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The Merits of Genetic Screening Beyond the Fear of Malfeasance

DO NOT COPY, WILL BE FLAGGED! Thursday, February 11, 2021 BIOL 4080 - Winter 2021

Today with fast and affordable mass screening of the whole genome, the debate surrounding genetic testing and screening has gained attention with regards to the ethical, legal and social implications (Ross, 2013; Skene & Thompson, 2008). It has been determined by Grosse et al. (2010) that although genetic screening guidelines are frequently determined by scientific capabilities, advocacy, and medical opinions as opposed to a rigorous evidence-based review process, decision making should take into account the principles of ethical and economic perspectives (Grosse et al., 2010). There is a great deal of discomfort regarding how far we should go in applying these technologies, including: Who has the right to decide the child’s future and will this cause imbalances within societies? That being said, this technology offers parents the opportunity to make decisions on their own future as well as the wellbeing of their future children. It also provides the possibility of a future where fewer people suffer from debilitating disabilities. With the aforementioned benefits in mind, genetic screening should be used routinely as part of prenatal care to ensure genetically healthy babies. The World Health Organization defines genetic screening as: ‘tests offered to a population group to identify asymptomatic people at an increased risk from a particular adverse outcome’ (Sleeboom-Faulkner, 2007). A subsection of this diagnostic test is prenatal diagnosis (PND), which is a practice used as a way to inform future parents who are at an increased risk of having a child with a genetic disorder about the condition of a fetus or embryo (Skene & Thompson, 2008; Sleeboom-Faulkner, 2007). The diagnosis may lead them to decide either to terminate the pregnancy or to prepare for the birth of a child with a disability (as a form of reproductive autonomy, as having the power to decide and control contraceptive use, pregnancy, and childbearing) (Lippman et al., 1991; Skene & Thompson, 2008; Sleeboom-Faulkner, 2007). Factors such as: a family history that includes heritable medical conditions; being a carrier of

mutations; abnormal ultrasound or first and second trimester screening test results, or a previous child affected by a serious developmental or health problem or advanced maternal age may lead someone to peruse such a diagnosis (Skene & Thompson, 2008; Sleeboom-Faulkner, 2007). Although this opportunity for awareness is seemingly straightforward, this raises numerous context-related ethical dilemmas. In a reproductive autonomy model, prenatal diagnosis is presented as a means of allowing people the opportunities for meaningful reproductive choice and thus expand their freedom of choice (De Jong et al., 2011; Munthe, 2017; Lippman et al., 1991). Post-enlightenment thought, a form of humanism, which postulates ideas of individualism, choice and liberation and maintains that individuals are in pursuit of their own ends (Atkin & Ahmad, 1998). People, therefore, have control over their own lives and require information to make informed decisions, enabling them to recognise their own aspirations (Atkin & Ahmad, 1998). Parental screening cannot be disconnected from this school of thought as it emphasises the availability of genetic information to enable informed decision making on the part of potential carriers (Atkin & Ahmad, 1998; Lippman et al., 1991). Choices such as the right to a safe abortion and post-termination support as well as support for the child who could be born with disabilities need to be supported (Skene & Thompson, 2008). Although individual, societal and psychological differences underlie these choices, the most effective way to employ decision-theoretic consequentialism (weighing theoretical pros and cons) is by adopting the standard of twin principles of beneficence and nonmaleficence through informed consent (De Jong et al., 2011; Lippman et al., 1991; Skene & Thompson, 2008). The conversation of a choice being made must not go without the consideration of who the decision is being made for (Ross, 2013). The American College of Medical Genetics (ACMG) statement (1995), the American Academy of Pediatrics (AAP) statement on the genetic

testing of children (2001) and the new United Kingdom (UK) guidelines by the British Society of Human Genetics (BSHG) (2010) all state that genetic testing as well as genetic screening should be done if it is in the child’s best interest (Ross, 2013). Allen Buchanan and Dan Brock (2002) in addition to Tom Beauchamp and James Childress (1993) describe ‘best interest’ as maximizing the patient’s good through a comparative assessment that locates the highest net benefit. However, Beauchamp and Childress (1993) state that ‘best interest’ “appeals indirectly to those autonomy considerations insofar as they provide a basis for understanding welfare and interpreting interests” (Ross, 2013). Therefore, the child’s medical interests must be regarded as fundamental, but one must balance the child’s other needs and interests in addition to the needs and interests of the family (Holm, 2002). The significance of parental input is consistent with Article 3(1) in the Children’s Act 1989 which describes ‘parental responsibility’ as “the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property” (Ross, 2013). Ronald Green (1977) states that the ‘lives of future people ought ideally to be ‘‘better’’ than our own and certainly no worse.’ which suggests that we are obligated to make use of genetic technologies to improve the opportunities to future generations (Skene & Thompson, 2008). Buchanan, Brock, Daniels and Wikler (2005) have maintained that genetic interventions to prevent disabilities are obligatory on the basis of justice and the duty to prevent harm; and that genetic enhancements are permissible when they are pursued within certain constraints of liberal justice. The "public health" model describes prenatal diagnosis as a way to reduce the frequency of selected birth defects in the general populous (Munthe, 2017; Lippman et al., 1991). On a societal level, prenatal screening can also be seen as a matter of cost-effectiveness (De Jong et al., 2011). Certain serious disabilities, result in high costs for society (in the form of taxes), and the detection of such leads to, in most cases, a termination of pregnancy (De Jong et al., 2011). Thus,

it is reasonable to have public funding cover prenatal testing for disorders that have a substantial influence on the lives of children and families (De Jong et al., 2011). This is the case in Canada where there is no direct financial charge for prenatal diagnosis (Lippman et al., 1991). This may lead to greater considerations that are relevant from a public health perspective (De Jong et al., 2011). As prenatal screening becomes routinised, the social norm might generate a social pressure to test and thus normalize of the termination of affected pregnancies (Kater-Kuipers et al., 2018). Thus, a concern that arises from genome-wide molecular testing is the 'anticipatory autonomy rights' of the future child because it robs the individual of their right to selfdetermination or violates the principle of respect for persons (De Jong et al., 2011). The predominant opinion, which is also reflected in legislation allowing abortion up to a certain limit, is that the moral status of the fetus is somewhat low and increases as it develops (De Jong et al., 2011). This mindset is commonly more accepting of abortion as justified if the parents want to avoid having a child with a serious disease or disability (De Jong et al., 2011). That being said, there is no consensus on how much weight to give a child’s present or future interests and how much weight to give parental interests in raising their child according to their personal values (Ross, 2013). The American Medical Association (AMA) proposes a standard of ‘reasonableness’ which proposes that to ensure a decision using the aforementioned best interest standard is not improperly influenced by the parent’s own values is to identify the method of treatment that the majority of reasonable people would choose for themselves if they were in similar circumstances (Ross, 2013). Helen Reece, a British legal scholar explains: “while everybody agrees that children’s welfare should be paramount, nobody knows what children’s welfare demands” (Ross, 2013).

A major concern for the future of parental screening is the potential for an uneven distribution of genes (Lippman et al., 1991; Skene & Thompson, 2008). For example, in Africa, the preference for male child is a prevailing tradition embedded in inheritance practice and patriarchy (Jegede, 2009). This introduces the concern of "eugenics" or "new genetics" (Atkin & Ahmad, 1998; Lippman et al., 1991; Skene & Thompson, 2008). Bradby (1996), maintains that identification of genetic conditions cannot be dissociated from the prior racist practices experienced by minority groups (Atkin & Ahmad, 1998). According to the 'disability rights’ critique, prenatal screening implies that circumstances would be better if those living with the screened conditions had not been born (De Jong et al., 2011; Skene & Thompson, 2008). Screening for a select few disabilities may emphasize the criticism that prenatal screening suggests that certain groups of people are not welcome in society (De Jong et al., 2011). This may lead to negative consequences for the existing group of people with disabilities, including discrimination or lower quality healthcare (Kater-Kuipers et al., 2018). However, if prenatal screening is employed for a broad array of conditions, no groups will find themselves explicitly targeted (De Jong et al., 2011). If informed decisions as opposed to abortion rates are indicators of success, the disability rights critique is less substantial (De Jong et al., 2011).

It is undeniable that the prospect of selecting desirable characteristics of future generations prompts a certain level of discomfort. Although we cannot know whether the decisions we make today will truly be in the best interest of future generations, or whether they will cause even more social imbalances than what we have now, people have the opportunity to make decisions that they interoperate as the best that can be done for the future of themselves, their children and the well-being of future generations.

References

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