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  From: Gur Bligh <gb2171@columbia.edu>
  To  : <CPC@emoglen.law.columbia.edu>
  Date: Sun, 30 Apr 2006 15:05:43 -0400

Paper 2: Data profiling - understanding the costs

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      Data profiling - understanding the costs

      

Throughout the course we extensively discussed the growing trend of data
profiling in retail and "homeland security". It seems that every website we
access today is trying to profile us, personalize our webpage, and offer us
the things we like, whether its music (Pandora), books (Amazon), or movies
(Netflix). For us it seems like a great deal. We give unimportant
information about ourselves and in return we are no longer anonymous in an
urban society, we are back in the little town where "everyone knows your
name" and gives us "the usual". We are told that the price we pay is in
terms of loss of identity and privacy. But what is it exactly to lose one's
identity?  If we have nothing to hide - what do we have to fear?

 

      I believe that one way to explain and relate to this sense of lost
identity is through the lens of genetic profiling. In this context, I am not
referring to the use of genetic data as an identifier but rather to the use
of genetic data to extract information about diseases and predispositions.
As is widely recognized, genetic data influences a wide range of physical
and mental diseases, from Huntington's disease and cancer to mental
disorders and character traits [1]. Various legal frameworks have been
employed to prevent misuse of genetic information including Title VII of the
Civil Rights Act of 1964 and the Americans with Disabilities Act(ADA)[2].
Furthermore, all but three states have passed some sort of laws designed
specifically to protect privacy or prevent genetic discrimination in health
insurance or employment. In addition, in 2000 President Clinton issued an
executive order prohibiting use of genetic information in federal hiring and
promotion decisions [3]. Efforts to pass a general federal law have so far
failed due to objections of employer groups [4]. Despite the lack of a
satisfactory solution in this area, it still receives a surprising amount of
attention from laymen, legislators and the executive branch. 

 

      However, the special protection granted to genetic information as
compared to other medical information is not self evident. Prof. Epstein
from the University of Chicago argues that "genetic information is in
principle no different from any other kind of information that can be asked
about a given person, including the other medical exams of Eddy Curry. Does
it really make sense to prohibit the use of genetic information that might
explain why a person has shortness of breath and then allow the employer to
look at medical records that reveal that condition" [5]. Indeed, although
employees are usually willing to allow employers or insurance companies
access their medical records, they are generally much more reluctant to
divulge genetic information. So, if it is not the sensitive nature of
medical information in itself, what is so unique about genetic information
that so many people consider it worthy of special treatment? It seems that
the most important answers that have been suggested are also highly relevant
to the context of data profiling in the wider commercial and law enforcement
context. 

 

      Firstly, it has been emphasized that the risk of error is in the
genetic context is significant. Correctly interpreting genetic tests is not
a simple matter, especially since in many cases the data reveals only a
tendency rather than a determinant medical conclusion. This problem is
intensified because of the cultural tendency to overestimate genetic
information and treat it as an authoritative key to understanding humans
("the human instruction book", the "book of life") [6]. Similarly, as data
profiling is also based upon statistical models, the risk of error is very
real. The arrest of an innocent person that by sheer chance matches a
terrorist profile is a possibility which cannot be ignored when we move from
individual assessment to statistical models. As in the genetic context, this
risk is intensified due to the presumed "reliability" of computer-generated
conclusions ("sorry sir, the computer said that you are a terrorist so you
must be one")

      Second, genetic information is permanent and irreversible. It reveals
basic features of the individual which can be revealed soon after conception
and will not be altered for the rest of the individual's life [7]. The
digital profile which is created for each person reflects similar features.
Our private tastes, shopping habits and secret wishes, create a profile that
will be very difficult to alter. The more information is gathered on each
person, the less likely it is that she will be able to reinvent herself and
to just leave "the small town" that is virtually created around her.

      Third, since several genetic features are represented
disproportionately among certain racial groups, it has been suggested that
they may serve as a basis for discrimination or stigmatization of these
groups [8]. This of course is a common problem with data gathering and
privacy invasion. A person is more than his data profile. As opposed to the
"small town" context in which our neighbors know us for what we are, our
database profile is just a collection of details on us. When it is misused,
obviously our most embarrassing and "abnormal" features will be revealed and
will define us, rather than our entire character features.

      Finally, and perhaps most importantly, it has been suggested that
misuse of genetic information robs individuals of their autonomy, "it
subjects persons to judgments based on biochemical attributes unmediated by
individual choice or effort". It has a "reductive" nature, suggesting "that
our genetic material determines our future in some fixed, unalterable way"
[9]. Indeed, this seems to be the essence of the argument against data
profiling and predictive data models in general. It takes away your sense of
identity and reduces you to a sum of data bits which includes your various
preferences and tastes. If the prediction is accurate, it gives you the
"spooky" feeling that everything is predetermined and that you have no real
freedom to act. Everything you intend to do can be predicted by your
previous decisions and preferences. If the prediction is incorrect, you may
pay a price or be judged by something you have not done yet, but that you
might do. Thus, it ignores your individuality, and your ability to choose.

 

      In sum, the special features which explain our reluctance to share
genetic information and the importance we ascribe to legally protecting it
are highly relevant to the context of data profiling in general.  Perhaps
highlighting the connection between the two issues may serve to extend our
intuitive suspicion toward genetic profiling to general concerns regarding
data profiling. 

 

[1] Privacy & Human Rights 2003 - An International Survey of Privacy Laws
and Developments, at:

http://www.privacyinternational.org/survey/phr2003/threats.htm#Genetic%20Pri
vacy 

[2] Pauline T. Kim, "Genetic Discrimination, Genetic Privacy: Rethinking
Employee Protections For a Brave New Workplace", 96 NW. U.L. Rev. 1497,
1512-1515 (2002)

[3] Id., at 1499

[4] Morton Winston, "Genetic Discrimination", February 1, 2006, at:

http://outragesandmusings.blogspot.com/2006_02_01_outragesandmusings_archive
.html

[5] Richard Epstein, "A Third Cheer For Genetic Testing", University of
Chicago, Law Faculty Blog, dated October 18, 2005, at: 

http://uchicagolaw.typepad.com/faculty/2005/10/two_cheers_for_.html; and see
also: 

Richard A. Epstein, "The Legal Regulation of Genetic Discrimination: Old
Responses to New Technology", 74 B.U.L. Rev. 1 (1994) 

[6] Kim, supra note 3, at 1533-1534

[7] Jeroo S. Kotval, "Market-Driven Managed Care and the Confidentiality of
Genetic Tests: The Institution As Double Agent", 9 Alb. L.J. Sci. & Tech. 1,
16 (1998)

[8] Id., at 17-18; 

[9] Kim, supra note 3, at 1535-1537

 

 


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<div class=3DSection1>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'>      <b><span
style=3D'font-weight:bold'>Data profiling - understanding the =
costs</span></b><o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'>      <o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify;text-indent:.5in'><font =
size=3D2
face=3D"Courier New"><span =
style=3D'font-size:10.0pt;font-family:"Courier New"'>Throughout
the course we extensively discussed the growing trend of data profiling =
in
retail and “homeland security”. It seems that every website =
we
access today is trying to profile us, personalize our webpage, and offer =
us the
things we like, whether its music (Pandora), books (Amazon), or movies =
(Netflix).
For us it seems like a great deal. We give unimportant information about =
ourselves
and in return we are no longer anonymous in an urban society, we are =
back in
the little town where “everyone knows your name” and gives =
us
“the usual”. We are told that the price we pay is in terms =
of loss
of identity and privacy. But what is it exactly to lose one’s =
identity?  If
we have nothing to hide – what do we have to =
fear?<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'>      I
believe that one way to explain and relate to this sense of lost =
identity is
through the lens of genetic profiling. In this context, I am not =
referring to
the use of genetic data as an identifier but rather to the use of =
genetic data
to extract information about diseases and predispositions. As is widely
recognized, genetic data influences a wide range of physical and mental
diseases, from Huntington's disease and cancer to mental disorders and
character traits [1]. Various legal frameworks have been employed to =
prevent
misuse of genetic information including Title VII of the Civil Rights =
Act of
1964 and the Americans with Disabilities Act(ADA)[2]. Furthermore, =
</span></font><font
size=3D2 color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'>all but three states have =
passed some
sort of laws designed specifically to protect privacy or prevent genetic
discrimination in health insurance or employment. In addition, in 2000 =
</span></font><font
size=3D2 face=3D"Courier New"><span =
style=3D'font-size:10.0pt;font-family:"Courier New"'>President
Clinton issued an executive order prohibiting use of genetic information =
in
federal hiring and promotion decisions [3]. </span></font><font size=3D2
color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'>Efforts to pass a general =
federal law
have so far failed due to objections of employer groups [4]. Despite the =
lack
of a satisfactory solution in this area, it still receives a surprising =
amount
of attention from laymen, legislators and the executive branch. =
<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B'>      However, the special =
protection
granted to genetic information as compared to other medical information =
is not
self evident. Prof. Epstein from the <st1:place =
w:st=3D"on"><st1:PlaceType w:st=3D"on">University</st1:PlaceType>
 of <st1:PlaceName w:st=3D"on">Chicago</st1:PlaceName></st1:place> =
argues that “</span></font><font
size=3D2 color=3D"#333333" face=3D"Courier New"><span =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#333333'>genetic information is in =
principle no
different from any other kind of information that can be asked about a =
given
person, including the other medical exams of Eddy Curry. Does it really =
make
sense to prohibit the use of genetic information that might explain why =
a
person has shortness of breath and then allow the employer to look at =
medical
records that reveal that condition” [5]. Indeed, although =
employees are
usually willing to allow employers or insurance companies access their =
medical
records, they are generally much more reluctant to divulge genetic =
information.
So, if it is not the sensitive nature of medical information in itself, =
what is
so unique about genetic information that so many people consider it =
worthy of
special treatment? It seems that the most important answers that have =
been
suggested are also highly relevant to the context of data profiling in =
the wider
commercial and law enforcement context. <o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
color=3D"#333333"
face=3D"Courier New"><span =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#333333'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
color=3D"#333333"
face=3D"Courier New"><span =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#333333'>      <i><span =
style=3D'font-style:italic'>Firstly</span></i>,
it has been emphasized that the risk of error is in the genetic context =
is
significant. Correctly interpreting genetic tests is not a simple =
matter,
especially since in many cases the data reveals only a tendency rather =
than a
determinant medical conclusion. This problem is intensified because of =
the
cultural tendency to overestimate genetic information and treat it as an =
authoritative
key to understanding humans (“the human instruction book”, =
the
“book of life”) [6]. </span></font><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>Similarly, as data =
profiling
is also based upon statistical models, the risk of error is very real. =
The
arrest of an innocent person that by sheer chance matches a terrorist =
profile
is a possibility which cannot be ignored when we move from individual
assessment to statistical models. As in the genetic context, this risk =
is
intensified due to the presumed “reliability” of =
computer-generated
conclusions (“sorry sir, the computer said that you are a =
terrorist so you
must be one”)<font color=3D"#333333"><span =
style=3D'color:#333333'><o:p></o:p></span></font></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><i><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B;font-style:italic'>      =
Second</span></font></i><font
size=3D2 color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'>, genetic information is =
permanent and
irreversible. It reveals basic features of the individual which can be =
revealed
soon after conception and will not be altered for the rest of the
individual’s life [7]. </span></font><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>The digital profile =
which is
created for each person reflects similar features. Our private tastes, =
shopping
habits and secret wishes, create a profile that will be very difficult =
to
alter. The more information is gathered on each person, the less likely =
it is
that she will be able to reinvent herself and to just leave “the =
small
town” that is virtually created around her.</span></font><font =
size=3D2
color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'><o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><i><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B;font-style:italic'>      =
Third</span></font></i><font
size=3D2 color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'>, since several genetic =
features are
represented disproportionately among certain racial groups, it has been
suggested that they may serve as a basis for discrimination or =
stigmatization
of these groups [8]. This of course is a common problem with data =
gathering and
privacy invasion. A person is more than his data profile. As opposed to =
the
“small town” context in which our neighbors know us for what =
we are,
our database profile is just a collection of details on us. When it is =
misused,
obviously our most embarrassing and “abnormal” features will =
be
revealed and will define us, rather than our entire character =
features.<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><i><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B;font-style:italic'>      =
Finally</span></font></i><font
size=3D2 color=3D"#29303b" face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;
font-family:"Courier New";color:#29303B'>, and perhaps most importantly, =
it has
been suggested that misuse of genetic information robs individuals of =
their
autonomy, “</span></font><font size=3D2 face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>it subjects persons =
to
judgments based on biochemical attributes unmediated by individual =
choice or
effort”. It has a “reductive” nature, suggesting =
“that
our genetic material determines our future in some fixed, =
unalterable
way” [9]. Indeed, this seems to be the essence of the argument =
against
data profiling and predictive data models in general. It takes away your =
sense
of identity and reduces you to a sum of data bits which includes your =
various
preferences and tastes. If the prediction is accurate, it gives you the
“spooky” feeling that everything is predetermined and that =
you have
no real freedom to act. Everything you <i><span =
style=3D'font-style:italic'>intend</span></i>
to do can be predicted by your previous decisions and preferences. If =
the
prediction is incorrect, you may pay a price or be judged by something =
you have
not done yet, but that you <i><span =
style=3D'font-style:italic'>might</span></i>
do. Thus, it ignores your individuality, and your ability to =
choose.<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
color=3D"#29303b"
face=3D"Courier New"><span lang=3DEN =
style=3D'font-size:10.0pt;font-family:"Courier New";
color:#29303B'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'>      In
sum, the special features which explain our reluctance to share genetic
information and the importance we ascribe to legally protecting it are =
highly
relevant to the context of data profiling in general.  Perhaps
highlighting the connection between the two issues may serve to extend =
our
intuitive suspicion toward genetic profiling to general concerns =
regarding data
profiling. <o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier =
New"'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[1] Privacy & =
Human
Rights 2003 – An International Survey of Privacy Laws and =
Developments,
at:<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'><a
href=3D"http://www.privacyinternational.org/survey/phr2003/threats.htm#Ge=
netic%20Privacy">http://www.privacyinternational.org/survey/phr2003/threa=
ts.htm#Genetic%20Privacy</a>
<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[2] Pauline T. Kim,
“Genetic Discrimination, Genetic Privacy: Rethinking Employee =
Protections
For a Brave New Workplace”, 96 NW. U.L. Rev. 1497, 1512-1515 =
(2002)<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[3] <st1:State =
w:st=3D"on"><st1:place
 w:st=3D"on"><u>Id.</u></st1:place></st1:State>, at =
1499<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[4] Morton Winston,
“Genetic Discrimination”, February 1, 2006, =
at:<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'><a
href=3D"http://outragesandmusings.blogspot.com/2006_02_01_outragesandmusi=
ngs_archive.html">http://outragesandmusings.blogspot.com/2006_02_01_outra=
gesandmusings_archive.html</a><o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[5] Richard =
Epstein,
“A Third Cheer For Genetic Testing”, <st1:place =
w:st=3D"on"><st1:PlaceType
 w:st=3D"on">University</st1:PlaceType> of <st1:PlaceName =
w:st=3D"on">Chicago</st1:PlaceName></st1:place>,
Law Faculty Blog, dated October 18, 2005, at: =
<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'><a
href=3D"http://uchicagolaw.typepad.com/faculty/2005/10/two_cheers_for_.ht=
ml">http://uchicagolaw.typepad.com/faculty/2005/10/two_cheers_for_.html<;/=
a>;
and see also: <o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>Richard A. Epstein, =
“The
Legal Regulation of Genetic Discrimination: Old Responses to New =
Technology”,
74 B.U.L. Rev. 1 (1994) <o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[6] Kim, <i><span
style=3D'font-style:italic'>supra</span></i> note 3, at =
1533-1534<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[7] Jeroo S. =
Kotval,
“Market-Driven Managed Care and the Confidentiality of Genetic =
Tests: The
Institution As Double Agent”, 9 Alb. L.J. Sci. & Tech. 1, 16 =
(1998)<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[8] <st1:State =
w:st=3D"on"><st1:place
 w:st=3D"on"><u>Id</u>.</st1:place></st1:State>, at 17-18; =
<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify'><font size=3D2 =
face=3D"Courier New"><span
style=3D'font-size:10.0pt;font-family:"Courier New"'>[9] Kim, <i><span
style=3D'font-style:italic'>supra</span></i> note 3, at =
1535-1537<o:p></o:p></span></font></p>

<p class=3DMsoNormal style=3D'text-align:justify;line-height:150%'><font =
size=3D2
face=3D"Courier New"><span =
style=3D'font-size:10.0pt;line-height:150%;font-family:
"Courier New"'><o:p> </o:p></span></font></p>

<p class=3DMsoNormal><font size=3D2 face=3D"Courier New"><span =
style=3D'font-size:10.0pt;
font-family:"Courier New"'><o:p> </o:p></span></font></p>

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