DNAge of Consent
By Emily Chen, Data Science and Biochemistry, 2023
The distribution of a revolutionary piece of DNA testing technology has changed the world of ethics and information gathering. A genomics company, 23andMe, commercialized a device that reveals an individual’s ancestry when provided with only a sample of saliva. If only things stayed this simple…
23andMe began with the goal of providing genetic information to as many people as possible by supplying its devices at reduced rates. However, in a world that prizes monetary success, this company moved closer and closer to the line dividing privacy and security. The scientific community, specifically the sector that involves human testing, revolves around informed consent; a volunteer agrees to treatment with knowledge of procedural details, whether it is in the instance of giving a urine sample, or undergoing surgery.
However, in a world that prizes monetary success, 23andMe moved closer and closer to the line dividing privacy and security.
In May 2012, 23andMe announced that it obtained a patent for a method of determining predisposition to Parkinson’s disease. Instead of celebration, this achievement increased the tensions surrounding clinical research using such large data bases. The question arose: did every person participating in this experiment give informed consent? According to customers on the company’s blog, the answer was no. Participants repeatedly expressed their increasing concern with the company, specifically in regard to data privacy. They exclaimed how their decision would have been affected if they had known how their data was going to be used. Other participants questioned the ethics of such an ordeal. Data collection is a common step in research, but, in this case, the public believed it was not notified in an efficient nor effective way. When a corporate misunderstanding occurs, it is not necessarily on purpose. However, some parts of the public still have reservations about 23andMe.
Data collection is a common step in research, but, in this case, the public believed it was not notified in an efficient nor effective way.
With its status as a for-profit institution, there is pressure on 23andMe to produce profitable research discoveries. Thus, this company could be inclined to take certain steps to bring in revenue despite the ethical consequences. In contrast, nonprofit institutions receive the majority of their funding from the government. Technically, when someone submits her DNA to 23andMe, the company reserves the right to utilize the subject’s personal information to tailor advertisements for products and services. The debate unfolds when participants in the genetic research aspect of this company question if their knowledge of these procedures serves as informed consent to 23andMe. There is a fine line between privacy and health security, and some people believe 23andMe remains dangerously close.
DOI: 10.1016/j.tibtech.2012.11.007