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Privacy of DNA Testing


Who should have access to DNA testing information? How should it be used? What are the guidelines for using DNA testing information?

UN Sustainability Goal:

Goal 16: Peace, Justice, and Strong Institutions: This project relates to how just it is to use DNA tests and who has the right to the test which I think relates to the “justice” portion of the sustainability goal.

The rise of at-home DNA testing kits, such as 23andMe, has brought to light new privacy concerns

DNA testing has become much more prevalent and especially living in the bay area there is always news about the use of DNA testing kits. Recently, there have been controversies about who should have access to the data acquired from these kits such as whether law enforcement should be able to view the data or pharmaceutical companies. I plan to explore the various sides to the issue of who should have access to this data along with the pros and cons of each side.

How DNA testing kits work:

  • The kits look for genetic variations called single nucleotide polymorphisms which means companies look for the DNA chemical blocks that vary between people – shows what is unique to your genome
  • Mitochondrial DNA testing is offered by some companies which allow a person to find their maternal haplogroup since we all inherit our mitochondria from our mothers. Men can learn about their paternal line through their Y-chromosome.

Ethical questions:

Who has the rights to the DNA test?
Is it ethical to share DNA testing results?
Is it ethical to use DNA results against the person – for example in a crime?
Is it ethical to share family history with a person from their DNA test (for example if they are adopted)?

Currently who has access other than the consumer?

  • Pharmaceutical companies: companies sell DNA testing information to pharma companies for profit
  • Law enforcement: FBI and other agencies have access to a database of information to assist in solving crimes

The Issue

  • It’s unclear whether online genealogy site users know their DNA is available to a criminal investigator
  • People may not be aware of what their data could be used for
  • The question of informed consent — how specific the customer’s consent needs to be
  • Commercial DNA tests are not covered by federal privacy rules or HIPAA – this industry is unregulated
Bioethical PrincipleApplication
AutonomyConsumers decide whether or not they want a DNA test
BeneficenceIf the DNA test allows them to learn more about their family or understand a medical issue it can be beneficial/good for the patient’s well-being. Also if DNA tests are used to solve brutal crimes it is benefitting the public and the well-being of all.
Non-MaleficenceIf the DNA test is helping the consumer/patient it follows this principle; however, if the DNA test exposes data to the consumer that they were unprepared to see it could cause psychological harm.
JusticeIf patient’s data is sold to pharmaceutical companies but patients are not compensated for their own data that is a violation of the justice principle and fairness in general.
Informed ConsentWhether consumers truly understand what their data can be used for causes a question of informed consent. If they are unaware of all the use cases for their data, they have not fully given consent thereby violating informed consent.

General access (researchers, law enforcement, pharmaceutical companies, etc.) having access versus only patient access to DNA information

ProsCons

Large amounts of data have been helpful for identifying the genetic foundations of diseases that have eluded genetic analyses on smaller numbers of people, particularly psychiatric conditions. 23andMe user data has recently been leveraged to investigate the genetics of attention-deficit/hyperactivity disorder (ADHD), neuroticism, and depression
Patients are generally unaware of all the people who have access to their data

Police have used the DNA databases to track down suspects of brutal crimes
Informed consent is being violated in many cases
Pharmaceutical companies could be able to create more effective drugs due to the large amount of customer data availableThere is a lack of privacy laws surrounding customer’s DNA testing data
Informational video about DNA testing privacy conerns

Conclusion:

Thus, looking at all the evidence and ethical questions surrounding the rapidly developing DNA testing technology, there are clearly important privacy concerns. At the core of the issue is whether consumers truly give full informed consent for the DNA to be used. Additionally, there could be familial relation issues such as discovering a child is adopted without being prepared which leads to the question of whether these companies have a right to release that type of data. However, on the other side of the issue, law enforcement has been able to use this valuable DNA data to track down suspects of a deadly crime and pharmaceutical companies have been able to use the data to develop more accurate medicines. As a call to action, I believe that companies should be more careful about truly informing the consumer and ensuring that they are completing the process of informed consent. Furthermore, consumers need to be careful of the fine print when signing up for DNA testing to create more awareness. Also, I think it violates the principle of justice for solely the DNA companies to benefit financially from selling customer’s DNA. But, I also believe that there have been important benefits to having a large database of DNA information, so consumers should keep that in mind when deciding about whether or not they consent. I believe there needs to be a balance found between these two sides to the issue.

My summary/overview of the topic

Survey – please enter your opinions!

https://PollEv.com/surveys/ivxNa3T4hK7wv7wUSfP7I/web

Sources:

https://docs.google.com/document/d/1yp8ufshBMHQOX-_VL_KAEAagA_Ld3aKwzx_JbNxuH8w/edit?usp=sharing

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COMMENTS: 9
  1. April 26, 2019 by Erica Reply

    Hi Aneesha! I loved the pros and cons diagram you had in relation to general access questions. It was very well developed and it showed that you had a clear grasp of the concept and were able to look from the perspectives of many. I wonder if you could have applied that/elaborated a little bit more when talking about the bioethical principles from multiple perspectives? For example, I think that the principle of Justice can be seen from more than just the patients perspective, perhaps the companies perspective? I would love to know what you think! Great job!

    • April 26, 2019 by Aneesha.Kumar Reply

      Hi Erica, thank you! I think your point is great. From the company’s perspective, selling patient’s DNA is a big revenue for them and thus they are able to make these DNA kits affordable. However, I believe that patients have a right to know this and make their decision in order for this to be truly fair/just. I think the principles of autonomy, beneficence, non-maleficence, and consent apply more to the patient because it is their medical data that is being discussed.

  2. April 26, 2019 by Julia Cohon Reply

    Hi Aneesha! I think that your topic is super interesting! I am adopted and have been very curious about DNA kits, testing, and privacy issues because I have heard a lot of controversial things about it. I completely agree with your perspective that there needs to be a balance. What do you think companies would be willing to comply with? Is there a decrease in the amount of people who are ordering DNA kits?

    • April 29, 2019 by Aneesha.Kumar Reply

      Hi Julia! I am unsure of what companies would be willing to comply with because selling genetic information is a major source of financial gain, but I think that a good balance would be stating what the customer’s DNA is going to be used for clearly. Then, it is up the customer to make a decision. I think there may be a decrease in the number of people who order DNA kits but people would be aware of what their data is used for. Also, I don’t think that companies are always using the data in a negative manner – there have been many positive outcomes from collecting a large number of DNA samples.

  3. April 26, 2019 by Lenox.Hill Reply

    I thought that this was a very interesting project. One reason I felt so connected to this is because I am a user of these services myself.

  4. April 29, 2019 by Aminah.Asghar Reply

    Hi,
    Your project is so interesting, especially now with the trend of DNA testing. Also, I found your organization very helpful and easy to understand!

  5. April 30, 2019 by Morgan.Reece Reply

    Hi Aneesha, I was super excited when I saw your project because I’ve always wanted to do the 23andme or some other kind of DNA test, but have always been worried that my DNA could end up anywhere. After learning that there is no law preventing these companies from sharing the information, my fears have been confirmed. However, I also appreciate that you kept an objective perspective while looking at the issue and seeing the benefits that sharing DNA information could have for health and criminal justice but also the misfortunes if it were to land in the wring hands.

  6. April 30, 2019 by Maya Reply

    Hi Aneesha! I thought that your project was super interesting. I took a 23 and Me test a couple of months ago and I didn’t think about all the variables. I never thought about what would happen in there was a breach or if my information was sold. I thought it was important that you said that currently there aren’t any restrictions on companies. Your project flowed really nicely and I thought that the charts were super helpful.

  7. May 01, 2019 by Leo.Abelson Reply

    Hi Aneesha, your project was very interesting. Before reading this presentation I hadn’t even thought that DNA testing creates privacy concerns. The large amount of background information you provided helped me understand this problem.

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