“My scientific studies have afforded me great gratification; and I am convinced that it will not be long before the whole world acknowledges the results of my work” (as cited in Chaskey, 2014, p.52). These words certainly ring true for renowned founder of modern genetics, Gregor Mendel, whose experiments on plant hybridization led to the discovery of the underlying principles of heredity. Your DNA might offer you an explanation as to why you have your father’s eyes and your mother’s dimples, but your genetic make up can provide you with vital information beyond your physical attributes.
We have evidently made tremendous strides since pea plant experiments. Established as one of the 12 determinants of health, our biological and genetic diversity is a key contributor to disease development. The study of trait inheritance and the mechanisms by which they are transmitted from parents to their offspring can be indicative of lifespan, health status and the susceptibility to illnesses. Whether it be biological factors such as age and gender, or a dysfunctional or mutated gene as seen in sickle cell anemia and BRCA1/BRCA2 genes which increase the risk of breast and ovarian cancers (Chen & Parmigiani, 2007), they are part of the overarching definition of health.
The Human Genome project (HGP), completed in 2003, has been one of the most influential collaborative biological research projects to date (National Human Genome Research Institute, 2007). Since locating approximately 20 500 genes comprising the human genome, scientists expect it will facilitate future research into the etiologies of complex diseases such as cancer and Alzheimer’s. Although genetic testing has mainly been praised as a diagnostic tool, the scientific community is hopeful that it also will be employed in the development of personalized treatments as well as the detection of genetic predispositions to major non communicable diseases such as cardiovascular disease and mental illnesses. As a result, numerous ethical and social questions are being raised as this technology threatens to become a slippery slope (Bleeker, 2013a,b). The Ethical, Legal and Social Implications research project (ELSI) in accordance with the HGP, was initiated with this in mind. It serves to fund and manage studies addressing the aforementioned issues (ELSI Research Advisors, 2005).
Arguments against genetic testing and manipulation might seem like far-fetched ideas right out of an Aldous Huxley novel, but are important issues to bear in mind. Examples consist of, but are not limited to: genetic engineering allowing us to manipulate our physical and psychological traits, insurance companies discriminating against individuals with particular genetic markers and DNA testing on newborns or persons incapable of giving consent. ELSI hopes to educate the public concerning genetic variance and acceptance in the hopes of preventing stigmatization, while simultaneously developing relevant policies to further enforce these ideas. But until these threaten to become reality, we are better off sticking to literary fiction.
References
Bleeker, Helena. (2013a). The ethics of pre-implantation genetic diagnosis in practice: an analysis of the feasibility and ethical considerations of applying and regulating genetic enhancement. Interdisciplinary Journal of Health Sciences, 3(2). Retrieved from http://www.riss-ijhs.ca
Bleeker, Helena. (2013b). The ethics of pre-implantation genetic diagnosis: an opinion piece examining the moral distinction between positive and negative selection of traits using PGD. Interdisciplinary Journal of Health Sciences, 3(1). Retrieved from http://www.riss-ijhs.ca
Chaskey, S. (2014). Seedtime: On the History, Husbandry, Politics and Promise of Seeds. New York, NY: Rodale Books.
Chen, S. & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology, 25(11), 1329–1333. doi: 10.1200/JCO.2006.09.1006
ELSI Research Advisors. (2005). Ethical, Legal and Social Implications (ELSI) Research Advisors Report to the National Advisory Council for Human Genome Research. Retrieved March 19, 2014 from http://www.genome.gov/pages/research/der/ELSI/ERA_ELSI_Report_Feb_2005.pdf
National Human Genome Research Institute. (2007). A guide to your genome. Retrieved March 19, 2014 from http://www.genome.gov/Pages/Education/AllAbouttheHumanGenomeProject/GuidetoYourGenome07_vs2.pdf
Julie Boucher
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