The seriousness of the ethical, legal and social issues surrounding the Human Genome Project (HGP) is manifested by the fact that 3-5% of the annual HGP budget of the Department of Energy (DOE) and the National Institutes of Health (NIH) is allotted for research of these issues (US DOE par. 1, 12). One of the most sensitive and most debated among the issues is that involving the privacy and confidentiality of genetic information if made available through public databases. Primarily, the question here is who between the owner of the genetic information and the public should be allowed to control and gain access to the information.
The arguments of both sides can be easily summed up as a clash between privacy and public good. On the one hand, people who argue for privacy are concerned about the identity protection, discrimination and possible malicious use by third persons of their genetic information. On the other hand, people who argue for public good showcase the huge potential improvement in medical research, diagnostics and pharmacology; more efficient handling of criminal cases; as well as chances for huge leaps in understanding human biology.
Privacy is one of the most sacred rights guaranteed by the Constitution (Olmstead v. US 438). It is a protection that guarantees individuals against unwarranted intrusion into their private lives, in this case, identity. Identity theft for example, has been a concern for decades and has even been labeled as the crime of the millennium (Hoar). Viewing this issue with the fact that information has become and is continuing to become more accessible and allowing availability of genetic information, public databases may not seem to be a very good idea.
While it is possible that donors of genetic information have not reported or are claiming to have not experienced any untoward incident that is related to the publication of their information (Venter), there is no guarantee that people who have interest in the information will not use the information for their own purposes even to the prejudice of the owner. Access by insurers to the information for instance, will open doors to issues on discrimination. The same is true if information is made available to employers, who may deny employment on the basis of the risk posed by the information.
Information may also be used for commercial purposes when it gives industries the more power to create needs as well as fear on the part of the consumers. It is true that our society recognizes that privacy must sometimes yield to public interest and it is undeniable that such public interest exists. Having a genetic database available to the public or even just to the scientists may make way to leaps in the field of medicine, and true enough, as testified by some officials (O’Malley), it makes possible an improved crime rate as it makes investigations more certain and convenient.
Admittedly, there are instances when access to genetic information is so valuable to the point of being a necessity (e. g. to prove innocence; to prove guilt upon showing of the existence of probable cause). But these reasons are not enough to force innocent people to give up their constitutionally guaranteed right against intrusion without their knowledge or consent unless enough protection against abuse by third persons is adequately guaranteed. As of the moment, the only law that has been passed regarding accessibility to genetic information is the 2008 US Genetic Information Non-discrimination Act (CRS Report for Congress 1-22).
Unfortunately, although it may protect people from genetic discrimination by insurers and employers, it does not answer the issue on third-person abuse. There is still no standard to guide or limit the use of genetic information. Even the question on how conviction equates to permanent forfeiture of privacy is yet to be answered. Adequate protection against misuse of genetic information cannot be had unless the regulations keep up with the new issues particularly those involving constitutional rights.
Until such time, even public interest should not deny the individual with one of the most fundamental rights recognized in most, if not all civilized nations.
CRS Report for Congress. The Genetic Information Nondiscrimination Act of 2008. 15 April 2009 <http://www. oregon. gov/DHS/ph/genetics/docs/CRS_GINAsummary. pdf> Hoar, SB. “Identity Theft: The Crime of the New Millenium. ” United States Attorneys’ USA Bulletin. Volume 49,2 (2001):16. Olmstead v. US. No. 493. Taft Court. 1928.