Futuristic movies are a thing of the past. Clones, drones and robots are about as ground-breaking as planes, trains and automobiles. Fingerprinting is a normal rite of passage; if you want to travel internationally that is. What were personal details in one’s life are now framed online through social media technology; we don’t have to call people anymore, we just have to update them on an hourly basis on our ‘status’ so that we all know that somewhere, out there, we individually exist since co-existence is kept at a proper distance.
This may be an exaggeration of the current state of social affairs. In all fairness, current trends and advances in technology attest to the wonderful creativity of humanity. However, in an effort to expand the horizons on technology, the issues of privacy and confidentiality are becoming increasingly at risk as the technological possibilities in our society leave us wondering to what extent is it just to expose or protect ourselves.
To get to the heart of the matter, I will address something that is even deeper than that, per se. This depth I refer to is the miniscule stamp of our individual existence. This stamp is our personal coding system that no technological achievement has been able to create with as much originality, intricacy and detail. Yet, what if we are our own worst enemies? In an effort to live healthy lives by embracing preventative healthcare, will the genetic testing that reveals a woman is predisposed to breast cancer eventually eliminate her access to insurance if she develops the disease of a ‘predisposed’ condition (Rosen, 2003, p. 37)? Or what happens if you are falsely arrested or accused of a crime you did not commit, but you lived in an American state that required your DNA sample upon a felony arrest (Rosen, 2003, p. 37)-regardless of acquittal, you left a piece of yourself behind in more ways than one.
Of course, there is always the counterargument that DNA databases, such as CODIS in the Unites States, ‘Combined DNA Identification System’ (Rosen, 2003, p. 38), serve the public by providing a honing beacon to track criminals and ‘exonerate’ convicted innocents (Rosen, 2003, p.38). Further to this, genetic markers that foretell predispositions to fatal diseases may provide life-saving interventions if detected early enough and minimally serve as prepatory defenses against devastating illnesses. Do the benefits of DNA testing and Genetic marking outweigh any potential or actual burdens they could inflict on personal privacy and confidentiality? Regardless, the ethical considerations surrounding personal privacy and confidentiality deserve notable attention in an effort to do justice for one and for all involved in DNA database and Genetic marker debates.
In an effort to take into consideration the concepts of privacy and confidentiality in relation to DNA databases and the use of Genetic markers, I will engage in a discussion of these concepts as they relate to justice. With regards to justice itself, I will, ironically enough, relate Aristotelian principles to modern technology. Something old to something new, but arguably, tried, tested and true. While there are varying forms of justice, and a variety of theories on justice (Beauchamp T.L., Childress, J.F., 2009, p. 244), I will first focus on the theory of distributive justice.
As Aristotle explains, ‘what is just is in a distribution, and what is just in this sense is a mean, while what is unjust is what is disproportionate, for what is proportional is a mean and what is just is proportional’ (Aristotle in Sachs, 2002, p.85). In this explanation of justice, it can be extrapolated for the purpose of this discussion to show that a breach of privacy and confidentiality in relation to the use of DNA databases and Genetic markers is unjust or disproportionate. Whereas adherence to or upholding the principles of privacy and confidentiality is proportional to the use of DNA databases and Genetic markers, and this proportion is a mean, and what is just is proportional, in the sense of its use or its distribution. More explicitly, the distributional use of DNA databases and Genetic markers is proportionate, or just, to the mean that it is distributed in society. Therefore, should the use of DNA databases and Genetic markers lean exclusively towards the benefit of scientific research, or the sole purpose of capturing criminals, it would be disproportionate to curing diseases through early, genetic identification or safeguarding society through personal identification, and would, therefore, be disproportionate, or unjust in its use. Furthermore, if the use of DNA databases and Genetic markers were utilized to the degree that they invaded privacy and confidentiality in such a way that was disproportionate to their use, they would therefore be unjust.
For example, if DNA were collected randomly on innocent bystanders rather than persons arrested for suspected crimes, than this would be a disproportionate use of public safety measures, to the extent that it would not even be disproportionate to the use of privacy, but rather, a breach of privacy and therefore it would not be a lack of justice but outright injustice. To delve even deeper into this example, there is a possibility that taking a DNA sample from an arrested person is unjust as there is the possibility of their innocence. This seems to lean towards the assumption of guilt precluding that of innocence. Yet, in so far as there is a proportional mean to provide a rationale for the collection of personal property, for example, to prove innocence as much as to prove conviction, this proportion of justice may be enough to be a mean in this situation, to the extent that it is not disproportionate, or unjust to do so. Therefore, if DNA is collected from an arrested person, it should be with the intention of proving innocence in as much as it is to prove guilt, lest the this action prove to be weighted below the mean of justice.
When it comes to Genetic testing, an application of justice is also particularly relevant. To illustrate this point, I will draw on the example of testing for genetic mutations related to disease prevention. One such example is the genetic mutation test for the identification of the BRCA1 and BRCA2 genes which indicate an increased risk in carriers for breast and ovarian cancer (Canadian Breast Cancer Foundation, ‘Genetic Testing’). As previously mentioned, a troubling question for those who undergo this specific testing could be whether or not there might be discrimination towards their ‘predisposition’ (Rosen, 2003, p. 37) for this disease and create a barrier in their access to insurance coverage, should they eventually develop these cancers. This particular dilemma proved to be a concern and was addressed specifically by the creation of the ‘Genetic Information Nondiscrimination Act of 2008’ which ‘protects Americans from being treated unfairly’ and ‘prevents discrimination from health insurers and employers’ (National Human Genome Research Institute). This example serves to illustrate an appropriate allocation of justice in an effort to maintain privacy and confidentiality for those who undergo this genetic testing.
Interestingly, the discussion of these two examples in the context of justice exposes different applications of consideration for privacy and confidentiality. In the first, it would appear that taking DNA samples from arrested individuals does not carry the same concern for privacy and confidentiality that is does for those who may be predisposed to breast and ovarian cancer. The question to pose here is whether this is just. Are some people more deserving of consideration than others? For the purpose of this discussion it is worthwhile to ask whether or not respect for privacy and confidentiality should be weighted equally in the individual who is both a potential criminal with a potential disease, up to being a convicted criminal with a diagnosed disease?
The answer quite clearly is ‘no’, but on the qualifying basis of where such individuals and situations would fall on the mean of justice distributed in society. For example, those who are only potential criminals, or those who are arrested but have yet to be proven guilty or innocent, should be afforded that consideration and taking a sample of their DNA should be with as much intent to prove them innocent as it is to prove them guilty. In this way, technology is as much on their side as is proportionate to invading their privacy and breaching confidentiality to the extent that is can be perceived to be just to do so. The extent of exposure can thus be viewed as a preventative measure to maintaining a sense of justice in society.
When it comes to an individual who tests positive for a disease-related genetic mutation, they should not be discriminated against for having an increased risk for a potential disease, and should be allotted respect for privacy and confidentiality in seeking out assistance from technology to allow them to exercise prevention through early detection. In this example, it is the protection from the exposure of privacy and confidentiality that is the proper allocation of justice, and efforts such as the Genetic Information Nondiscrimination Act will hopefully assist in solidifying an endeavor to do so. Thus, this protection from exposure can also be viewed as a preventative measure in maintaining a sense of justice in society.
While this paper is clearly not equating potential or actual criminals with potential or actual sufferers of disease, they have served as polarizing examples of when it is appropriate and just to either expose personal privacy and confidentiality and when to protect. Furthermore, they reveal how each incidence is an appropriate allocation of justice to the extent that that they are proportionately distributed in society. Each method also employs taking advantage of technology that has the potential to yield information that touches on personal privacy and confidentiality. Yet, as this discussion highlights, it is technology that can be helpful if intended, and safeguarded to do so. In this way, some of the technological advances of society can, in fact, serve as creative conductors of justice, as long as proportionately used to do so.
Christina Lamb has a MA degree in Bioethics and Medical Law and can be contacted at this address.
References
Beauchamp, T.L., Childress, J.F., 2009. Principles of Biomedical Ethics, Oxford University Press, Oxford.
Rosen, C., 2003. Liberty, Privacy, and DNA Databases, The New Atlantis, Number 1, Spring, pp. 37-52.
Sachs, L. Aristotle, 2002. Nicomachean Ethics: Aristotle, Focus Publishing, R. Pullins Company, Newburyport, MA.
Electronic Resources
Canadian Breast Cancer Foundation, ‘Genetic Testing’, Found at: http://www.cbcf.org/breastcancer/bc_early_ge.asp , Retrieved on: March 25, 2011.
National Human Genome Research Institute, ‘What’s the Genetic Information Nondiscrimination Act (GINA)? Found at: http://www.genome.gov/10002328 Retrieved on: March 25, 2011.
