An ABC “Curious Canberra” article, “Who Owns My DNA When I Send it Off for Analysis?” September 12, 2016, has again drawn attention to an area where there is a great gap in the law, and where the science is way ahead of policy.
In the United States there have been a number of cases where this issue has been examined, most notably Moore v Regents of California (1990), heard by the Supreme Court of California. There, it was held that cells taken from a patient are not their property and therefore individuals have no rights to profits made by Big Med in use of the cells. The problem with the case is that the decision should have examined the information about the cells rather than the physical cells themselves, so the issue was not resolved. Other US cases have also upheld the rights of Big Med, seeing the social interest of medical research and corporate profits overriding personal privacy.
This case law conflicts with a popular intuition that people do own their bodies in the sense of having self-dominion and control, for if one does not, then what does one really own, if anything? If a person has rights then surely they must have a right to their body and what is removed from it. Ironically the US supreme court in the abortion case Roe v Wade (1973), affirmed that the right to privacy under the due Process Clause of the 14th Amendment of the US Constitution, gave women a right to their bodies, so that abortions could be performed up until the time of foetal viability outside of the woman’s body. Why then should there not be a continuation of this privacy right to basic bodily parts and information?
In Australia, the case law is not settled on this matter, and there is no DNA Property Act. With advances in genetic testing and research there is more need than ever before for the law to provide legal protection to individuals for the privacy of their genetic information.
In the US various states have passed genetic privacy laws which make an individually identifiable DNA sample the property of the sample source, that is, the person from which the sample came. This would not only protect the interests of the individuals in question, but also give a right to transfer control, thus still enabling research to continue, but without the corporate exploitation that has been present in the past.