West Virginia University Western Feminist Approaches Research Essay & Proposal The assignment that is two part : ** Part one answer questions about written

West Virginia University Western Feminist Approaches Research Essay & Proposal The assignment that is two part : ** Part one answer questions about written research report sample:Use the (sample research report) to complete the attached document (evaluation). ** Part two is a Research Report Essay.instruction in attached (Research Assignment Sheet) Research Report
Risks Associated with Consumer Use of Commercial Recreational Genetic Ancestry Kits
The focus of this research was whether commercial recreational genetic ancestry
companies are exercising safe and fair practices pertaining to the data they obtain through directto-consumer (DTC) services. Specifically, what are the risks pertaining to use of these services?
Recreational genetic ancestry kits refer to the commercially sold DNA test and summary analysis
offered by popular companies such as 23andMe. Private companies sell services to consumers
that include an analysis of DNA— an analysis which covers the decoding of a person’s genome.
Geneticists use the information to determine certain aspects of a person’s health-such as
predisposition to diseases or dietary recommendations- along with information on relatives,
living and deceased. The cost for these services ranges from $80-$200, making it highly
affordable to the average consumer. With data this sensitive in nature, questions regarding how it
is being used and whether its being re-distributed for secondary purposes come into focus.
Research suggests that companies, namely two-23andMe and AncestryDNA- are engaging in
activity that puts the health and genetic information of customers at risk of being stolen or
accessed by unintended parties. Both companies have already began generating profit off the
data by offering access to third parties, including but not limited to, law enforcement, insurance
providers, and drug manufacturing companies. Users of these services may be unaware that their
DNA samples are being used and redistributed for other purposes, beyond providing individuals
with a family tree and health summary. A recent study revealed that many companies are not
forthright in the information provided during the acquisition of consent (Hazel and Slobogin,
2018). Because this subject is relatively new, there is not a significant body of research published
yet. The aim of this paper will be to raise awareness of the risks for consumers and illuminate
gaps in policy that govern the practices of these companies. The companies have been criticized
to some degree, but there has been a lack of action taken to not only inform the consumer, but
better protect their privacy.
Permitting police access to databases is just one of the ways that companies place
customers at risk. Since the arrest of Joseph DeAngelo (a.k.a. Golden State Killer) in 2018, the
subject of broad police access to genetic genealogy databases has come into question. DeAngelo
was arrested through unconventional means, after investigators submitted a profile of his DNA to
GEDMatch. GEDMatch is a service similar to 23andMe, which can provide individuals with
ancestral history. By posing as the owner of the DNA sample, police were able to obtain
information about his living relatives through the family tree given to them by GEDMatch. Since
the information became highly publicized, there has been evidence to suggest that police
departments across the country have already began to engage in similar practices in order to
identify criminals where there are no other leads in the case. In other words, cold cases have
been reopened at a higher rate since the news of DeAngelo’s arrest broke. By allowing law
enforcement to access databanks containing millions of DNA profiles belonging to noncriminals, the companies are exposing its users to risk and creating the potential for innocent
person(s) to be implicated in a crime. Moreover, the likelihood an individual that is not actually
responsible will be pinpointed is fairly high due to the way the system’s technology produces its
results. A search involves a scan of the database and yields “probable matches.” Because the
result produced is not a “definite match,” DNA is often disregarded as a sole means of gaining a
conviction in court. It is often inconclusive and there are various aggravating factors which make
it even more likely to be so, that occur at a frequent rate. These could be contamination,
corruption of a sample, degradation, impropriety by law enforcement, incorrect crime lab
procedures, etc. Through an interview I conducted with Scott VanMeter, the Sheriff of Raleigh
County, located in Beckley, WV. I was able to ascertain where local law enforcement stands on
the matter. The interview did in fact confirm what is already known to most, that police are eager
to use these tools if it will aide in their hunt for a violent criminal. There is no disputing that
everyone is in agreement when it comes to catching offenders in the pursuit of justice for victims
and their loved ones. However, it does further highlight the vulnerabilities companies expose
their customers to by allowing law enforcement broad access. For example, when asked the
question “does law enforcement look favorably upon new means of investigatory techniques or
would you say they generally prefer the more traditional ways of conducting an
investigation?”— Sheriff VanMeter responded, “Yes, they do. They prefer the newer ways
because it has allowed us to catch a lot of criminals.” Additionally, when I asked the Sheriff
whether or not he believed it was a positive thing that investigators have adopted these
techniques in order to develop leads in cold cases, he responded, “As a police officer, I think so.
Especially in cold cases, because most are murders. Murder is the absolute worst, because it
takes everything from the victim. So I support any way that will allow us to catch the person or
persons responsible.” This indicates that law enforcement have a positive view of these methods
and gaining access to large databanks which contain millions of DNA profiles can only help
them in their endeavors.
Another way which users of recreational genetic ancestry kits place themselves at risk
pertains to insurance providers and premiums they offer. In 2008, a federal law was passed
known as the Genetic Information Nondiscrimination Act (GINA), which made it illegal for
health insurance providers in the United States to use genetic information in decisions about a
person’s health insurance eligibility or coverage. This means that health insurance companies
cannot use the results of a direct-to-consumer genetic test (or any other genetic test) to deny
coverage or require you to pay higher premiums. However, GINA is not applicable when an
employer has fewer than 15 employees, and it does not cover people in the U.S. military or those
receiving health benefits through the Veterans Health Administration or Indian Health Service
(U.S. National Library of Medicine, 2019). GINA does not apply to other forms of insurance,
such as disability insurance, long-term care insurance, or life insurance. Companies that offer
these policies have the right to request medical information, including the results of any genetic
testing, when making decisions about coverage and rates. Some of these companies request
information about genetic testing as part of their application process, but others do not (U.S.
National Library of Medicine, 2019). It is unclear whether genetic information, including the
results of direct-to-consumer genetic testing, will become a standard part of the risk assessment
that insurance companies undertake when making coverage decisions. Thus, it is fair to assume
that private DTC companies in possession of the genetic data would cooperate with insurance
companies the same way they cooperate with law enforcement, especially if there is monetary
incentive. Therefore, submitting a DNA sample to a direct-to-consumer company may adversely
affect the ability for some to obtain fair insurance premium rates.
A third risk consumers must consider is the eventuality that their DNA sample could be
captured by a third party and used for various research purposes. Both Ancestry and 23andMe
have a history of sharing anonymized consumer data with interested third parties. Perhaps the
best illustration of this can be seen through the recent $300 million investment placed into
23andMe by pharmaceutical developer GlaxoSmithKline (GSK). The new partnership agreement
stipulates that GSK may mine 23andMe’s customer data for potential targets in their efforts to
develop a new class of drugs (Brodwin, 2018). In addition, 23andMe collaborates with several
other drug companies as well as with institutions like P&G Beauty, the company behind Pantene
shampoo and the antacid Pepto-Bismol (Brodwin 2018). Helix, the genetics-testing company that
was once Illumina, has partnerships with roughly 25 companies as well (Brodwin 2018). It is
worth noting that 23andMe does provide an offer to their customers to “opt-out.” While that is
true, it is also likely that many customers remain unaware that this option still exists after the
date of the initial consent is signed. In other words, if an individual has already submitted DNA,
they may retroactively cancel that consent. However, the cancellation of consent to research for
23andMe users does come with a stipulation that is any research a person’s information has been
used for up until 30 days after the date of the consent revocation, will move forward and cannot
be undone (23andMe, 2019). The company’s website states,
“At any time, you may choose to change your consent status to either take part in
23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information
from 23andMe Research. Your consent status is located in the 23andMe “Settings” page. If you
withdraw all or some of your Genetic & Self-Reported Information, 23andMe will prevent that
information from being used in new 23andMe Research initiated after 30 days from receipt of
your request (it may take up to 30 days to withdraw your information after you withdraw your
consent). Any research on your data that has been performed or published prior to this date will
not be reversed, undone, or withdrawn.”
Another potential risk consumers will face in the use of recreational commercial genetic
testing kits pertains to the actual exchange of data from the original source to a secondary source.
It is now known that at least one of the four leading recreational commercial genetic testing
companies, 23andMe, collaborates with third parties and drug developers for the purpose of
medical research. With that information, consumers should also know that the exchange of data
from one party to the next creates its own separate risk. When there is a transference of sensitive
data such as DNA, it opens the very real possibility that the data will be intercepted by an
unintended third party. At the beginning of 2019, MIT estimated 26 million or more had
submitted their DNA to four leading commercial ancestry and health databases (Regalado,
2019). At the current rate, the number will grow to more than 100 million in 24 months
(Regalado, 2019). That number does not include the 26 million individuals’ relatives whom are
also at risk due to the ‘familial matching’ function used by genetic researchers to identify family
trees. To demonstrate the scale of what is potentially at risk, Moran (2018) referenced a highprofile data breach involving a company called Cambridge Analytica (C.A.). The breach
occurred after C.A. captured and harvested 87 million Facebook profiles (70.6 million of which
were from the United States), and then used the harvested profile data for political advertising
purposes. The company was able to gain access to the profiles only after obtaining consent
through a fake service offered in the form of a personality test. When users agreed to take the
personality test, the terms and conditions included consent to access their profile and their profile
connections. Once a user consented, the profile and its connections were subsequently seized and
harvested. Moran (2018) stated, “DNA databases amassed by for-profit organizations such as
23andMe and Ancestry.com bear a striking resemblance to the Cambridge Analytica case.
Members of the public are giving consent to their most personal data under the auspices of
receiving a particular service.”A study conducted by Dr James Hazel and Christopher Slobogin
into the privacy practices of 90 commercial recreational genetic testing companies found that the
majority of the companies’ privacy policies were inadequate (Hazel and Slobogin 2019). Some
companies only had policies governing use of their website, while others failed to indicate
whether they strip away personally identifiable information from a sample before sending it off
for testing (Hazel and Slobogin 2019). That information is disconcerting to say the least. But it is
yet another indicator of how the companies put their customers at risk.
Private companies are not properly regulated and there is little legal precedent for privacy
rights violations through genetic databanks. This creates a problem. Public awareness is growing
on the matter, but the rate and volume of people willing to participate in these services suggest
that knowledge of the dangers remain minimal in a substantial portion of the population. A study
on public attitudes pertaining to this subject shed light on how people feel about law enforcement
gaining access to databases like GEDMatch. The study, conducted by Guerrini et al. (2018),
showed that the public agreed with the tactic when asked about it in a context that was relevant
to the Golden State Killer case (Guerrini et al. 2018). This is most likely because the man’s
crimes were egregious, therefore any methods employed in order to catch him would have been
justified. However, the public was not in agreement when it came to the same technique in order
to positively identify criminals of less serious crimes such as theft and burglary. According to the
same study, results showed that public opinion indicated little concern for the possibility of false
convictions, disproportionately affecting minorities, and other potentially negative outcomes
(Guerrini et al. 2018). The study’s results stated,
“Among the 1,587 respondents (Table 1), the majority supported police searches of
genetic websites that identify genetic relatives (79%) and disclosure of DTC genetic
testing customer information to police (62%), as well as the creation of fake profiles of
individuals by police on genealogy websites (65%) (Fig 1). However, respondents were
significantly more supportive of these activities (all p < 0.05) when the purpose is to identify perpetrators of violent crimes (80%), perpetrators of crimes against children (78%), or missing persons (77%) than when the purpose is to identify perpetrators of nonviolent crimes (39%).” A larger body of research on the rules which should govern what DTC companies may do with collected data is lacking. Additionally, there ought to be laws on how companies may present the information regarding what possible uses the genetic data may have once it is obtained, whether it will be sold, exposed to a criminal investigation, reviewed by insurance companies, and so on. Bio-recognition data cannot be altered, because it refers to human traits that are naturally occurring, such as retinas, fingerprints, and facial identifiers. Therefore, deanonymized data would result in permanent compromise. The seriousness of these risks outlined cannot be understated. Public awareness on the issue is key, as well as action to produce policy by legislators to help protect vulnerable individuals. The paper can serve as a guide to any person interested in learning about the risks, specifically prospective customers who may be considering purchase of a kit. Works Cited: Brodwin, E. “DNA-testing companies like 23andMe sell your genetic data to drug-makers and other Silicon Valley startups.” Business Insider, 2018. Retrieved from https://www.businessinsider.com/dna-testing-ancestry-23andme-share-data-companies2018-8 Conger, S. “Personal Information Privacy: A Multi-Party Endeavor.” Journal of Electronic Commerce in Organizations. Volume 7, Issue 1, 2009. Pages 71-82. Retrieved from https://search-proquest-com.www.libproxy.wvu.edu/docview/236481679 Dedrickson, K. “Universal DNA databases: A Way to Improve Privacy?” Journal of Law and Biosciences. Volume 4, Issue 3, 2018. Pages 637-647. Retrieved from https://doi.org/10.1093/jlb/lsx041 Dresser, R. “Families and forensic DNA profiles.” The Hastings Center Report. Volume 41(3), 2011, pp. 11-2. Retrieved from http://www.libproxy.wvu.edu/login?url=https://searchproquest-com.www.libproxy.wvu.edu/docview/912304865?accountid=2837 Ducharme, Jamie. “A Major Drug Company Now Has Access to 23andMe’s Genetic Data. Should You Be Concerned?” Time Magazine, 2018. Retrieved from https://time.com/5349896/23andme-glaxo-smith-kline/ Gill, P. “DNA Evidence and Miscarriages of Justice.” Forensic Science International. Volume 294, 2019, Pages e1-e3. Retrieved from http://doi.org/10.1016/j.forsciint.2018.12.003 Goetz, Thomas. (2007). “23andMe Will Decode Your DNA for $1,000. Welcome to the Age of Genomics.” Wired. Retrieved from https://www.wired.com/2007/11/ff-genomics/ Gutmann, A, Wagner, J.W. “Found Your DNA on the Web: Reconciling Privacy and Progress.” The Hastings Center Report. Volume 43, Issue 3, 2013, Pages 15-18. Retrieved from https://doi-org.www.libproxy.wvu.edu/10.1002/hast.162 Guerrini, C., Robinson, J., Peterson, D., & McGuire, A. “Should police have access to genetic genealogy databases? Capturing the Golden State Killer and Other Criminals Using Controversial New Technique.” PLOS Journal of Biology, 16(10): e2006906, 2018. Retrieved from https://doi.org/10.1371/journal.pbio.2006906 Hazel, J and Slobogin, C. “Who Knows What, and When?: A Survey of the Privacy Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies.” Cornell Journal of Law and Public Policy. Vanderbilt Law Research Paper, No 18-18, 2018. Retrieved from https://ssrn.com/abstract=3165765 Jouvenal, J. “To find alleged Golden State Killer, investigators first found his great-great-greatgrandparents.” The Washington Post, 2018. Retrieved from https://www.washingtonpost.com/local/public-safety/to-find-alleged-golden-state-killerinvestigators-first-found-his-great-great-great-grandparents/2018/04/30/3c865fe7-dfcc4a0e-b6b2-0bec548d501f_story.html Kennett, Debbie. “Using genetic genealogy databases in missing persons cases and to develop suspect leads in violent crimes.” Forensic Science International, Volume 301, 2019 Pages 107-117. Retrieved from https://www-clinicalkeycom.www.libproxy.wvu.edu/#!/content/playContent/1-s2.0S0379073819302014?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2F pii%2FS0379073819302014%3Fshowall%3Dtrue&referrer= Korf, B. R. “Genomic Privacy in the Information Age.” Clinical Chemistry. Volume 59.8, 2013 1148-50. Retrieved from https://search-proquestcom.www.libproxy.wvu.edu/docview/1432297833?accountid=2837 Krishan, R., Mostafavi, R. “Biometric Technology: Security and Privacy Concerns.” Journal of Internet Law. Volume 22, Issue 1, 2019, pp. 19-23. Retrieved from http://web.a.ebscohost.com.www.libproxy.wvu.edu/ehost/pdfviewer/pdfviewer?vid=1&si d=6c1ed024-7e37-482c-9d14-d2448c95bae4%40sdc-v-sessmgr03 Murphy, E. “Law and policy oversight of familial searches in recreational genealogy databases.” Forensic Science International. Volume 292, 2018, pp. e5-e9. Retrieved from https://www-clinicalkey-com.www.libproxy.wvu.edu/#!/content/playContent/1-s2.0S0379073818305280?returnurl=https:%2F%2Flinkinghub.elsevier.com%2Fretrieve%2F pii%2FS0379073818305280%3Fshowall%3Dtrue&referrer= Moran, K. S. “Damned by DNA — balancing personal privacy with public safety.” Forensic Science International (Online), vol. 292, e3-e4, 2018. Retrieved from http://dx.doi.org.www.libproxy.wvu.edu/10.1016/j.forsciint.2018.09.01 National Institute of Justice. “DNA at Our Fingertips: For... Purchase answer to see full attachment