The use of DNA sequences and samples in mitigating against contemporary and future problems is an idea looked upon with much glee. The proposed Bills, therefore, appear to offer solutions to modern day problems at face value. Some of these novel solutions include for identification purposes, combating crime, improving service delivery, resource planning and allocation and finally the promise of better healthcare delivery. However, the resultant consequences of adopting the proposed Bills far outweigh any benefits that they bring. The first Bill on National Genetic Registry and Repository for instance, opens a door for potential abuse by relevant authorities and private entities. An alternative to this Bill will involve doing away with the notion of having a DNA database and instead focus on improving existing data collection and records. Both the proposed second and third Bills on Gene Therapy and Manipulation and Precision Medicine proposed by the NIH should also not be voted for since they infringe on individual privacy rights and on the ethical principles of autonomy and respect to persons respectively. By legislating a mandate to have the genome of every person obtained in a database opens room for abuse, potential hacking of crucial genome data among other repercussions. As such, the three Bill should not be voted for.
The first Bill on National Genetic Registry and Repository raises a lot of privacy issues. The magnitude of the Bill however lies in the fact that it proposes to infringe on the privacy of individual persons- their genome. The pertinent question while looking at this Bill will be, ‘Is information on DNA Sequence considered exclusively private or is it in the same category as one’s medical records?’ If it is not exclusively private as adjudged by existing legislations, then the prevailing laws regarding medical records should apply. Personally, however, DNA sequence should be considered unique because it not only contains information about a person’s medical history but also the person’s future risk. Herein lies the problem. Consenting to this Bill will give room for probabilistic governance by the government since the DNA of people will provide a “future diary” as Rubinstein (173) opines. The implication of consenting to this Bill is thus that the government will be tempted to overstep its mandate and assume the “divine role” of making plans with potentially deadly repercussions using the populace’s DNA sequence. Therefore, in as much as the Bill may hold promises of easy identification and even promises to offer improved healthcare due to access to individual’s DNA’s, the potential risks far outweigh this benefits. A recommendation and alternative in this regard involves improving the existing data recording methods and ensure their efficacy.
The second Bill on Gene Therapy and Manipulation promises to offer better healthcare through the use of genetic therapies. Consequentially, easing restrictions on genetic manipulation of both the human genome and tissue are considered viable options in this endeavor as the Bill proposes. However, consenting to this Bill will be a clear violation of the ethical principle of respect to life. In as much as beneficial aspects that come with consenting to the Bill can be envisioned such as improved remedies for chronic diseases, infringing on fundamental ethical principles will prove costly in the long run. According to Singer (341) the moral fiber of any society hangs on the upholding of the ethical principles and their violation will lead to a moral-less society. A soulless society can be the only outcome of this action. Additionally, provisions for signing the informed consent waiver by Americans in order to expedite genetic testing is a clear ethical violation.
The Precision Medicine Bill has a twofold mandate. First, it not only seeks to collect a national DNA database with additions to the Affordable Care Act 2014 (Obama care), but it also seeks to process the submitted DNA samples by insurance countries. Obviously, a National DNA database is an invaluable tool in combating crime and terrorism as Gathmann (372) documents. However, extending this data pool to the larger populace is a clear infringement on privacy matters. Furthermore, consenting to the precision medicine Bill will allow for the grouping of the populace when it comes to combating crime. Given, DNA samples help in tracking criminals and placing them on a crime scene. However obtaining an entire population’s genome on the premise of keeping the people safe creates a situation whereby their thin line between the criminals and the citizenry.
A distinction has to be made between DNA profiles and a DNA sample in order to understand this Bill further. Whereas a DNA profile gives limited information regarding a person, a DNA sample such as the one proposed, gives a ton of information regarding a person. This information ranges from one’s ethnicity to their level of disease susceptibility. Having such crucial information is akin to calamity since the risk of abuse by government authorities and commercial establishments is high. For instance, with the ever increasing crime and terrorism in the contemporary world, there is increased cooperation between different government s to combat the vice. This collaborations may lead to the sharing of DNA samples between different law enforcement agencies, a fact that will augment the risk of hacking into the DNA databases. The repercussions of this measure can only be imagined. Therefore, consenting to this Bill may prove quite costly in the long run and I highly discourage it. Conclusively, in as much as inroads have been, and still are being made with regard to the human genome, a thin line exits between the risk of a plausible decent to moral decadence and maintaining sanity and morality. Your vote on these Bills will thus contribute in shaping the future along these lines. Voting for this Bill will also ensure that privacy rights will continue to be infringed upon as experiments advance in order to understand the human genome better. Technological advancements in matters forensics will thus likely experience an exponential and unprecedented growth as the human genome is further explored. However, it may be useful to observe that failure to enact these Bills will in no way derail technological advancements on the human genome, albeit it will occur slowly. Provided human dignity, privacy and ethical principles are upheld, these should not be a problem. It is good to also remember that history is bound to judge us with the decisions that we make. Therefore, making crucial decisions such as the ones on the Bills should be guided by a good and clear understanding of the causes and repercussions of such actions. Therefore, playing God in trying to access, use or manipulate DNA samples belonging to people has been proven to come with hefty prices. Voting for these Bills will thus be a vote for anarchy and the end of humanity as we know it.
Works Cited
Gathmann, B., et al. "The German national registry for primary immunodeficiencies (PID)." Clinical & Experimental Immunology 173.2 (2013): 372-380.
Rubinstein, Wendy S., et al. "The NIH genetic testing registry: a new, centralized database of genetic tests to enable access to comprehensive information and improve transparency." Nucleic acids research (2012): gks173.
Singer, Peter. Practical ethics. Cambridge university press, 2011.
