Running Head: Assignment 2 1
Running Head: Assignment 2 1
Assignment 2
Mohammad Raza
Regis University
MSDS 640
Running Head: Assignment 2 2
Abstract/ Overview:
As mentioned in the case study “SNPs and Snails …” by Walser-Kuntz, Deel, and
Singer, the use of SNPs can yield many benefits for improving human lives, yet, at the same
time, it can be catastrophic. They discuss how politicians and companies can use information
obtained from genome/SNP research to make important decisions impacting the lives of the
individuals in the study, like hiring/ firing, insurance premiums, etc. This creates concern on
behalf of the subjects about whether they would like to participate in studies since their
information may be made available in public datasets. Though laws have been put in place to
protect information, like ADA and HIPAA, these are not air-tight, and new laws are trying to be
made as band aid solutions rather than remedying by updating current laws. When blockades like
these are made in the minds of people, research becomes difficult to conduct, and when that
With these concerns in mind, some ethical issues a scientist might face when working with
SNPs are:
1) To share findings in efforts to find cures and further research – When conducting genome
sequencing research, it is the duty of scientists to share what they find to increase efforts
in finding cures to any potential diseases and to customize them with respect to the
patient. They must share their findings in order to help other scientists with furthering
their research and reducing time, effort, and cost in doing so. Like, as posted on
axios.com, the police force used DNA samples from a crime scene and compared it with
publicly available data to catch the Golden State Killer. Companies like FamilyTreeDNA
are also accused of, and have apologized for making genomic data publicly available,
2) To get consent from and share findings with patients regarding possible diseases - They
must also inform the patient/ subject in study about any medical issues they might be
affected by based on geniality and ancestral history. As was the case with the Facebook
scandal of conducting research using positive and negative skewed news feeds to users to
the case of Terri Seargent in 1999, the repercussions of having data publicly available can
be catastrophic for patients partaking in studies. This can also wreak havoc on things like
insurance policies being given/ not given and rate increases or certain coverages being
waived.
Running Head: Assignment 2 4
If scientists do not share their results, the level of technological prowess seen amongst us
today may not have existed. This might also cause certain diseases to go without finding cures,
but if scientists do share patient info, it might lead to patients facing other issues like losing their
jobs, etc.
Running Head: Assignment 2 5
The opposing stance I will take will be of the EEOC because it is their responsibility to
ensure everyone gets an equal opportunity in terms of career choices and work positions. I chose
this because I worked for a while as a stocker at an Amazon warehouse and one of my colleagues
had a disability that obstructed his ability to lift heavy objects. Though he had a handicap, his
will to be an equal part of the workforce was admirable, even if his struggle was obvious.
Another reason for doing so is the fact that I am an immigrant and have had to face issues when
applying for jobs since my Undergrad is from Pakistan and my name makes people question my
ability to comprehend English at the same level as that of locals of native English speaking
countries. I find it amusing to hear people say my accent is better than they thought, but it does
remind me to appreciate the EEOC because there are many people who are limited due to
cultural, religious, physical differences, etc, but are given an opportunity to shine.
In regards to the concerns faced by scientists and with respects to the responsibility of
EEOC, it is imperative to protect the rights of all individuals in terms of finding work and career
prospects. Understanding the importance of sharing information, scientists must take precautions
when doing so, such as the ones outlined in the Data Security section of the article “Applied and
Transactional Genomics” Volume 8, pages 23-30, where important identifiers must be removed
so as to make that information anonymous in a way and avoiding the identification of subjects all
together. According to the article “SNPs and Snails…” by Walser-Kuntz, Deel, and Singer, out
of over 6 billion people with over 3.2 billion nucleotides per human, any one individual can be
identified by 30 to 80 SNPs, and that makes it very easy to target any one person. This data may
later be made available in public data sets and employers can use this information by easily
searching for it on the Web to influence their screening and hiring decisions, thus reducing the
“Equal Opportunity” portion of it. Patients/ subjects might be enticed with offers and incentives
Running Head: Assignment 2 6
to partake in research, but access to that data wouldn’t be much of an issue when giving consent.
The problem occurs when informed consent is taken advantage of with retrospective means and
the previously collected data is then used for other purposes, thus violating privacy laws. This
can also give rise to other problems if patients know they are predisposed to certain health risks
and companies might take advantage when offering health and life insurance like increasing
premiums, limiting coverage, or asking for waivers by the patient. It is admirable to know this
data will help medical companies to improve drug therapies and administration since people
differ in how they respond to treatments. Pharmaceutical companies can improve the potency of
different drugs as well by targeting certain strains prevalent in certain ethnic groups or
individuals, which will increase costs in the beginning, but will reduce them in the long run
along with time because the pharmacists know what to target. As long as this information is not
made available to employers (unless they’re offering bona fide wellness programs), it should be
The EEOC tried to implement this into ADA in 1995, but after it was narrowed by the
Supreme Court in 1999, they added GINA in the Genetic Information Nondiscrimination Act of
2008 which protects employees against genetics-based discrimination. Though these laws exist,
it is very easy to bypass them and get access to someone’s data, which can then be used to go
References
http://sciencecases.lib.buffalo.edu/cs/files/snp.pdf
https://www.theguardian.com/technology/2014/jun/30/facebook-emotion-study-breached-ethical-
guidelines-researchers-say
https://www.genome.gov/health/Genomics-and-Medicine
https://www.axios.com/dna-test-results-privacy-genetic-data-sharing-4687b1a0-f527-425c-ac51-
b5288b0c0293.html
https://www.sciencedirect.com/science/article/pii/S2212066116300059
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4798206/
https://core.ac.uk/download/pdf/56355297.pdf
https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-018-0310-5