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            DNA testing kits, such as 23andMe, have gained popularity
in the past few years. With the absurd increase in advertising and publicity,
it is no surprise that it has gained so much traction. Despite 23andme
providing services to the public in the form of genetic testing since 2006, its
services have not come without issues. Even though genetic testing provides
many benefits to the public, there are unavoidable problems which genetic
testing companies will need to address.

The
rise of DNA testing kits for consumer use was brought into the public eye by
CEO Anne Wojcicki of 23andme. She wanted to give consumers access to genetic
testing so that they could obtain information regarding to their health,
ancestry, and genetic predispositions (Hayden 2017). The genetic testing is
simple. It is described as a three-step process – order, spit and discover
(23andme). While the consumer side of the testing is relatively easy, the
scientific aspect of it can be difficult to understand for the consumer. A
simple polymerase-chain reaction is used to amplify the DNA from the consumer’s
cheek cells which are digested into smaller pieces (Visher 2013). The DNA
fragments are placed on a DNA chip that contains the probes corresponding to
known genetic predispositions (Visher 2013). The consumer is then given a graph
that shares the genetic health risk reports, carrier status reports, wellness
reports, traits reports, and ancestry reports depending on the package
purchased (23andme).

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Even
though ancestry testing is a major component of the two packages, the package
including disease reporting is the one that leads to mass hysteria. The ease of
knowing what diseases one is predisposition to is beneficial while still being detrimental.
Consumers would know what diseases they are potentially vulnerable to and look
for the precursors to the disease. They could also take preventive measures to
ensure that their health is relatively well. This opens the field of
preventative medicine to a whole new level. With the genetic information being
readily available through 23andme’s database, pharmacogenetics becomes more
relevant through easy accessibility of the data. Pharmacogenetics is the study
of how individuals will respond to drugs based on inherited genetic
differences. The UK branch of 23andme has offered 12 pharmacogenetic tests
which would help determine the sensitivity to certain drugs. While these
results claim an expected reaction, it is equally important to consult a health
professional prior to making any decision before making drastic decisions in
terms of receiving drug prescriptions.

While
having knowledge about the diseases your genome may hold seems like a great
idea, it is not made out to be. The general public does not understand what a
predisposition to a disease is – the majority thinks that since the particular
allele is present, the disease will be developed. A second problem with genetic
risk factor is that if it was low or nonexistent, it is taken as if the
consumer would not develop the disease. This initially caused huge problems
with the consumers as they were left to interpret the meaning of their genetic
testing. Became a question of whether “you have it or you do not” sort of deal.
Dr. Bren Bradley of Yale summarized this major problem with genetic testing
best, “promoting a broader public interest in genomics… is always a good
thing. However, that does not necessarily mean that it will promote public
understanding of genetic ancestry and genetic risk” (Visher 2013). This was a
concern of the FDA from the start of 23andme, which shut down the initial
genetic risk testing until April 6, 2017, when it released a statement stating
that would allow for ten genetic risk tests, including Parkinson’s and
Late-onset Alzheimer’s (FDA 2017).

As
personal genotyping continues with a full head of steam, it is important to
keep in mind the lack of scientific literacy of the public. This is where
23andme devoted a third party to interpret the results for their customers.
They explicitly state that they send the data to be interpreted at third party
lab with secrecy in sample labeling to protect the costumer (23andme). While
this is great for the company as they don’t have to interpret the results
themselves, this adds a layer of sophistication. There is another company that
is responsible for the interpretation of their own genetic data. Despite this, the
customer has access to their raw genetic data. This opens the door for other
third parties to make their own profits (The Medical Futurist 2016). This gives
consumers access to unregulated tools to exam their genome. This can lead to a
rise in false positives as well as consumers taking drastic measures such as
the rising fetish with homeopathic medicine, organic, and non-GMO “cures.”
Without proper regulation, third parties can promote over the counter “cures”
and cause mass hysteria over some misinterpreted A’s and C’s.

While
many of the issues that the FDA is taking up with 23andme are in response to
the accuracy of the results and the response to the predispositions for disease,
the bigger questions to address are the usage intentions of the data being collected.
Their privacy policy states that they keep the patients’ data secure when
sending for analyses to the third-party lab, they reserve the right to
advertise products to the consumer based on the results (23andme). This opens
the potential for that data to be sold to others – the primary concern is
insurance companies and pharmaceutical industry. Even though the company
commits to its stance on not selling consumer genetic data, Wojcicki is married
to Sergei Brin, founder of Google (Seife 2013). Google once stood by its
commitment to ensure consumer privacy only to eventually sell out and make
loads of cash. There is a major concern about what the long-term implications
of genetic data collection and the potential impact it will have on purchasing
insurances. How will insurances react to knowing someone is genetically
predisposed to certain diseases? Will they charge specific groups more? Or will
they not ensure them at all? When genetic data is sold to insurance companies,
not if, as I am certain that it will happen in the near future, many consumers
that obtained genetic testing could be left to dry by their curiosity.

Learning about
personal genetics and ancestry is important and beneficial, but it comes at the
expense of privacy. Once the data is obtained by a genetic company, it is
stored in an open-access database for the public and its interpretation. With the
push of companies like 23andme in advertising, I would not be surprised if
genetic testing becomes the norm after someone is born. I believe that genetic
testing has its perks, but I do not believe that giving up your genetic privacy
is worth the cost.

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