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Lecture 15

NATS 1775 Lecture 15: lect 15 Mandatory genetic testing.docx


Department
Natural Science
Course Code
NATS 1775
Professor
Vera Pavri
Lecture
15

Page:
of 5
Mandatory genetic testing,
A country requiring citizens to undergo a genetic test so the test is no longer voluntary, it is
something you have to do. 2nd idea is related to who should have access to these tests, such as
insurance companies and general employers.
If an individual were to undergo genetic test and they were to find out that these tests were
positive, that they were susceptible to a particular genetic disease, consider both positive
reaction someone might have of this news and a negative reaction.
Positive response: early warnings, opportunity to change diet, lifestyle and make sure you don’t
get that particular disease. Some would feel devastation, anxiety, depression. For a lot of people
hearing this news is going to have a very negative, psychological as well as emotional impact.
Part of the reason for so much negativity is not just with the news or test results, it is have to do
with a very common mistake that many people make in this whole area of assessing test
results.
Susceptibility means likelihood. Genetic tests say you are likely or highly likely to get a genetic
disease. A lot of genetic test can only test for susceptibility; they are not going to tell you that
you are 100% going to get something. What is the big mistake that people make? People
confuse susceptibility with inevitability. They think that the news they get is a 100% confirmation
that they will get this kind of disease. This is why the negative feeling come into place such as
hopelessness.
If these tests were mandatory that an employer or insurance company require you to show the
test results before you insurance or job.
Insurance company: are very big players in this particular game, they ask for test results
because they don’t want to insure you if you are at risk. Insurance companies make their money
based on risk assessment, they need to assess who you are and determine what insurance to
give you, they need to know all about you. For insurance companies, they have big stake in
accessing these tests, it would not be fair for not having them access these tests because so
much of their determination based on this concept of risk. If you are an individual whose test
results are clean, that’s great but if you are an individual and you test again positive for
susceptibility for a particular genetic disease then probably the negative consequences
outweigh the positive because 2 things the insurance company can do to you if they have
access to these results is that they could change rates, they can charge you higher rates , they
can refuse you access to insurance altogether. Accessibility is going to become a problem.
Employers: Employers ask you to undergo a genetic test again to see your propensity to get
diseases. Why would they want access to your information? For a lot of employers it’s about
work and productivity, because if worker gets sick on the job the employer would have to pay
health insurance costs. A company wants to know your test results because if they think there’s
a chance for you to get a disease, this is going to harm work and productivity and this will cost
them more money in terms of health insurance. Your job is going to expose you to work place
hazards, then all of a sudden the nature of the job should be under consideration that who
should get the job because it’s all about the idea of risk.
If you are an individual whose outcome is negative good for you, however you are denied a job
on the basis of these genetic test results, for many of us it’s an unfair thing. This is going to be
genetic discrimination.
Genetic discrimination is related to gender and racial discrimination. To not receive a job all
because of all of this is genetic discrimination. Most of us don’t realize that this genetic
discrimination is happening for a long time. In Canada there has been multiple examples in
terms of insurance discrimination. The legislation was passed by US attempting to stop this is
the Genetic Information Nondiscrimination Act (GINA). The GINA act was passed and it was
passed in large part because of many examples. Denied jobs and access to insurance due to
these results. They are denying you job or insurance not on inevitability but susceptibility,
likelihood. Denying something based on likelihood is an unfair prospect for many.
Government would be quite in favour of mandatory genetic test because it would allow any kind
of government to accessing health care. If you are a country who now has access to genetic
test for entire population, the one thing you can do is to track research, track trends, what kind
of diseases are impacting the greater segment of populations. Where should the money go
based on these trends. This would be a key factor for a govt. Impact of mandatory genetic
testing on a country like CANADA which has a universal healthcare based on a country such as
US which doesn’t.
In Canada we all have access to medical care if we needed no matter how rich or how poor we
are, but in US it’s different. For US if they were to include mandatory genetic test for all of its
citizens, the social economic group that would benefit is the poor. They would not have the
ability to afford these tests but if these tests were offered to everyone, poor would know their
history and have more access to their medical history than ever before. Although these citizens
have access to tests results but they will not have access to meditation, treatments,
prescriptions etc.
What will the pharmaceutical industry do if they get access to genetic test result of a population?
Supply and demand. They will know what trends are happening and what popular diseases are
there. If they track trends, they will going to invest in those diseases that are trendy. Those
impacting the larger segments of the diseases because that’s the area they will get their money
back. Conversely if all the money goes to popular diseases, those with rare diseases will be
impacted. Pharmaceutical industries will benefit from Preventative medicines. These are not
drugs or solutions that promise to work or cure anybody with the disease but offer a great area
of hope.
Researchers and doctors
Doctors would know about the person they are treating. It is just another layer of patient
information to require proper diagnosis to them. Researchers and scientists will have greater
data pool to work with. They would have more data or of entire population and hence they could
spot trends and could see therefore what diseases are popular than others. This can tune into
what areas they should look into for their research.
Military use of this data can be in terms of both its citizens and enemies. Enlisting recruits, trying
to find super soldier that is desired. A military could get genetic test results of its enemy
population, biological and chemical warfare, they could create weapons designed to hit a target
population again based on genetic propensity. Staying one step ahead of enemy.
If these genetic test results were done on a wide scale population, this information would be
stored in databases. Secured place.
Accuracy: no matter how accurate the test is even 99.99% there will always be those test
results that come up wrong. 2 incorrect results that might happen are false positive and false
negative. With false positive someone says you have something where as you don’t and with
false negative someone says you don’t have something when you do. Impact of incorrect
medical testing in terms of size and scale. Even if there is 0.001% chance of these test results
being inaccurate that 0.001% is not going to be few people if you are talking about millions
people being testing.
Genetic testing of pregnant women
Testing is done on the fetus to determine whether or not the fetus is susceptible to a genetic trait
or disease. If a woman founds out the test is positive, she might have 3 options
1. To have the child give up for adoption
2. Decide to keep the child, or
3. Decide to terminate the pregnancy based on these test results.
If a woman decides to terminate pregnancy based on these results, ability and willingness to do
so comes into place. For e.g. some individuals might find themselves not economically capable
of taking care of a child, perhaps economic costs are high. Sometimes feel that this is not right
time. Social and psychological requirements as well. Many individuals think that they are not
psychologically or emotionally prepared to endeavor in situation that require time. Quality life of
child, maybe decision be made on basis of child. They don’t want the suffering of their child.
Religion plays a huge role in decision making process of many individuals. Decisions made by
family unit, they don’t agree.
50% would think that more information I have, the better I am. If we could have access to more
information, it could help us make important decision. Other 50% don’t want to have access to
this information, that information in decision making becomes paralyzing, it becomes about in
ability to make a decision. Fear of making a wrong decision.