Level of Faith We Have in Technology - Essay Example

Introduction It is an indisputable fact that technology has tremendously changed every aspect of human life. The level of faith we have in technology is extremely high, considering that we rely on technology for almost everything, be it navigation, memory, weather forecasts, and even our thinking paradigms. How far can we let technology decide everything for us is a difficult question. Can we allow technology to decide whether or not a couple should bear children? Should we allow technology to decide whether or not a person deserves or is eligible to be employed? Is it reasonable to allow technology to decide whether or not a particular race has the right to live and procreate? Thinking of it from a layman’s perspective, it appears that all of this is unfair. A couple has full right to decide whether or not it wants children, an individual has every right to be employed as long as his or her talents fit the eligibility for employment, a particular race has every right to inhabit the earth as do other races. Simple! Problems arise when these questions are answered from the perspective of an expert geneticist. He or she would think that a couple at risk of giving birth to a child with an untreatable disease should not bear children. A race with a recessive trait for a deadly disease should be monitored and the mating habits of its members should be modulated to avoid the multiplication of individuals with disease traits. This reasoning does not sound unfair at all! The problems become more complicated when these questions are answered from the perspective of a biased individual, especially one who has the power to influence or even make public policies, who may use such excuses to further his own selfish motives such as the discrimination against a particular race. It is at this threshold that technology takes an ugly turn. Genetic screening and its incorporation in public policy is a matter of widespread debate. Some of the ethical issues and controversies associated with this beneficial yet controversial biotechnological application are discussed here. The paper will introduce the technology of genetic screening, its implications and associated public policies. It will then discuss the ethical issues associated with the incorporation of this technology is public policy. The subject of ethics regarding genetic screening as public policy is vast and it is impossible to draft an exhaustive compilation, no matter how big. However, an attempt has been made here to review some of the most sensitive issues on the matter. 2. Genetic Screening – The Technology and Its Implications Consequent to the completion of the Human Genome Project and advances in the field of genetics, researchers have been successful in identifying genes related to diseases. Diagnostic tests have also been developed to detect such genes. These developments have seeded the “idea” that if genetic testing is done, it will be possible for healthy people to prevent future incidence of disease (Holtzmann and Shapiro, 1998). 2.1. Introduction to Genetic Screening and Genetic Testing Genetic testing is the process of detecting mutations in chromosomes and DNA (“Genetic Testing”, 2006). Laboratory analysis of human DNA is performed after isolating it from blood, amniotic fluid and cells in order to predict the risk of a disease, diagnose a specific genetic disease or identify if an individual is carrying a genetic disease. In addition to identifying alterations from DNA, molecular probes and functional biochemical tests are also used to identify defective genes and proteins. This technology has been existent for almost half a century (Rodriguez, 2011). The earliest known application of this technology was for the identification of phenylketonuria (PKU), a rare genetic disease caused by an inborn error in the metabolism, causing the buildup of amino acid in the blood subsequently leading to impaired mental function (Rodriguez, 2011). The application of this technology later on extended to the detection of sickle cell anemia, Tay-Sachs disease, Huntington disease, Down syndrome, breast cancer, cystic fibrosis, etc. ‘Genetic testing’ is however different from ‘genetic screening’. Genetic screening is the term used to imply the phenomenon wherein genetic and other relevant tests are performed on a large sub-section or section of a population (Plows, 2010). It is defined as – Any kind of test performed for the systematic early detection or exclusion of a genetic disease, the genetic predisposition or resistance to a disease, or to determine whether a person carries a gene variant, which may produce disease in offspring (Ayme, 2003). While genetic testing is at individual level, genetic screening is the application of genetic testing at a population level. It is essential to acknowledge the difference between genetic testing and genetic screening because genetic screening is offered as “a part of standard population wide healthcare” such as prenatal tests for chromosomal defects, and genetic tests have an opt in approach where individuals can seek diagnosis for diseases (Plows, 2010, p. 100). Genetic screening is a ‘medical act’ and the public has to comply with the professionals who have been ordered to perform genetic screening (Ayme, 2003). This type of screening is different from medical screening because the disorder detected is of genetic nature and thus may have implications not only for the person but for his family. 2.2. Medical and Social Impact of Genetic Screening Genetic screening could be diagnostic/confirmatory or predictive. Predictive testing is helpful in order to prepare a family or population of possible medical conditions that may arise from genetic abnormalities, in order to prepare them for possible treatments and help in making informed decisions (Rodriguez, 2011). Prenatal testing can be performed for pregnant women to detect chromosomal aberrations in the fetus, so that decision can be taken to terminate or continue the pregnancy. Preimplantation diagnosis can also be done to screen for embryos that have defective genes and select healthy ones. Carrier testing is another form of screening in which inherited genetic mutations can be identified in families with history of a particular illness. It is used to determine the possibility that a copy of a defective gene can be transferred to the offspring (“Genetic Testing”, 2006). In the US, newborn screening is the most common type of genetic screening. Each year in the US, around 4 million infants are subjected to newborn screening by state-chosen panels for rare endocrine, hematologic and metabolic abnormalities (Ross et al., 2013). This is done to reduce and even prevent morbidity and mortality. In some countries, genetic screening is offered through health fairs in public areas such as shopping malls and stores (McQueen, 2002). This kind of screening need not necessarily be invited or appreciated by the public. People comply with screening upon being encouraged by a health practitioner, advocacy group or diagnostic company (McQueen). The genetics of most diseases make it difficult to accurately predict the clinical outcome of a genetic mutation (Holtzman and Shapiro, 1998). However, prediction of certain risks such as sickle cell anemia and phenylketonuria may be helpful, and in absence of an untreatable disorder, the conception or even birth of an offspring can be avoided. In Cyprus, Sardinia and several Mediterranean regions, there has been a significant reduction in the births of thalassemia afflicted infants through the application of prenatal diagnosis of couples. However, genetic screening induces the risk of discrimination as well as other unfavorable situations. For instance, the genetic screening of black in the US had racial undertones (Bowman, 1977). Sickle cell disease is predominant in Afro-American ethnic groups and it had been suggested by many advocates that genetic screening programs for sickle cell disease were improperly applied and there was discrimination against blacks. Same is the case of Tay-Sachs disease which is found in populations of Jewish descent. Sickle cell testing was made compulsory in the early 1970’s in 12 states in the US and African-American populations were especially targeted (Rodriguez, 2011). However, the National Sickle Cell Anemia Control Act passed in 1972 put the discrimination in check. Many other hemoglobin and other traits predominate in certain ethnic communities and screening for these disorders puts the communities in danger. Some of the ethnic communities are mentioned in figure 1. Figure 1 - Hemoglobin traits in ethnic communities (Atkin and Ahmad, 1998, p. 445) Another social implication of genetic screening is at the workplace. There is risk that results of genetic screening could be used for making employment decisions (United States Congress Office of Technology Assessment, 1991). Employers may reject individuals on the basis of their genetic susceptibility to a disease. 2.3. Public Health and Public Policies Genetic screening is incorporated as part of public health programs sponsored by the government (Mao, 1998). Various groups sponsor genetic screening as a public service. These include city and state health departments, disease-related foundations, health maintenance organizations, physicians and other medical and non-medical groups (National Research Council Committee for the Study of Inborn Errors of Metabolism, 1975). Public health policies propose to use prenatal genetic testing and carrier screening to reduce the incidence and occurrence of disease (Monagle and Thomasma, 2004). Various policies are in place for newborn and prenatal genetic screening. The Centers for Disease Control (CDC) introduced national guidelines and programs in 1996 for the prevention, detection and treatment of iron-overload diseases (Dorman and Mattison, 2000). Through reliable and effective genetic screening tests, it became possible to avoid complications resulting from these diseases. A report published by the Committee on Assessing Genetic Risks in 1994 stated that there is “both a need and the opportunity to increase public literacy about geneticists and genetic testing” (Dorman and Mattison, 2000, p. 117). Public health screening of newborns spread rapidly in the US. Virtually, every newborn has blood collected for testing. Newborn screening programs administered by the state came into existence after Guthrie developed an assay in 1961 for the detection of PKU using dried blood spots. This assay was implemented population-wide (Ross et al., 2013). The rapid expansion of public health screening led the World Health Organization to appoint an investigation by Wilson and Jungner. They enumerated 10 criteria (figure 2) in 1968 for conditions suitable for screening. Figure 2 - Wilson and Jungner criteria for screening (Ross et al., 2013, p. 2) Policies also exist for carrier screening in selected sections. For instance, the National Collegiate Athletic Association requires Division I athletes to be screened for sickle cell traits. School based genetic screening has not been supported by the American College of Medical Genetics and Genomics (ACMG) and American Academy of Pediatrics (AAP) (Ross et al., 2013). Genetic testing is monitored by the Department of Health and Human Services (HHS) agencies like the Food and Drug Administration (FDA), Centers for Medicare and Medicaid Services (CMS), and the CDC. The CDC sponsors the EGAPP (Evaluation of Genomic Applications in Practice and Prevention) program aimed at establishing and evaluating an evidence-based systematic process to evaluate genetic tests transitioning from research to public health and clinical practice (Huang, 2008). The Congress is considering legislative measures for the prohibition of genetic discrimination on the basis of genetic screening due to risk of discrimination by health insurance providers, employers, etc. (“Genetic Testing”, 2013). 3. Genetic Screening as Public Policy – A Matter of Ethics? Genetic screening as public policy raises a large number of questions such as: What populations should be tested? How can the genetic tests be regulated? Should the FDA regulate home brew tests like other diagnostic devices? (“Genetic Testing”, 2013) Which tests can be approved and which cannot be approved? On the basis of what criteria should a test be patented and how will scientific research be affected by such patents? (“Genetic Testing”, 2013) Before offering genetic tests to public, what level of clinical, analytic validity and utility is required? (“Genetic Testing”, 2013) Who is authorized enough to validate or make mandatory genetic tests for specific disorders? What kind of counseling should be provided to the public and by whom? (“Genetic Testing”, 2013) How can genetic discrimination be prevented and who has the responsibility to safeguard the public’s rights? Apart from these questions, genetic screening also raises a large number of ethical questions. These are discussed in the succeeding sections. 3.1. Prenatal and Newborn Screening Prenatal testing for disorders such as Down syndrome and cystic fibrosis may be beneficial. However, if a couple decides to terminate a pregnancy merely because a genetic test reveals that the baby is ‘at risk’ of acquiring a disease later on in life, would it be fair? The question here is, who has rights over the life of the child? His parents or he himself? As described by Elena A. Gates – Unfortunately, prenatal testing has not yet led to meaningful therapy for fetuses affected with most of the conditions that can be identified. Even when treatment becomes possible before birth, difficult decisions about the relative risks of treatment, the effectiveness of the therapy, and the need for ongoing and potentially burdensome interventions will remain. One set of conditions for which prenatal diagnosis is frequently used, chromosomal aneuploidy, will probably never be ameliorated through fetal therapy. Selective abortion of the affected fetus will remain an important alternative (cited in Rodriguez, 2011). If selective abortion of the fetus is an “important alternative”, as mentioned by Gates, is to be accepted, does not the fetus have rights over its own life? If a couple deems it fit to abort a child because of certain genetic predispositions, and if such an option is believed to be ethical, then will the couple also have the right to choose abortion if the fetus has other genetic characteristics, such as gender, eye/hair color, etc. that are not preferred by the couple or the mother? In the case of newborn screening too, similar questions arise. If a child is diagnosed with an untreatable disease, such as Huntington disease, whose symptoms will become apparent only at a later stage in life, will it be wise to let the child and his/her family know about the genetic predisposition? In such a case, life would become very difficult for a normal individual if he/she is informed about the fatal or unfavorable circumstances he/she is destined for! A study by Lisker, Carnevale and Armendares on Mexican and Chinese geneticists’ views on the ethical issues of genetic screening lends some insights into the problems associated with newborn screening (1999). They provided the percentage of geneticists from Chile, China, Cuba, Mexico, Peru and USA who agreed with genetic testing of children with late onset disorders (figure 3). Figure 3 – Percentage of geneticists agreeing with genetic screening of children for late onset disorders (Lisker, Carnevale and Armendares, 1999, p. 325) They observed that a majority of the geneticists agreed to the testing in newborns. However, only 27% and 26% geneticists in the US agreed to testing for Huntington and Alzheimer disease, respectively. They state that geneticists are apprehensive of this testing because these diseases cannot be prevented from occurring. Moreover, if the child’s autonomy is to be respected, a decision would not be taken for him/her, leaving the decision to be taken by him/her in early adulthood. Moreover, they also theorized that there is risk that children would be discriminated against or stigmatized as having the disease before they even develop it. On the other hand, geneticists appreciate screening for familial hypercholesterolemia and cancer because this may result in early diagnosis and even prevention. It is thus apparent that the ethical questions not only vary according to the kind of genetic screening but also the type of disorder being screened. If at the genetic screening of newborns is ethical, who decides whether the newborn should be screened? The newborn or the parents, the health practitioner or the extended family? At what age should the child be screened? Both prenatal and newborn genetic screening is associated with several other ethical concerns. Screening and detecting certain diseases in individuals may in fact make them even more susceptible to diseases. For instance, there are concerns that if a newborn is diagnosed with a risk of cystic fibrosis, frequent diagnostic tests later on may in fact introduce pathogens in the lungs, resulting in an earlier incidence of the disease or other diseases (Taylor and Wilfond, 2004). Many studies including those by Taylor and Wilfond (2004) have detailed these and other ethical issues, taking the Wisconsis cystic fibrosis trial for genetic screening of newborns as an example. In case of prenatal diagnosis too, forming a public policy to screen all fetuses would result in social and legal stigmas against women who choose to carry the pregnancy despite knowing that the child may suffer from untreatable disorders such as Down syndrome (Brumfiel, 2012). As warned by Henry Greely, regarding Down syndrome, “there are countries that are very concerned about mental retardation and might be willing to enforce genetic selection to avoid it” cited in Brumfiel, 2012, para. 31). He also asserts that public health services and private insurers may not be willing to pay for the care of a disabled child if his/her birth could be avoided. Another grave concern is that public policy mandate regarding prenatal testing and elimination of at-risk individuals may result in less support and funding for children with these conditions. Individuals may choose to terminate a pregnancy if they know their child is at risk of an untreatable disease that may occur very elderly age. How can one be sure that the technology for curing that disease may not be present by that time? 3.2. Genetic Basis of Discrimination Genetic screening and the information derived from it may form the basis of discrimination against individuals, communities and populations. Innumerable examples exist of this kind of discrimination. If public policy mandates genetic screening, and there are no policies to determine how this information can be used by third parties, there are chances that the results can be used by insurers, employers, etc. to discriminate against individuals. As Monagle and Thomasma point out, the knowledge of an individual’s genetic health risk may be disadvantageous to the individual if the information is used by other parties “outside the clinical setting” to determine the individual’s access to opportunities that are provided by social institutions and other practices that are not related to health (2004, p. 219). A key question asked by them is whether or not life insurance providers should be given access to information from genetic risk assessments of prospective clients. Employees may also utilize such information or seek such information from prospective employees to make employment decisions and avoid hiring those who have a genetic predisposition to a disease. This may be seen as a cost saving practice by employees who face heavy losses due to their employees’ illnesses. Another major ethical issue is the access of health professionals themselves to such information about their patients. If patients are asked to disclose such information in clinical settings, discrimination may arise and the particular health problem may be denied insurance coverage by deeming it as a preexisting condition. Moreover, failure of the patient to disclose this information may also be considered as fraud and all coverage could be cancelled. At any workplace, employees have the right to safety. Under common law as well as the Occupational Safety and Health Act of 1970, employees are entitled to a safe workplace (Osha.gov, 2004). Therefore, if an employer has to provide a safe workplace, he may consider using the genetic screening information to hire people who meet certain genetic and health standards. For instance, an employer may avoid hiring individuals who are genetically predisposed to be susceptible to certain workplace chemicals (United States Congress Office of Technology Assessment, 1991). This way, he can ensure that all hired individuals are not susceptible to the chemicals. This scenario sounds reasonable and ethical. However, it cannot be said for sure that the workplace chemicals will not harm other individuals who are not genetically susceptible to them. In view of the possibility of genetics based discrimination, the US government legislation prohibits any improper use of genetic information (Rodriguez, 2011). Consequently, the Genetic Information Nondiscrimination Act was passed in 2008 to prohibit this form of discrimination with respect to employment and insurance. The Act prohibits employers from using genetic testing and monitoring of prospective employees and hired individuals. The confidentiality of genetic records has been mandated by the legislation. Some people in the US cannot afford health insurance or are either denied coverage due to past illnesses (Holtzman and Shapiro, 1998). Those without symptoms but at risk of genetic conditions were also denied insurance (Holtzman and Shapiro). The Health Insurance Portability Act and Accountability of 1996 prevents the use of information from genetic assessments to be used for denying group health insurance coverage for workers who change employment (Holtzman and Shapiro). Investigations by Billings et al. revealed that genetic discrimination exists in many social institutions (1992). While the research dates back to 1992, present legislation and safeguards over genetic information may have led to a reduction in such discrimination. A large number of people, however, do possess stigmas against people susceptible to disease. A study by Mao to investigate the views of Chinese geneticists regarding genetic screening agrees with this statement (1998). The study showed that more than 90% of the geneticists agreed that partners should be aware of their genetic status prior to marriage, carriers of defective genes should not mate with each other and women should undergo prenatal diagnosis if it is medically indicated. A large proportion (above 80%) of the geneticists also agreed that genetic testing should be incorporated in physical examinations done prior to employment and that governments should mandate premarital carrier tests. A majority of them also agreed that governments should mandate newborn screening for sickle cell disease and Duchenne muscular dystrophy. While all this is reasonable from a geneticist’s point of view, the ethical issues arising cannot be answered by geneticists alone. A shocking portrayal of genetic discrimination and the ethical issues arising from it can be exemplified by the incident reported by Bowman (1960). He reports that back in 1974, he had to provide expert testimony before a grand jury for an Illinois case. The case regarded the death of a man with a sickle cell trait. It is important to note here that the man only had a sickle cell trait and not the disease itself. The man was allegedly strangled, beaten and suffocated with a blanket in a prison hospital by the guards, while attempting to subdue violent acts of the prisoner. Intravascular sickle cells were found during the post mortem and thus the medical legal examiner and Coroner claimed that the man’s death resulted due to sickle cell crisis when pressure was applied on his neck, resulting in hypoxia and death. Moreover, the forensic pathologists reported that the external injuries on the neck were not severe and if the man would have had normal hemoglobin, he could have survived the affliction. Bowman’s testimony was that the findings of the post mortem are not accurate and that presence of sickle cells intravascularly was not a pathological condition. He also asserted in front of the jury that severe neck bruises need not necessarily be present and that asphyxia and death can be caused without leaving severe bruises. In spite of this testimony, the guards were not charged with murder! Genetic information could be put to misuse and in absence of expert consensus, it can be the cause of unfair trials. This might not be an isolated incident. 4. Are the Ethical Questions Justified? Every ethical argument has an opposing viewpoint. And with a topic as controversial as genetic screening, the arguments and counterarguments are diverse. 4.1. Opposing Arguments On the one hand, the prenatal screening and screening of newborns may seem unethical in view of the matters discussed in the preceding section. Terminating the life of an at-risk individual before birth may be unfair because the yet unborn child has the right to live. Moreover, parents cannot be sure that an untreatable disease may not become treatable due to medical advancement in the child’s future. However, counterarguments to this can be raised. It could be thought that if an individual is predetermined to die of a fatal disease such as sickle cell anemia, or suffer mental retardation disorders such as Down syndrome, then abortion may save him/her from unfavorable circumstances in life. Informing the child of a genetic predisposition may make life difficult even prior to acquisition of the disease. However, many argue that it is better for the individual to be prepared well in advance so he/she can make informed health decision and also diagnose the disease early. Depending on the kind of disease, this argument can be accepted or rejected. For instance, if cancer is predicted through genetic screening, prevention and early diagnosis can be done. However, if Huntington disease is predicted early, the individual may always live with the sad fact in spite of it coming late in life. Newborn screening in countries where it is part of public health policy has turned out to be successful (Green, Dolan and Murray, 2006). Studies have also suggested that primary genetic screening for other diseases such as Lynch syndrome and haemochromatosis results in improved health outcomes (Dinh et al., 2011; Delatycki et al., 2012). The early screening for PKU also is also believed to be a hallmark of success of such genetic screening public health interventions (Wilfond and Thomson, 2000). Therefore, the utility of genetic screening programs in newborns and pregnant women cannot be undermined. Regarding the use of genetic information at the workplace, opponents of the Genetic Information Nondiscrimination Act may argue that employers have the right to know whether the individuals they are hiring are healthy and not at risk of fatal or debilitating illnesses. Losses caused due to such circumstances have to be borne by the employer alone. Moreover, if the employer seeks to avoid genetically susceptible individuals, it may not be completely unjustified either. A nation has the right to strive for healthy citizens and a stable economy. To meet this end, public policies that seek to prevent the multiplication of individuals at risk of mental and other abnormalities, in order to lighten the burden on its already dwindling resources also does not seem unjustified. 4.2. Do We Really Need Genetic Screening as Public Policy? Genetic screening has both harms and benefits, under specific conditions. It is extremely important to monitor the use and prevent the misuse of this technology. The question however is, do we really need genetic screening as a public policy? Should public health intervention programs implement or mandate genetic screening? Considering the fact that genetic screening may help prolong the lives of individuals already born by enabling early diagnosis and prevention, and may terminate the lives of unborn at-risk individuals, is it really achieving good health among its citizens? If a nation wishes to prevent undue strain on its resources by preventing the birth or multiplication of diseased individuals, it should also consider the fact that having an extremely healthy population may also be a strain on its resources. A population with low disease incidence and high life expectancy not only strains food and other essential commodities but also increases health care requirements for the elderly, due to increased life expectancy. If a nation wishes to achieve an extremely healthy population out of unselfish motives, merely for the well-being of its citizens, genetic screening may not necessarily help in achieving the goal. This is because it is not necessary that merely screening for genetic abnormalities will result in a happier individual. In fact, it may not only affect the happiness of the individual who is identified to be at risk, even before acquiring the disease, but will also affect his family members who could fear the same fate. The goals of genetic screening and whether or not those goals can be met should therefore be properly delineated. Only then policy decisions can be made regarding genetic screening and its implementation. 5. Conclusion This paper discussed the ethical issues revolving around genetic screening and public policy. From the preceding discussion, it is apparent that genetic screening not only entails early diagnosis, prevention and better health outcomes, but also genetic discrimination and other ills. Ascertaining whether it should form a part of public health intervention is difficult, especially because it may be beneficial in some cases and damaging in other cases. It can thus be concluded that first, the goals of genetic screening should be defined and then judgment should be made whether the policies will achieve those goals or not. Moreover, merely establishing genetic screening will not be enough. Each and every disease entails different outcomes if its risk is predicted beforehand. Early prediction of cancer may be welcomed while early prediction of Huntington or Alzheimer may not. Thus, creation of public policies for genetic screening and adopting the technology on an individual or population wide basis requires vast amounts of research and assessment as to what a disease entails, what will be the implications of predictive diagnosis for a particular individual and his family, what are the expectations of the individuals, what is the best age and time for such screening, who has the right of decision making, who can have access to another individual’s genetic information, when can someone be allowed access to such information, etc. This requires combined investigations by biologists, geneticists, economists, sociologists, policy makers, educators, and the individuals themselves. Ethical issues are an integral part of any technological revolution. While there is nothing we can do to avoid the repercussion of applying a particular technology, we need to find ways in which the technology can be applied without ethical and moral afflictions. At the same time, it is important to realize that ethical and moral disagreements are bound to occur and will continue to occur under any circumstance. Keeping the well being of the society and individuals should always be a prerogative to any technological leap taken. Acceptance of a new technology is a gradual process and takes time. References “Genetic Testing”. (2006, May). Genetics and Public Policy Center. Retrieved from http://www.dnapolicy.org/science.gt.php. “Genetic Testing”. (2013, June 7). National Human Genome Research Institute. Retrieved from http://www.genome.gov/10002335. Atkin, K., & Ahmad, W. I. U. (1998). Genetic screening and haemoglobinopathies: Ethics, politics and practice. Social Science & Medicine, 46(3), 445-458. Ayme, S. (2003). 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