Computers and the internet continue to revolutionize the ways we collect and distribute information. Many privacy concerns have accompanied these technological advancements. Earlier this year, in a New York Times article, some of these privacy concerns were made readily apparent. Using supposedly anonymous DNA sequences from a publicly available database, a scientist was able to identify the names behind five of those samples. The participants in this database had voluntarily participated, and had in fact signed a form saying that the researchers could not guarantee their privacy. Even so, there are several potential legal concerns that this experiment illuminated.
First, third party family members’ privacy could be violated, even if they had not voluntarily participated in in a genetic database. In the above demonstration, the scientist was not only able to identify the name behind the DNA sequence, he was also able to identify the family members of the participant using online genealogical databases. Given that science has identified genetic risk factors that can potentially lead to health problems, these family members might not want to be identified. If a child of the participant was identified as having a 50% or 100% chance of inheriting some genetic risk factor they might fear being denied insurance coverage or being subjected to discriminatory hiring practices. Consider, for example, someone sharing their home phone number without the permission of other household occupants. If the house starts getting lots of calls from telemarketers, it could be an unpleasant experience for everyone, not just the person who gave out the phone number. This is a relatively benign example, but it demonstrates how volunteering information that is common to both parties could lead to unwanted consequences for the group that has unwittingly been conscripted. Is someone allowed to voluntarily donate their DNA to science, when it could potentially cause problems for their family members?
This leads to a second question, how much of our DNA do we actually own, and what bundle of property rights does this ownership grant? There was a recent debate about whether a company could patent individual genes associated with breast cancer. See Ass’n for Molecular Pathology v. Myriad Genetics, Inc., 133 S.Ct. 2107 (holding that isolated naturally occurring DNA is not patentable, but synthetically occurring complimentary DNA can be patented). The Supreme Court seems to be correct that a company cannot “invent” a gene, but even if they can’t, that doesn’t necessarily say whether or not individuals own their DNA. Humans share about 99% of their DNA with chimpanzees as well as bonobos. They share an even higher percentage with each other, and identical twins share nearly identical DNA. Further, DNA has never been truly under an individual’s exclusive control. We leave our genetic material everywhere we go as we shed hundreds of thousands of skin cells every day. If we share so much of our DNA with others (indeed sometimes almost all of it), and it is so readily available for sample collection, how much of it are we capable of protecting for privacy reasons? Finally, if we don’t own our genes or DNA, what are the implications? Do we own larger parts of our bodies which are merely expressions of these genes? Right now, I think I am in control of my body, and I would like to keep it that way. However, as technology continues to progress, these are questions that our society and government will have to resolve.