The paper 'Collecting And Analyzing Genetic Data In Epidemiologic Research' is a perfect example of genetics research. The collection of Genetic data has favored health benefits in fields of health and health research such as the determination of BRCA1 and BRCA2 genes concerning breast cancer, as well as in diagnosing the chemokine receptors that provided more information regarding HIV and AIDS (Khoury, 1997). These areas of epidemiological research have been aided by the analyses of genetic data obtained from a number of individuals throughout various periods of trial. Recently, however, the growing concern regarding the ethics of collection, analyses, and distribution of such precious genetic data has been expressed.
This discussion aims to highlight some of the growing concerns and the extent of their validity in dealing with epidemiologic research. Where certain people may be skeptical of being subjects for particular research, they may be equally, if not more concerned regarding genetic research for the purposes of promoting better health. Since an increasing number of people in the world are expressing several health concerns, the ethical committees of such researches are promoting their results to be returned to the participants.
This returning of results, whether negative or positive may be due to the underlying confusion between fundamental research and clinical trials, as expressed by the European Federation of the International Epidemiology Association (International Epidemiological Association, 2007). This association works on the principles of autonomy, beneficence, justice, and non-maleficence, thus it is safe to say that the decisions of disclosure of results would prove to be beneficial not only from an ethical standpoint but also with the added benefits of the betterment of health. However, the promptness with returning these results may also be due to legislation regarding genetic research which makes it necessary to reveal these results (Knoppers et al 2006).
This legislation is passed to ensure that the participants are not only independent in making the decisions regarding involvement in research but also their autonomy throughout the course of research. Furthermore, unpublished research may lead to mistrials or redundancy in trials, since genetic research involves dealing with thousands of genomes for construing the various possibilities of discovering as well as assessing the proneness of disease to progress.
There is also the increasing concern of ‘ biopiracy’ (Knoppers et al 2006) wherein the genetic data is analyzed and patented so as to restrict its further usage. The lack of transparency could, therefore, lead to genetic warfare and prove to be hazardous. Another potential benefit of transparency where the results of genetic analyses are concerned is to free its participants of the doubts that they may be kept under whilst undergoing research. Finding out whether or not the results of particular research are negative or positive may result in prompt action by participants in order to save lives or to take preventive measures against certain diseases.
For this reason, the World Health Organization (WHO) mentions the UK Biobank project in its report that serves to consider and discriminate between the diseases caused by genetic predisposition and other factors such as environmental, behavioral etcetera (Laurie 2002). In conclusion, it is the aforementioned reasons that increase the concern of transparency of genetic evaluation with regards to epidemiological research. The reasons are valid, implying that the need for disclosure of the analyses is essential for better research, and to promote better public health.
International Epidemiological Association (IEA). (2007). Good epidemiological practice (GEP) IEA guidelines for proper conduct in epidemiologic research. International Epidemiological Association (IEA.). Retrieved from: http://www.chnri.org/resources/2.%20Research%20Methodology/Topic%202%20Contents%20and%20Criteria%20for%20Good%20Research/Genaeral%20Material/Scientific%20misconduct.pdf
Khoury, M. J. (1997). Genetic epidemiology. Baltimore, Md: Johns Hopkins University School of Hygiene and Public Health.
Knoppers, B. M., Joly, Y., Simard, J., & Durocher, F. (2006). The emergence of an ethical duty to disclose genetic research results: international perspectives. European Journal of Human Genetics : Ejhg, 14, 11, 1170-8.
Laurie, G. (2002). Genetic databases: assessing the benefits and the impact on human and patient rights -- a WHO report. University of Edinburgh, Scotland. Retrieved from: https://www.era.lib.ed.ac.uk/bitstream/1842/2447/1/WHOreportGeneticDatabases.pdf