. all persons typing
a search string on Google) dilutes the practical value of ownership in terms of
control, for each.
3 Governing the health-relevant digital phenotype
In relation to health we can distinguish three levels of analysis: medical data, data
concerning health (in the GDPR sense) and health-relevant digital phenotypes. The
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health-relevant digital phenotype is the broadest of the three concepts,
encompassing the other two. Tweets about vaccination constitute a health-relevant
digital phenotype (it can be studied for public health purposes) but are not medical
data or data concerning health in the GDPR sense
Case study 1. P4 medicine
Personalized medicine using big data generates a digital phenotype that illustrates
the ethical issues for people who are neither identifiable nor involved in data
production.
The big issue for governance is to protect groups that may suffer harm from
discrimination produced by algorithms that are learned from the data.
It may be exceedingly difficult to identify some of these groups.
It may be difficult to use existing governance models for genomic research which
focus on the protection of a specific population, e.g. endangered ethnic minority,
vulnerable to stereotyping, etc…
Case study 2. Digital epidemiology and the use of internet data in public
health
Another example is the digital phenotype from large platforms such as Google. Here the
issue is that these platforms produce data that may potentially benefit populations, e.g. if
they are used for public health.
But the data collection process and algorithms are not optimized for epidemiology.
Such platforms should at least become more transparent about their data and
algorithms, allowing broadened access to their data and algorithms, in order to enable
researchers (not working for or in direct partnership with Google) to criticize and improve
them.
Conclusions


              
!
"
0
                
        "      
@0
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"

"
/?#
 /29
             
      3  
                    #
<

"A
                
 /      
"

Reference list:
/5B.737.
B@8C@2
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5#7BH(JL(Cultural Transmission
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5M/(JJ)Self-Ownership, Freedom, and Equality
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