The23andMe and Public Good
The company that I chose is The23andMe. I Googled companies that use big data for public good and there was an article written about their public good initiatives. The companies main goal is to, “help people access, understand and benefit from the human genome.” They sell at home genetic testing kits, which sell for about $200 a piece. The individual benefit of these tests is to gain an understanding of your health, traits and ancestry, which can be beneficial in understanding whether you are a carrier for diseases like cystic fibrosis, sickle cell, etc. These results can also be beneficial in understanding diet and exercise, which can vary depending upon the individual. The public good aspect of the company is that with the consumers consent they donate the genetic information to research. Some examples of this include drug companies that are working to find cures to Crohn’s and Parkinson’s disease. Additionally they use the information to recruit patients for research trials who may perfectly reach the guidelines for the trial. This data is coming from people’s personal tests. The company is for profit, and was founded in 2006. The company is well established and has over 1 million genotyped customers of which 80% have opted to participate in research. Probably 75% of their company is dedicated to the public good as they donate all the consented information they obtain to research.
What I also really liked about their company is that they have an accompanying app that can help individuals manage their diet and exercise, track their heart rate, and contribute research studies on the go. This just amplifies the amount of data they can obtain from one person and helps individuals know what to do with their results. However, I think the nature of this company comes with a lot of ethical concerns especially with the addition of the app. Everyone can benefit from increased genetic research; however, individuals who choose to share their data, share A LOT of data with any number of third parties. I’m not sure I would feel comfortable sharing all of my data. Ironically one of their core values is, “We believe that your genetic information should be controlled by you,” but how much is really controlled by the individual if the individual chooses to share their information with any number of third parties? On the other hand, if individuals choose not to contribute to research then the public good aspect of the company ceases to exist.
Next Post
I have heard about The23AndMe before and it sounded so cool! However, I liked your point about their statement “We believe that your genetic information should be controlled by you.” Is your genetic information really being autonomously controlled if you’re giving out info to third party companies? But, I am also in agreement with the fact that if nobody is surrendering their genetic information then the company would seize to exist. I guess the individual has to weigh the ultimate benefit and decide if it’s worth the risk.
This is really interesting, expecially the vague ethics surround the idea of their app. How much of the research that they collect is open and available to the public? Can they even open it up to the publich since its soo private? Is there any chance for the data to be compromised because of the app and human error with use? Cool company though. Im sure for those who are doing family planning, knowing your genetic make up could be priceless!
I was really interested in your post because I’ve done a fair amount of research into genome mapping but I knew very little about The23andMe. While I completely understand the benefits of doing this (I’ve watched Grey’s Anatomy – knowing if you’re going to get Alzheimer’s would completely change your life). However, in terms of data, I wonder what the rights of the individual would be. I know that The23andMe keeps and stores all the data on each person’s chromosomes but is it fair for them to sell it to other parties, like say pharmaceutical companies? They could completely take advantage of human’s ingrained tendency to be a bit of a hypochondriac.
That last point you make is a very good one. This company is walking a very fine line if individuals choose not to contribute to research. I can see how there are ethical concerns with the app. I personally would not be comfortable in sharing all that data.
Awesome job! The23andme is a great example of public good. In a situation like this one, I completely agree with Emily when saying that individual has to weigh the ultimate benefit and decide if it’s worth the risk. Even though there are potential benefits, I do not believe I would want to share my personal data because there are so many third party companies that would have access to it.