Chapter 6 Case Study: The Right to One’s Own DNA: Natural or Socially Constructed?
In 2007, 23andMe began offering a service whereby one sends the company saliva and then the company sends back a genetic profile that could be interesting for purposes of learning about one’s ancestry or even for learning about the risk of certain heritable diseases. Users paid for the service, but, really, what they gave 23andME was arguably more valuable than the money they paid or what they received back. 23andMe now has well over 5 million genetic profiles from the general population. This massive amount of data can be used for all sorts of research purposes. One of the world’s leading drug manufacturers, GlaxoSmithKline has invest $300 million into 23andMe so as to gain access to the genetic information. Some users of 23andMe may be surprised to learn that they have already consented to allowing their data to be used even by third parties such as GSK and Pfizer. The process by which 23andMe obtains consent is a typical online privacy and terms agreement that most people are accustomed to simply clicking “Agree.” The drug companies that have paid for access to the genetic information are planning on using it for very valuable research that could lead to treatments for many disorders, Alzheimer’s disease being perhaps the most visible. Privacy advocates worry that the process circumvents the typical medical research process of obtaining informed consent and charge that 23andMe was created precisely to get such information without the rules governing collection of data during medical treatment.
How would the right to one’s own genetic information be viewed upon by a natural rights theorist? Would a natural rights theorist think there is such a right or not? Consider, would the right to one’s own genetic information fall under the fundamental right of self-ownership? Or could one argue that the genetic information does not exist as information to be used until “mixed” with sophisticated technology? How would a social constructivist about rights compare the benefits of such data for finding cures for Alzheimer’s disease versus individual rights to their own genetic information?
Case study by Robert Reed