Privacy is a right with many aspects. Although, a uniform approach on privacy is quite often sought, a consensus is growing that there are not only one but many privacy rights. This chapter explores whether there is in fact a right to protect our genetic privacy, since this is a right quite unique in its characteristics and is certainly not identified with our general presumptions about privacy. Its uniqueness lies in the fact, that apart form the dominant definition of privacy as a right to be let alone, as an individualistic right, genetic privacy protects not only the individual but also the members of his/her family. The present paper is examining the ‘hereditary’ and ‘shared’ character of our genetic information in an attempt to shape a right to genetic privacy that is based on the equilibrium of individual autonomy, family and public interest. In order to support such an argument, the premises of our genetic self are examined in connection with autonomy and its boundaries, mainly paternalism and genetic exceptionalism. Along this line, basic notions of the liberal privacy theory are critically examined, mainly the notions of control, confidentiality and consent, so as to maintain the existence of a right to genetic privacy that can enhance the individual’s autonomy without founding it on its selfish, individual interests.
TopI. Introduction: Is Genetic Privacy An Individualist Right After All?
At the core of the constitutional and philosophical debate, privacy is sometimes considered to be an individualistic right. Thus, a right exclusively orientated in protecting the private goals and aspirations of the individual. In that context privacy bears an unsocial, narcissistic meaning, which is setting apart the subject from society or even from its intimates. As Richard Posner (1981) supports, privacy in this perspective is not a right worth of constitutional acknowledgment or value, but a protective veil, an asylum for the subject to adopt illegal activities or cover unsocial endeavors.
Nevertheless, as far as genetic privacy is concerned the term ‘individualistic’ can be highly contested. The right to genetic privacy is considered to be quite new, since it is connected to the relatively recent technological evolution of decoding the human DNA. The right to genetic privacy brought forward a new aspect of the human self, a rather comprehensive and peculiarly, not individualistic one. The human genome contains not only the information based on which we are distinguished from the others but also the information that define our roots, our family heritage, our parental co-belonging. From this point of view the right to genetic privacy sets a question mark: to whom our genetic decisions lie with, to what extent can we consider them a ‘private matter’ when our human genome contains information that we share with our parents, siblings, ancestors and predecessors. In two words, having a right to genetic privacy does or does not give the subject the autonomy to drive its genetic identification by his/her own will?
Let us get acquainted with the ‘shared’ privacy that the human genome entails using two uneven paradigms. In the case Paulík versus Slovakia (European Court of Human Rights (ECHR), Decision of 10.1.2007) the ECHR handled the following circumstances: the applicant had a sexual encounter with a woman in 1966, who gave birth to a daughter on December 17th of the same year. The applicant denied his paternity and the mother of the girl pursued him in the national courts, which asserted his paternity based on a medical test known as ‘blood hereditary test’, a sexology report and several witnesses. Consequently, the applicant was legally acknowledged as the biological father of the girl in 1970 and supported her financially ever since. To a certain point and when she was a teenager, the applicant started to develop a personal bond with her, which evolved in a familial relationship. At 2004 the applicant and his daughter quarreled over a financial subject. The quarrel led them to take a DNA test which proved without any doubt that he was not her biological father. The applicant turned to the national courts which insisted on the 1970 decision on the grounds that the legal acknowledgment of his paternity was in fact irreversible (res juridicata). Thus, they denied the applicant’s wish to cut any legal, biological or material relationship with his legal but not biological daughter. The applicant then applied to the ECHR in order to protect his right to privacy under Article 8 of the European Convention of Human Rights.
This legal-real life scenario underlines several observations connected to genetic privacy. The applicant’s right to his identity, thus his privacy, has been severely inflicted because he has falsely adopted the qualities of a father. The Paulík versus Slovakia case not only points out the importance of the genetic evolution regarding the individual’s self-determination but also the close connection between our biological and our ethical identity. The applicant, Paulík, was imposed with an identity that he did not select: the powerful and symbolic identity of a father. Regardless the actual ties that he developed with his legally acknowledged daughter, what mattered the most was the biologically truth of the physical bond connecting them as parent and child. Thus, genetic privacy is a matter of individual privacy, of personal identity and of choices for the subject. But it is also a matter of intimacy, of connecting and co-belonging in a biological and material sense. Not only Paulík but also his daughter was inflicted in this sense. She also had to bear the symbolic identity of the daughter and to suffer of a broken familial bond. What was violated was their shared right to their genetic heritage and their biological family ties.