Genetic Testing: Issues on Privacy and Social Injustice

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     A new age of genetic improvement allow us to decode our own human genome with less than a thousand dollars. It solves the problem for new efficient medicine that could cure rare illnesses and sometimes cancer. Biotech companies like 23andMe developed an odds calculator to track down an individual’s possibility to contact a certain disease. Tracing your ancestors could be just as easy. But, as this growing industry took a bigger step into the world, questions started to rise about the reliability and the privacy of personal DNA results. 

Recent discovery: 

Do you know that now scientists could eliminate some of the mutations in an embryo’s DNA? Don’t be anxious or boisterous about this news. We’re no in the stage to increase the intelligence, height, or the body structure of the baby prior from birth. But, will it happen in the distant future?   

Screen Shot 2012-05-09 at 9.39.41 PM
Screen Shot 2012-05-09 at 9.39.41 PM
​Figure 1: A scientist was extracting a portion of the embryo to remove a part of the mutation.

Personalized medicine?

Thesis: The price of personalized medicine is expensive and is most likely to be used within the upper society. It is not realistic for the lower class to be able to afford it daily and it is only available for people who have a mutation in an actionable gene. 

     The value to develop personalized medicine is a new breakthrough in inventing new ways to cure. But, the current price for these medicine is too expensive and could most likely be used in the upper society rather than the lower class who could not afford about $294,000 per year (about $800 per day). Then, it will evolve into a social injustice that was primarily made to help the whole society. Even if the price goes down in the future because of the invention of new advance technologies, personalized medicine are only available to patients who have an actionable gene. Unlike all prescriptions from clinics that could treat people of all classes and almost all people, personalized medicine’s medical power could only be delivered to a selected group.  

Trustworthy results?

Thesis: The results of personal health risks should not varies from different companies, the results should be definite in order to prevent confusion and panic from testers. 

Different biotech companies have different methods in collecting DNA samples. Some companies, like 23andMe use saliva samples while deCode Me use cheek cell samples to sequence an individual’s DNA. But, all of these variety of different samples leads to results that varies from company to company. If the results depended on only a part of the whole DNA then the odds calculator will prevent the tester from contacting a certain disease but it could also create unnecessary panic and bewilderment of the testers if the company did not explain how to read the statistics in the right way. 

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Screen Shot 2012-05-09 at 9.23.33 PM
​Figure 2: Biotech companies show their testers some of their genes based on their blood or saliva sample. 
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Screen Shot 2012-05-13 at 7.23.35 PM
​Figure 3: Based on genes provided by the DNA sample of an individual, the odds calculator can show the possibility of an individual to contact a certain disease. 

The odds calculator is a great tool to help prevent and decrease illness. But, the biotech company also need to give the testers both the possibility and the definite facts about their health. Also, these biotech companies need to create a manuel to guide their testers to read their results properly so they will not mistakenly believed that all of the results shown on the odds calculator is true. Personalized medicine need to be created so it could target both the patients with actionable and non-actionable mutation genes or the cost needs to be lower so it would be affordable to all groups of people.

Personal Research: (Personalized medicine/genetic testing)

Based on the survey that I had conducted, 25% of the people said that personalized medicines are necessary in our society based on their expensive cost the rate of cure for all groups of people. 75% of the people said that the society need personalized medicine but it is not ready to be accepted as a major type of medicine in our society, yet. 

Also, 25% of the people are not interested in taking genetic tests, 25% of the people are interested in taking the tests and 50% of the people hesitated to crack their DNA.   

Click here to fill out a survey! 

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