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Running Head: Assignment 2 1

1) Scientists face ethical issues when conducting research using SNPs, such as balancing the need to share findings to advance research while protecting patient privacy and preventing discrimination. 2) While laws like GINA aim to prevent discrimination based on genetic information, it is still relatively easy to identify individuals from genetic data, allowing their information to be accessible and used against them. 3) The EEOC aims to ensure equal opportunity, but genetic information accessed without consent or used retrospectively could allow discrimination in hiring or insurance in violation of EEOC guidelines. Scientists must take care to sufficiently de-identify genetic data when sharing it to prevent these harmful outcomes.

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69 views

Running Head: Assignment 2 1

1) Scientists face ethical issues when conducting research using SNPs, such as balancing the need to share findings to advance research while protecting patient privacy and preventing discrimination. 2) While laws like GINA aim to prevent discrimination based on genetic information, it is still relatively easy to identify individuals from genetic data, allowing their information to be accessible and used against them. 3) The EEOC aims to ensure equal opportunity, but genetic information accessed without consent or used retrospectively could allow discrimination in hiring or insurance in violation of EEOC guidelines. Scientists must take care to sufficiently de-identify genetic data when sharing it to prevent these harmful outcomes.

Uploaded by

sabihuddin
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© © All Rights Reserved
We take content rights seriously. If you suspect this is your content, claim it here.
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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

happens, new frontiers of science and cures cannot be discovered.


Running Head: Assignment 2 3

Ethical Issues Concerning Scientists:

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,

while sites like 23andMe and Ancestry.com require subpoenas to do so.

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

see how emotions travel on the Web.

3) Repercussions to patients/ subjects based on findings and retrospective consent – As with

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

fine, but if it is, it will most probably violate EEOC rules.

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

against EEOC rules and regulations.


Running Head: Assignment 2 7

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

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