The goal of this
class was to discuss the broader issues related to how DNA plays out in not
only the scientific setting, but also the larger social arena and the
accompanying cultural ramifications. We began by analyzing genetic ancestry
testing by looking in depth at four companies offering these types of tests to
a consumer market. We then moved on to the topic of predictive genomics and
personalized medicine and what this told us about the role of race in the new
genomics era.
We began our
discussion of genetic ancestry testing with a basic overview of the two main
types of tests, mtDNA and y chromosome. Mitochondrial DNA (mtDNA) is passed
down to an individual from their mother and tests of this portion of the DNA
therefore give us information about the maternal lineage. Y chromosome testing,
on the other hand, can only be done in males (as they are the only ones with Y
chromosomes) and will show only the paternal lineage. In order to gain better
incite into this culture of genetic ancestry testing, we analyzed four of the
major companies offering these products in an attempt to answer the following
questions:
What are they selling?
What do they claim to tell you about
your genetic ancestry/health?
How does the test actually function?
What is the test actually giving
consumers?
What do they do with your data?
Would you recommend actually doing
the test? For whom? Why or why not?
The analysis of
National Geographic genetic ancestry testing centered mainly on the company’s
given reason for involvement with testing. The company emphasized that the
purpose of the project was to establish the migratory patterns of early humans,
framing participation as being both a contribution to science and a chance to
learn more about your own history. It states that it stands apart from its
competitors as a result of this scientific basis and emphasizes a social
network of interacting with people who you might not be related to in any close
genetic way, reflecting the belief that the project is more about the
collective than an individual’s personal genealogy. This collective interest
means that an individual cannot receive information about his or her own more
recent genealogy by using this test. Further, while the DNA is not tied to any
identifying information, the information is available to any previously
approved researcher working on the tracking project. The whole scientific guise
of using personal information was a bit unsettling when it came to deciding
whether or not to recommend this to others. Had they come straight out with the
fact that the information was needed for research our willingness to recommend
may have been higher.
Family
Tree DNA was notable for the variety of options it provided as well as a highly
questionable clause in their privacy statement. The company offers different
levels of thoroughness in their testing at different price points, meaning that
the consumer must pay into how much information they’d like to get. The company
also advertised that they had the largest database of samples and, similar to
National Geographic, encouraged networking and the connection of genetic
results with socially recognized kinship groups through their Family Surname
Project. Our primary reason for not recommending the company, along with the
high cost, was that the privacy policy seemed to make very personal information
very possibly available to anyone who wanted to access it. The policy has a
beneficiary clause that states that, should the test taker pass away without a
named beneficiary, Family Tree DNA retains any records and DNA related to that
individual. The company also utilizes a release form that must be signed in
order for an individual to connect with others that match their genealogy in
some way, thereby withholding what many likely see as a main purpose of the
website if that person does not release their data to the company.
AncestryDNA
by far went the most in depth into the process they use to run and analyze the
data their clients provide. The company uses autosomal testing and a reference
panel of 3000 people who have been defined as representative of their race
based on the fact that they have lived in one of 26 different regions for a
very long time. They then test an individual’s sample for 700,000 different
markers and compare these to the reference panel. Each marker, they explain,
has a different frequency in each population and they make an estimate for a
sample that is their “best guess of the percentage for each population.” While
they seem trustworthy for going in depth with their methodology, we found this
information gave us more ways to discredit the validity of the results. The
confidence intervals they provide with each result have a possibility of
including 0%, for example, meaning that the individual might not have any of
that ethnicity at all, despite being told that they may. The 26 regions drawn
for the reference panel also seemed very arbitrary and drawn along political
boundaries and the methodology of family living history as a determinant of how
representative an individual might be was concerning.
Finally,
the company 23 and Me gave insight into the possible repercussions of
attempting to make health claims based on genetic testing. The company came
under FDA scrutiny for including claims about disease risk in the results of an
individual’s genetic ancestry testing. These claims are only outlawed in the
United States, however, so an individual accessing the services from another
country could still receive this information, and clients that had previously
been given this information will still have access to it. The health claims
made seemed to localize disease within the person to make them responsible for
their own illness, regardless of any environmental factors that may have been
involved.
As
a wrap up to this section of our discussion, we looked at the implications of
these genetic ancestry tests. These tests play a major role in reshaping
personal identities and communities. Many African Americans, for example,
cannot trace their history through record because of slavery and the violence
it inflicted on families. For this community, genetic ancestry testing is a way
to recover history that has been lost. Native Americans may use DNA to
determine tribal membership. Along with this membership comes rights, issues of
governance, cultural and political authority, and healthcare from the
government. Membership in this community is much more than being able to check
the box on the census form. We also see some of the dangers of commercialization
– with companies that are so non-transparent, what are their goals and motives?
In order to deal
with the meaning of race in an era of predictive genomics and personalized
medicine, we first noted that race was at least previously accepted as a social
construction. Race itself still has very real ramifications, but these are the
result of sociocultural influences rather than biological fact. We also noted
that there exists more genetic variation within racial groups than between the
groups themselves.
The meaning of race in the genomics
era seems to be a good intention gone wrong. The politics of inclusion we see
today want to recognize difference in order to be inclusive of that difference
by broadening research subjects. While we aren’t using race as a means of
justifying slavery and making people feel inferior, it is problematic that race
has become a way of pinpointing people for testing and treatment. Certain
aspects of genetics are good, we said, such as the discovery of a gene associated
with sickle cell disease. The problem arises when sickle cell becomes a ‘black
disease’ in looking for cures and treatments. In becoming a racialized disease,
we see a shift in mentality that says it’s not just a person that has a gene
that makes them sick, but instead it is the entire racial population that deals
with this. We enter a reductionist viewpoint in which risky behavior, lack of
resources, and unhealthy lifestyle choices are replaced solely by race as the
main risk factor for disease. In order to try and understand this shift toward
the detrimental use of race in genetics we looked back to the Human Genome
Project, whose initial message was that all of our DNA is mostly the same.
Research, however, has shifted to detail how we differ from one another. We
know we’re similar to bananas and fruit flies but we don’t place much emphasis
on research here. Why do we emphasize certain kinships and not others?
While we had noted that the outputs
of research were problematic, we took a step back and realized that indeed the
inputs to research brought their own baggage. First, there are ways in which
race is being used to quantify differences genetically. Second, in recruiting,
storing, recording, and sorting DNA, scientists use socialized and historical
categories to label and name the DNA samples. Scientists build off of United
States Census data, where everyone is already well organized and highly categorized.
Sorting data through these given categories, however, presents us with somewhat
of a loop. We come to conclusions that fall into the categories we have already
set.
We
discussed how the world of science itself makes it difficult to break out of
this cycle of racialized research. In the world of science, anything that is
not biological or genetic is not considered valid. While some things are
actually genetically linked, others are entirely socially constructed. As a
result of the value place on genetics however, scientists have no interest in
looking into the possible social behaviors that may influence disease.
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