Page 172 - Privacy in a Cyber Age Policy and Practice

160 PRIVACY IN A CYBER AGE

medical conditions, familial relationships, and even information about
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the DNA of other members of their family. George J. Annas, Chair of
the Department of Health Law, Bioethics and Human Rights at the Boston
University School of Public Health, adds that as technology advances, ana-
lysts will be able to discern an individual’s complete probabilistic medical
“future” by analyzing their DNA. 19
To address these concerns, one must avoid the trap of conflating DNA
samples and DNA profiles. ADNA sample is the material, including blood,
saliva, and other tissues, that is collected from an individual and that con-
tains his or her complete set of genetic information (“genome”). A database
of complete genomes, unless property supervised and limited in accessibility,
would raise the privacy concerns outlined above. DNA profiles, on the
other hand, merely document the length of certain fragments (“loci”) of
DNA that vary greatly from person to person. DNA profiles are derived by
analyzing DNA samples. Only a select few, especially variable (“polymor-
20
phic”) loci, are analyzed and included in the profile. (In the United States,
DNA profiles involve thirteen of these loci.) The tiny amount of genetic
information included in the profile, sometimes referred to as “junk” DNA,
reveals very little about the donor. DNA profiles contain no known infor-
mation about the donor’s “phenotype”—that is, their physical traits, including
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diseases to which they have, had, or are predisposed. However, the infor-
mation included is sufficient to identify the donor because the probability
of two individuals—except for identical twins—matching all loci is excep-
22
tionally small. Indeed, the courts have repeatedly recognized scientific
consensus that forensic DNA profiles functionally “reveal nothing more
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than the offender’s identity.” An amicus curiae brief by a coalition of
scientific experts in Maryland v. King, which was filed in support neither of
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the petitioner nor the respondent, summed up the issue as follows:

The DNA variations used for criminal identification represent common,
normal human variation and have, at most, only weak associations with any
diseases or physical or behavioral traits. However, they may provide powerful
information about the presence (or absence) of genetic relationships with
family members, as well as very weak information about geographic or
ethnic origins. 25

The crucial point, which critics should not overlook, is that the DNA
databases consist of DNA profiles, not DNA samples. Only a small amount
of genetic information is translated into a CODIS-compatible DNA profile
and stored in the database. In all but a handful of jurisdictions, the DNA
samples from which DNA profiles are derived are retained by the originating
laboratory.