Guest Post: Michele Loi
Should individuals be permitted to access their own genetic data without the mediation of a medical professional?
In ‘Direct to Consumer Genetic Testing and the Libertarian Right to Test‘, I argued that they should, provided that they bear the associated costs. I provided a libertarian justification for this position, one grounded in a person’s right to self-ownership. Individuals are the sole legitimate moral owners of the DNA inside their bodies, just as they are the sole legitimate owners of their eyes and kidneys.
Libertarian moral ownership entails that individuals have a special authority with regard to uses of their body parts irrespective of the benefits of such ownership, measured in terms of how they contribute to advance the autonomy or well being of every person. The libertarian moral authority each person has over his/her DNA arises simply from being the sole owners of certain DNA molecules that happen to be parts of one’s body. If people have such libertarian rights to the DNA inside their bodies then they have libertarian rights to test it and analyse it, irrespective of the clinical or personal utility of doing so. This makes my libertarian argument for the right to test one’s DNA independent from already known (autonomy or utility-based arguments) for an alleged “right to know”. People have the right to use their genome in any way they please, as long as others are not harmed (more precisely: as long as other people’s rights against harm are respected). I do not claim to have discovered anything new: a libertarian right to test has been invoked informally (and arguably, implicitly), without philosophical analysis.
My argument in that paper has elicited a critical response by Wendy Bonython and Bruce Arnold, who claim that the alleged right is incoherent, because genetic information is shared between relatives. Identical twins for instance share their germ-line DNA sequences. Moreover they observe that irresponsible uses of personal genetic information can easily harm relatives. They think that these considerations undermine the very idea of a libertarian right to test.
In my commentary to their response, I defend the libertarian right to test against such criticism, introducing a distinction between having an exclusive right the DNA in my body and having a right to shared genetic information more abstractly conceived. This is analogous to the distinction between owning a book (and having a right to read the information it contains) and owning the copyright to the text in that book. Twins’ rights are distinct and they do not logically conflict, because each twin has the sole authority to control the DNA in their respective body and the information coming from it, not the information coming from the DNA of the other twin.
Of course relatives may have rights against specific uses of genetic information by their relatives. It is plausible that persons have rights to privacy, which may be violated by irresponsible uses of my rights. For example, I should not upload my entire sequence and post a link to it on my Facebook page, without asking my twin’s consent. My libertarian right to my genetic information must be exercised within the limits set by my twin’s (arguably) equally strong right of privacy. The contour of my libertarian right to test is determined by other rights my genetic relatives have. (Providing a coherent and uncontroversial account of rights to genetic privacy is a distinct philosophical challenge.)
Does that mean that the libertarian right to test is an “empty” right? No, because having a libertarian right to test shifts the burden of the proof. Having a libertarian right to test means that, in the absence of such demonstrable conflicts of rights, individuals should be allowed to test, even if the test has no clinical or personal utility and testing fails to advance their autonomy in meaningful ways. Moreover, the libertarian right to test provides an independent justification, a distinct normative position, which is not affected by attempt to undermines the “autonomy based” argument for the right to test some liberals have defended.