23andMe announced that they were going to be selling genetic data that they had collected from their customers to GlaxoSmithKline for 500 million dollars. 23andMe, a DNA analytics company focused on providing people with their ancestry results in exchange for samples of their blood, made a highly controversial move with this decision to sell people’s most intimate genetic data for profit. The bioethics involved in selling genetic data is complicated at best, and there remains a great deal of uncharted territory regarding whether this practice could be considered ethical.
The four core principles of bioethics involve what is known as beneficence, or the intention of doing good, as well as non-malfeasance, which means that researchers endeavor not to hurt the participants in the research trial. The other two parts involve autonomy, which is the participant’s right to choose to be part of the experiment, as well as justice, meaning that the trial will equally benefit the individual. These core values, when applied to situations with DNA companies like 23andMe, represents an ethical conundrum.
For instance, when we look at the concept of beneficence and ask ourselves whether 23andMe is actually benefiting people by selling data, the answer seems to be “no,” because participants do not know how their data is being used. However, one could also argue that selling genetic data to pharma companies could potentially lead to the development of new, disease-curing drugs, in which case the people whose data was sold would be benefited. Although individual people’s data is not valuable on its own, when it is combined with multiple groups’ data, companies have access to the power of big data as well as of individual data sets. This powerful tool—the ability to mine large groups of genetic data—seems beneficial, because it would allow companies to develop products targeting a wider range of people.
The primary source of controversy surrounding the sale of genetic data centers around the issue of autonomy, which is people’s ability to say yes or no regarding how their data is used. Although companies like 23andMe use forms that their customers must sign which say that people agree to give away their data, it does not seem that this is a fully autonomous decision on behalf of consumers. Forms like the ones used by 23andMe list information saying that the data is going to be sold fail to fully inform individuals of their rights in a language that is understandable to them. This lack of knowledge can arguably lead people to signing the form despite knowing that their data will be sold, solely because they need to know information about their genetics—lessening the autonomy of their decision to participate.
Lack of autonomy can also be tied back to whether people actually thoroughly read the terms and conditions on forms provided by companies like 23andMe. Although it seems like people of sane mind are well-qualified to make their own decisions such as signing off on selling their genetic data, it also appears that a wide portion of people were unaware that they were doing such a thing. This raises the question of whether companies have a responsibility for making their terms and conditions clearer and more upfront so that more people are aware that their data is going to be sold.
Yet another component of this debate involves the idea of justice, and whether people are benefiting equally from their data being sold.
Are DNA Companies in the Right?
It seems that the answer to this question is primarily “yes,” as people are more or less receiving the same benefits from their data being sold. If we examine the practice of selling genetic data from a bio-ethical perspective, it looks as though companies such as 23andMe are in the ethical right—they stay mostly within the lines of beneficence, non-maleficence, autonomy, and justice. Although one could argue that certain aspects of their undertaking remain unethical, especially concerning their lack of clarity in their terms and conditions, the overall practice of selling genetic data remains wholly ethic.