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.
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.
|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
- 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
|Autonomy||Consumers decide whether or not they want a DNA test|
|Beneficence||If 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-Maleficence||If 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.|
|Justice||If 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 Consent||Whether 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
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 available||There is a lack of privacy laws surrounding customer’s DNA testing data|
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.
Survey – please enter your opinions!