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Big Data, Public Good, and the Ethics in Between

Big Data, Public Good, and the Ethics in Between

I chose to do some research on the company The23andMe after Googling companies that use big data for public good, and found an article written about their public good initiatives. The company’s 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 consumer’s 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 meet all the guidelines for the trial. This data is coming from people’s personal tests. The company is for profit, and was founded in 2006. It 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 individuals can use to complete surveys and interact with research 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 of their DNA test. 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?

Unfortunately this issue is not as simple as it may seem. Sharing this data may be invasive, but if no one shared their data then the public good aspect of the company would completely dissolve. We all benefit from the research being done by The23andMe and maybe the benefits outweigh the negatives. In the graphic novella Terms of Service by: Michael Keller and Josh Neufeld, they discuss the debut of Gmail. Google was one of the first companies to start using people’s data to sell to third parties, and the public was really upset and complained about how it was an invasion of privacy. However, it’s safe to say that almost a decade later ideas about privacy have vastly changed. We post our workouts, our locations, our job, our date of birth, and more information freely on the Internet where anyone can access it everyday, and I don’t know anyone who worries about what Google is doing with the content of their emails. I sometimes wonder as the Internet becomes more ingrained in our daily lives if ideas about privacy will change even more. I don’t feel comfortable with anyone having access to data about my health and genetics, but I think it’s very possible that in the next ten years it will be normal to put health information out on the web. It’s already happening to a certain extent. However, if ideas about privacy continue to sway in this direction I wonder what kind of conversations we will be having about ethics then.

In addition to these ethical concerns about the privacy of personal information, I also looked up their privacy policy and found even more concerning information. Terms and conditions and privacy policies often contain a lot of fine print, and I think it’s fair to assume that most people do not read every line. One of the first points of consent is the, “storing and processing of your personal information by the US and other countries.” The statement says they do their best to protect your data but other countries may have different laws concerning privacy. Given the sensitive nature of the information given, it’s concerning to think people in other countries could have access to social security numbers and people’s specific genetic makeup. Additionally your DNA will be stored with the US government and should someone ever commit a crime the government will have that DNA to reference. Another thing I found concerning was that even if you do not sign the consent form, The23andMe can still use your data. They use it anonymously and usually in aggregate form; nevertheless, it’s still being used and collected by researchers.

Privacy is not the only negative aspect of collecting personal health and genetic data. Right now the issue is that there is so much data it can be hard to sort and make sense of it all; however, software is getting more complex and better able to deal with the data. Significantly software is dealing with this data instead of people. Software is a lot less forgiving than people. For example, currently health data is collected by The23andMe and other self-tracking applications and sold to third-parties. These third parties are never openly identified, but we can assume most of these third parties are somehow interested in selling products to people based on their interests. However, if these applications begin selling their data to health insurance companies, it’s possible this data could start affecting insurance rates. For example, doctors recommend that a female my age get 30 minutes of moderate exercise 3-4 times a week. Additionally doctors recommend that I eat vegetables and lean meats. If health insurance companies could somehow access my exercise and diet data, they could potentially charge me a higher rate if I didn’t follow the doctor’s recommendations. The software that tracks this data would not take into consideration finals week when I don’t have time to work out or eat healthy meals, my health insurance premium would just automatically be raised and this is scary to think about.

On the other hand, I think so much research can be done with big data and I think The23andMe is a good example of just how much can be done with it. It says on their website that what they have completed in a few years would have taken decades using the traditional methods of data collection. I don’t think that companies should be required to use their data for research; however, I definitely think the government should encourage companies to do so by providing a tax break for companies who do so. Too often companies use big data to sell to third parties in order to market products to individuals. Our economy needs people to buy things in order for it to continue to thrive; however, there’s no reason why companies couldn’t donate data for research as well.

In conclusion, I think big data is a big topic and I think we need and should start thinking about the way it can be used. Currently big business is using data to their advantage, but so much more can be done with this data for the public good. I also think it’s important to think about the ethics of big data and pay attention to privacy policies. Too often we don’t worry about who is collecting our data and for what reason, but we should because it matters. We need to think about what information, if any, we want private and keep it that way. This is going to become even more important if employers, schools and/or insurance companies start using our data as part of their qualifications.



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