Ethical and social challenges of
personalized medicine.
We will soon be able to sequence a person’s genome for $1,000. Please explain the benefits
and risks of using whole genome sequencing (WGS) to screen infants in the population-based
newborn screening program. Please consider at least two of the following questions in your
answer. How would you determine which types of genomic information to communicate back
to families? Imagine that you are the director of a newborn screening program. What are the
main ethical questions that should be considered before introducing WGS in the newborn
screening program? What are the roles of parents and advocates in determining how and
when to use WGS? How would your answer change if we limited the use of WGS to infants who
are severely ill without a clear diagnosis?
In marking your peer assessment, assign either a 0, 5, or 10 depending on the completeness of
the answer. If no answer, assign a score of 0. Assign a score of 5 for a good effort and 10 if the
answer fits all criteria below.
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Clear explanation of the benefits and risks of using WGS in the NBS program.

An answer to at least two of the questions.
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Reasons for the answers provided
Benefits of whole genome sequencing1,2:
 Whole genome sequencing can lead us to know the everything about genome including
coding and non-coding regions thus it can create a better opportunity to plan a
personalized medicine option for future use.
 As whole genome sequencing reveals everything about our genome so we can easily
predict the disease that may harm us in near future.
 Previously not-known genes may be identified as contributing to a disease state.
Traditional genetic testing looks only at the common “troublemaker” genes.
 Things that can lead changes our base pairs like environmental or lifestyle factors can be
identified and then be moderated.
Risks of whole genome sequencing:
 Whole genome sequencing reveals lots of data. Dealing with such huge amount data
could be challenging.
 In clinical context, it is still difficult to interpret huge data to reach an exact point where
a patient is at risk or not.
 Whole genome sequencing is still time consuming.
 Whole genome sequencing still costs much.
 An individual’s genome may contain information that they do not want to know. For
instance, a patient has genome sequencing performed to determine the most effective
treatment plan for high cholesterol. In the process, researcher discovers an unrelated
allele that assures terminal disease with no effective treatment.
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Ethical concerns of whole genome sequencing:
How data that are generated from whole genome sequencing is saved is a question
debate.
If a rare gene is found because of that individual is highly resistant to a certain disease
then who hold the right to use this gene.
Whether insurance company apply insurance based the data from whole genome
sequencing.
Future use of whole genome sequencing data.
Determining factors while communicating family about data from WGS:
 Use precise words that have an exact meaning.
 Just because someone has a gene does not mean that personnel are going to develop
those diseases for sure.
 Use information such a way so that nobody can use a gene for court defense. For
instance, because of some genes people are more addicted to alcohol than others. If
that person commits a crime because of alcohol addiction then using the existence of
genes is a concern of ethics.
01. http://knowgenetics.org/whole-genome-sequencing/
02. http://www.nature.com/ejhg/journal/v21/n6/full/ejhg201346a.html
03.