Tuesday, April 2, 2019

23andMe: Private Data to Pharmaceutical Companies (2018)


In April of 2006, 23andMe was founded by Anne Wojcicki, Linda Avey, and Paul Cusenza. The process in which the company operated is simple, all you, as the customer have to do is spit into small test tube provided by 23andMe and ship it back to the company. Within a few days you will get your results back pertaining your ancestry and genetic makeup. In July of 2018, pharmaceutical giant Glaxo Smith-Kline (GSK) invested $300 million into 23andMe to obtain DNA samples taken by customers of 23andMe to study them and to make potentially groundbreaking discoveries for future medicines. This caused some of 23andMe's customers to get upset over the sharing of their own DNA even if they have initially consented to it. Luckily, for those who didn't want third parties to have their DNA, had an option to back out of the data sharing through 23andMe's website. Although this was a lengthy process that could take upto 30 days, it was a success. According to Megan Allyse, a health policy researcher at the Mayo Clinic who studies emerging genetic technologies, says that “It is no longer enough for companies to promise to make people healthy through the power of big data” and in today's world “we’re just operating now in a much more untrusting environment.” (WIRED) 

International Weekly Journal of Science
 Even though some may be upset with what is happening with their DNA sample, some good things can come out of it, for example in 2015 Forbes reported that one of the first pharmaceutical companies to invest into 23andMe, Genentech for $10 million, found the data to be useful for the development of treatment for Parkinson’s Disease. Once Genentech found this breakthrough data and findings, they invested an additional $50 million into 23andMe.

There are many key and influential stakeholders in this case, first are the CEO's of 23andMe, and GSK, Anne Wojcicki and Emma Walmsley. Along with these two, other include customers of 23andMe's DNA kits and customers of GSK who use their medications and advanced technologies. The other large majority of stakeholders include the media and the general public, since they are the ones who shared the story of how GSK invested $300 million into 23andMe for their customers DNA sample.

When it comes to the ethical theories involved in this case, the first theory to mention is Individualism. This states to maximize profits within the parameters of the law, while prioritizing goals that may be more important at times that just focusing on profits brought into the company. For this case, GSK invested a considerable amount of money into 23andMe which helped them maximize profits by selling potential medicine they produce down the road. GSK uses the DNA samples obtained through their investment to enlarge their databases which contain DNA from people all over the world. Then this can be studied to see whether or not certain illnesses are likely to occur with certain ethnic backgrounds that can be studied for cures.
Another theory is Utilitarianism, the theory of utilitarianism has some district differences that shows the ethical side of 23andMe and GSK. Utilitarianism states to maximize happiness for all those involved, such as the stakeholders. Since there were many stakeholders in this case, it will be easiest to choose the customers of 23andMe and customers of Glaxo Smith-Klines products for example. For 23andMe’s customers, many were outraged that their own DNA was being shared for money to other companies. Although they initially consented to the sharing of the DNA, some were unsure what they were signing off on. After this, the customers found out on 23andMe’s website that you can say you’d no longer like your DNA to be sent to outside sources. Although this is a lengthy process, with paperwork that takes a long time to process, their customers were allowed to say ‘no’ to having their sample shared. In the beginning these people were upset, but the way 23andMe dealt with the conflict between them and the customers, they were happy that they could opt out of this and prevent the sharing of their DNA. For the stakeholders of GSK, they were generally happy with the deal they have made with 23andMe. Their ability to maximize happiness while also profiting from this was big for GSK. Not to mention, GSK now has the power to make newer and more advanced medicines that can be revolutionary for scientific advances in the future. 
The third theory is Kantianism, this theory says to act rationally and not to consider yourself exempt from the rules. It also states to let people make rational decisions for them self. In the case of 23andMe giving private data to large pharmaceutical companies, it enables the companies to make a profit while also acting rationally and not considering themselves exempt from the laws. Since there are rules and laws in place that let the customer opt out of the agreement made with 23andMe it seems right in the mind of both parties that they are acting accordingly. A key element to Kantianism is the idea of maxims, these are actions that achieve a certain purpose. Along with maxims, Kant says to act in goodwill, seeking to do what is right and best because it is right. When this relates to the case in particular, what GSK is doing may be viewed as right because they are making medicine for the sick. The final aspect of Kantianism is the Formula of Humanity, this is stated as acting in “such a way that you treat humanity, whether in your own person of a person of another, always at the same time as an end and never simply as a means” (Kant). In this instance, Glaxo Smith Kline and other pharmaceutical companies are acting rationally while using the DNA collected as an end instead of a means to make more advanced medicine that can be used in the future. 
The ethical theory to be discussed is Virtue Theory. This theory takes into account Aristotle's ethics and the four virtues of character. These four include: courage, fairness, self-control and honesty. In this case in particular, both companies ethically practiced the virtues presented to us by Aristotle in a way included all four virtues. For fairness and self-control these companies were great examples of these virtues since they followed the laws and weren’t selfish in the way they conducted business. While $300 million for DNA samples from 23andMe, may sound like a lot, it does a lot of help in the long run while technology in the medical field becomes more advanced. For honesty, both companies didn’t hide anything from the public, while some people were upset, 23andMe and GSK were honest in the way in which the story got out to the media and the public.

In my opinion, after thoroughly reviewing this case, I believe both parties involved acted in a correct manner. At times, there were small things that 23andMe could’ve done that might’ve helped their case such as letting customers know where their DNA is going from the start and giving them a clear warning before consenting to the data sharing. On the other hand, I applaud 23andMe giving customers the ability to not have their DNA shared even if they have already consented to it. Doing this improves the company's image while also making their customers happy. For the pharmaceutical companies involved, and Glaxo Smith-Kline in particular, I believe what they did in this case was right. They are using all four of the ethical theories properly while also following the rules and regulations set up within the pharmaceutical industry.

An effective action plan for both companies would include for example, giving the media, the public and all the stakeholders involved a ‘warning’ to what the company is doing will make the story easier to understand in the eye of those involved. Along with that, explaining to everyone what the $300 million dollars will go towards will help people better understand what the deal entails since it is a considerably large amount of money. On the other hand both 23andMe, and GSK both handled themselves very properly when making the deal of $300 million for DNA samples for research. 
23andMe's mission statement says that “We are a mission-driven company with big dreams of using data to revolutionize health, wellness and research. We want to improve healthcare. We want to prevent disease. We want to give individuals control over their health data.” (23andMe) This proves how motivated 23andMe is to helping not just their customers of the DNA kits, but people all over the world. With their ability to research DNA and find cures for certain illness or disease, partnering with GSK gives them the ability to help millions of people from all walks of life. In addition to their values and mission statement, marketing can be helpful when making big changes to an organization like this case. Having the company's marketing firm come up with potential ads or commercials to let everyone know where their DNA is going is good for everyone involved. If these ads reach large enough markets, people won’t be irritated to know where their DNA is going. With this, it promotes good ethics overall, since the clients involved know their DNA is helping change the world of medicine in the future.

Shane Kivel


Brodwin, Erin. “DNA-Testing Company 23andMe Has Signed a $300 Million Deal with a Drug Giant.” Business Insider, Business Insider, 25 July 2018. 
George, Sue. “Will Genetics Unlock a New Treatment for Parkinson's?” The Guardian, Guardian News and Media, 28 Feb. 2019. 
“Learn about 23andMe's Research, Its Mission, Business and Core Values.” 23andMe Media Center. 
Martin, Nicole. “How DNA Companies Like Ancestry And 23andMe Are Using Your Genetic Data.” Forbes, Forbes Magazine, 5 Dec. 2018. 
McFadden, Cynthia. “DNA Test Company 23andMe Now Fueling Medical Research.” NBCNews.com, NBCUniversal News Group, 17 Jan. 2019. 
Molteni, Megan. “23andMe's Pharma Deals Have Been the Plan All Along.” Wired, Conde Nast, 6 Aug. 2018. 

No comments:

Post a Comment