Our lives are surrounded byBig Data. Enormous quantitiesof personal informationare stored on private and public databases,revealing our purchasing preferences,search engine histories, social contacts,and even GPS locations.Perhaps the most personal of all BigData entries are genome sequences.Tens of thousands of individuals arenow donating DNA for whole-genomesequencing—by both private genesequencingcompanies and public researchprojects. Most people who donatetheir DNA for sequence analysis do sowith little concern. After all, what consequencescould possibly come fromaccess to gigabytes of As, Cs, Ts, and Gs?Surprisingly, the answer is—quite a lot.One of the first inklings of geneticprivacy problems arose in 2005, whena 15-year-old boy named Ryan Kramertracked down his anonymous spermdonorfather using his own Y chromosomesequence data and the Internet.Ryan submitted a DNA sample to a genealogycompany that generates Y chromosomeprofiles and puts people intocontact with others who share similargenetic profiles, indicating relatedness.The search matched Ryan with two menwith the same last name. Ryan combinedthe name information with the only informationthat he had about his spermdonorfather—date of birth, birth place,and college degree. Using an Internetsearch, he obtained the names of everyoneborn on that date in that place. Oneman with the same last name as his twoY chromosome matches also had theappropriate college degree. Ryan thencontacted his sperm-donor father.More recently, several published reportsreveal the ease with which anyone’sidentity can be traced using DNAsequenceprofiles and Internet searches.These searches can reveal people’s identitiesand disease susceptibilities.To many people, the implications of“genomic re-identification” are disturbing.Genomic information leaks could revealpersonal medical information, physicalappearance, and racial origins. Theycould also be used to synthesize DNA toplant at a crime scene or could be used inunforeseen ways in the future as we gainmore information about what residesin our genome.Your TurnTake time to consider the followingquestions concerning the ethicalchallenges of ensuring geneticprivacy. Question: What are some of the ethical argumentsfor and against maintaininggenetic privacy and anonymity?
Our lives are surrounded by
Big Data. Enormous quantities
of personal information
are stored on private and public databases,
revealing our purchasing preferences,
search engine histories, social contacts,
and even GPS locations.
Perhaps the most personal of all Big
Data entries are genome sequences.
Tens of thousands of individuals are
now donating DNA for whole-genome
sequencing—by both private genesequencing
companies and public research
projects. Most people who donate
their DNA for sequence analysis do so
with little concern. After all, what consequences
could possibly come from
access to gigabytes of As, Cs, Ts, and Gs?
Surprisingly, the answer is—quite a lot.
One of the first inklings of genetic
privacy problems arose in 2005, when
a 15-year-old boy named Ryan Kramer
tracked down his anonymous spermdonor
father using his own Y chromosome
sequence data and the Internet.
Ryan submitted a DNA sample to a genealogy
company that generates Y chromosome
profiles and puts people into
contact with others who share similar
genetic profiles, indicating relatedness.
The search matched Ryan with two men
with the same last name. Ryan combined
the name information with the only information
that he had about his spermdonor
father—date of birth, birth place,
and college degree. Using an Internet
search, he obtained the names of everyone
born on that date in that place. One
man with the same last name as his two
Y chromosome matches also had the
appropriate college degree. Ryan then
contacted his sperm-donor father.
More recently, several published reports
reveal the ease with which anyone’s
identity can be traced using DNAsequence
profiles and Internet searches.
These searches can reveal people’s identities
and disease susceptibilities.
To many people, the implications of
“genomic re-identification” are disturbing.
Genomic information leaks could reveal
personal medical information, physical
appearance, and racial origins. They
could also be used to synthesize DNA to
plant at a crime scene or could be used in
unforeseen ways in the future as we gain
more information about what resides
in our genome.
Your Turn
Take time to consider the following
questions concerning the ethical
challenges of ensuring genetic
privacy.
Question: What are some of the ethical arguments
for and against maintaining
genetic privacy and anonymity?
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