Ethical and Moral Considerations in Personal Genetic Information - Essay Example

? Ethical and Moral Considerations in Personal Genetic Information Ethical and Moral Considerations in Personal Genetic Information Genome research has always been accompanied by ethical, moral and legal issues and a great deal of debate concerning its various aspects. Among the societal concerns raised include fairness of use, privacy and maintenance of confidential information, stigmatization, reproductive issues, clinical safety and feasibility, individual and environmental health concerns, commodification and the uncertainties accompanying genome technology. Such issues have divided opinion right through the middle and it is therefore imperative that critique and healthy discussion be encouraged alongside generation of more information. Amongst these issues, personal genetic information seems to have received less attention in comparison to other aspects such as safety while a closer look reveals that it is equally important due to its potential implications if not addressed properly. This justifies a detailed inquiry into it with relation to its access, utilization, and impacts on individual and societal perceptions on revealed personal genetic information, potential differences in implications to minority communities and how this would take course and finally the emerging trends in personal genetic information issues. A conclusion based on a personal opinion will then be arrived at. The guiding idea to this inquiry is that personal genetic information should be private and confidential to the individual. Personal Genetic Information Personal genetic information has been defined as the entire realm of genotype (molecular), phenotype (physical characteristics which are outcomes of genetic makeup) and family information (phenotypic inheritance). The general avenues of collection of personal genetic information follow these classifications whereby genetic information is obtained through analyses of DNA and proteins, phenotypic information is obtained through tissue tastes, imaging techniques and observation and lastly family information obtained through health practitioners collecting family clinical histories. Genetic mapping and sequencing is a main source of this information. The most critical issues of personal genetic information arise due the present information age where such information is stored in genetic databases or biobanks from which concerns about access arise (Glasner and Rotham, 2004). Issues of Access and Use of Personal Genetic Information Elston, Olson and Palmer (2002) reckon that one of the central issues in the functionality of the physician-patient relationship is that the patient is assured that the information shared between the two parties is confidential and that the fact that genetic makeup is unique to each individual makes personal genetic information perhaps the most private information about that individual. However, the same genetic information may have potentially serious implications to those around an individual and even the society. It is this dilemma that brings about the issue of who should have access to personal genetic information. Among the categories of individuals who fall under considerations include the government, medical practitioners, medical researchers, the general public, the immediate kin, employers and insurance firms. There degree of potential consequences varies with each category with some bearing serious implications than others. For example, insurance firms would be facilitated in gathering information to help predict predisposition to disease, a scenario that may result in individuals having to pay higher premiums for policies or even being shunned entirely. The perceptions of the public and even the family towards an individual may change in case their genetic makeup differs. The information and genetic profiles may also leak to unscrupulous individuals who may use it to blackmail, threaten, disturb or extort individuals. There are however several considerations that may lead to infringement of genetic information privacy in cases where the balance between private and public interests tip towards the latter especially where protection of life, health and safety come into play. For example, there are laws that require mandatory reporting of child abuse and intent to murder. Besides this, absolute confidentiality of genetic information may hinder research that is important in the advancement of medicine and humanity (Elger, 132). Bobe (2007) is of the opinion that controlled access to personal genetic information is the way to go. Controlled disclosure to trusted stewards especially for medical and research purposes should not be shunned alongside other responsible individuals. Such individuals include healthcare practitioners, scientists and researchers, law enforcement officers and family. There however arise concerns on the dependability of such individuals to be trusted stewards. Uncontrolled disclosure may occur through carelessness by the stewards or through hacking. Questions about the use of personal genetic information also arise. Several possible areas of use include medical purposes, research, parentage and family relationships testing and criminal/forensic investigations. Employers may also wish to use genetic information to determine predisposition to conditions such as cancer during hiring and entire employment period in industries such as in nuclear stations besides the need to ensure the rest of the employees are safe from certain conditions from an individual (Human Genome, 2011). Ethical question when personal genetic information is used by employers, insurance firms, courts, schools, the military or adoption agencies however raises questions about possible discrimination (DOE and NIH, 2011; Godard et al, 2003; Geppert and Roberts, 2007). A report by the HGC (2002) indicated that majority of individuals were content in use of personal genetic information for medical purposes, research, identification limited to crime and paternity so long as there is informed consent. Individual Impacts and Societal Perceptions Several concerns arise about the impact of the generated genetic information on an individual and the perceptions the society may develop towards an individual whose genetic information finds its way to the public and especially when such information is deemed to be considerably different from the rest of the society (Jain, 2010). Are there psychological concerns and stigmatization that may occur in such a situation? Extrapolation can be done from other aspects of the society which reveal that the society does stigmatize individuals even basing on medical conditions. Efforts to fight HIV/AIDS have been for a long time derailed by stigmatization of individuals with the disease. The effect of this on individuals has been non-disclosure and lack of cooperation which is important in taming of the disease. When the same is conceptualized for genetic information, individuals whose profiles will be deemed different in the society will most probably be stigmatized. Personal Genetic Information and Minorities Another area of personal genetic information concerns is whether it affects minority communities differently and if so, how this happens. Ivanov and Blue (2008) draw similarities for this in the public health field where they particularly focus on public health screening and the nursing field. Considerations of minorities have to emerge in genetic screening since it creates an intersection of public health, ethics and human rights. African Americans for example had to go through vilification, ostracizing, deprivation of education, sport and employment opportunities all due to sickle cell screening in the past. It is therefore understandable when concerns are raised about personal genetic information among them and other minorities who face prejudice and misconceived associations to certain disorders since it may follow a similar course as that of sickle cell. Issues of access and intellectual property also affect minorities in a unique manner. The first consideration on this is that they are most probably the subjects in studies on them since they are not in a position to be conducting the studies themselves; a link to poverty. In such a scenario, their genetic information will be generated but will not belong to them (DOE and NIH, 2010). They may also have little input on who accesses the information and its use since it may be disconnected from them. Poverty also raises a serious issue on the integrity of informed consent during generation of such information since a situation where they accept to take part in the study for little financial benefit may be seen as financial coercion. Emerging Trends in Ethical Considerations in Personal Genetic Information Some of the ethical considerations that are increasingly becoming important revolve around the interplay of personal genetic information, employment and insurance where discrimination is feared to be a potential consequence. However, insurance firms would argue that they have a right to revelation of all important medical information on a policy seeker which may include genetic predisposition to certain disorders. Employers in certain fields also need information on predisposition to conditions such as cancer and would argue that this is for the individual’s benefit in the face of accusations of discrimination. Perhaps the most unique trend in this issue is in relation to the digital age; sharing personal genetic information on social media. According to SUMC (2009), individuals are finding no problem bonding over the internet even in regards to genetic background. This complicates the issue of privacy and consent in personal genomic information due to the fact that one’s genomic makeup is relevant to entire families hence sharing it online has implications on all individuals in the family. Conclusion Ethical, legal and moral considerations inform debate on personal genetic information in terms of access, use, effects on the individual and societal perceptions and implications to minority communities. Discrimination, stigmatization and misuse are some of the concerns that can be derived in all these situations besides questions on when it is absolutely necessary to reveal the information. Sharing of genetic information over the internet raises major concerns due to the fact that close relatives may be affected. Basing on the discussion, my personal perspective is that personal genetic information should remain just that; personal, only to be used responsibly in forensics, research, medical purposes and in critical situations such as employment in nuclear-based industries. References Bobe, J. (2007). Genomics as a medical tool and lifestyle choice. The Personal Genome. Retrieved 7 October, 2011 from http://thepersonalgenome.com/2007/12/3-modes-of-sharing-genetic-information/ DOE & NIH (2011). Human Genome Project information: Ethical, legal, and social issues. Genomic Science Program. Retrieved 7 October, 2011 from http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml Elger, B. (2010). Ethical issues of human genetic databases: A challenge to classical health research ethics? Ashgate Publishing Company, USA. Elston, R. E., Olson, J. M., & Palmer, L. (2002). Biostatistical genetics and genetic epidemiology. John Wiley, UK. Geppert, C. A., & Roberts, L. W. (2007). Ethical issues in the use of Genetic information in the workplace: A review of recent developments. American Psychiatric Association: Focus, 5:444-450 Glasner, P. E. & Rotham, H. (2004). Splicing life?: The new genetics and society. Ashgate Publishing Company, USA. Godard, B. et al. (2003). Genetic information and testing in insurance and employment: technical, social and ethical issues. European Journal of Human Genetics, vol. 2, 123–142 Human Genome (2011). Employment and genetic information. Retrieved October 7, 2011, from http://www.humgen.org/int/faq.cfm?Idsuj=13 Ivanov, L. L., & Blue, C. L. (2008). Public health nursing: Leadership, policy, & practice. Delmar Cengage Learning, USA. Jain, S. (2010). Ethics in the genetics of epilepsy: What are the pros and cons? Neurology, 15:1, 33-35. SUMC (2009). Risks of sharing personal genetic information online need more study, bioethicists say. ScienceDaily. Retrieved October 7, 2011, from http://www.sciencedaily.com /releases/2009/06/090605075051.htm Read More