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Jan 9, 2024

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Personal Genome Mapping PHIL235 Lynn Karam 40171228 1 The topic of this paper is to discuss the case study of Personal Genome Mapping involving two identical twin sisters Samantha Schilit and Arielle Schilit Nitenson. Samantha, a researcher working on genome genetics desires to undergo whole genome mapping in order to figure out her own genetic makeup. However, her identical twin sister does not share the same interest as her, scared of being subject to several forms of discrimination because of the results of the sequencing, and would not like Samantha to go through with it. Nevertheless, Samantha underwent genome sequencing and she found out that she has a mutation that causes her problems when taking pain medications and delivery methods commonly used when in labor. A year later, when Arielle got pregnant, she benefited from the outcome of this genome sequencing since she shares the same genes with her sister regardless of her initial objection to Samantha’s initiative. As seen in the description of the case, several topics of concern arise when it comes to the ethical aspects of this case study and the main one is the issue of Arielle’s consent. Since they are identical twins, when it comes to genome sequencing, they become one person as they share the same genes. And in that case, Arielle’s consent should be taken into consideration especially that she is a competent person with valid arguments against her sister’s wish. However, if one is to consider this case study from a Consequentialist perspective, the matter of consent violation does not stand compared to the positive outcome of the genome sequencing which saved Arielle and her baby. In order to understand the consent violation that is happening in this case, we have to first define what informed consent is and then explain why it is considered a violation in this case. As per Faden and Beauchamp: “a n informed consent is an autonomous action by a subject or a patient that authorizes a professional either to involve the subject in research or to initiate a
Personal Genome Mapping PHIL235 Lynn Karam 40171228 2 medical plan for the patient (or both)” (p.47) 1 . Referring to this definition and looking at the facts provided in the case study which imply that the sisters share the same genome, it appears that Arielle’s consent was indeed required in that case. And since she did not give her sister consent to get her genome sequenced then this is considered a consent violation. Nevertheless, legally, this argument does not stand because as per Laura Herscher 2 , Samantha does not need to get her family members’ consent in order to have her genetic makeup examined. One can see that this case differs from other cases involving any family member because if Samantha did not have an identical twin and her genome sequencing revealed certain heritable diseases then this would indicate a possibility that her family members are at risk of carrying this gene as well. This case is not as urgent as when she had a monozygotic twin because they have the exact genes, and thus the genome sequencing done for Samantha was also done for Arielle and in that case, if it reveals any disease then definitely both of them carry it. Besides, the difference between the two sisters is that Samantha with her full knowledge of genetics science consented to have this done and Arielle did not. Moreover, Arielle raised the issue of having her medical information released to a third party as nowadays patients’ health records are kept electronically, thus multiple healthcare professional researchers and commercial enterprises can access this data. This explains Arielle’s concern of having her privacy violated as she and her sister will not have control over who has access to this information and what they can do with it. 3 1 Faden, R., Beauchamp, T L. The Concept of Informed Consent in Fisher, J., Rusell, J.S., Browne, A., Burkholder, L. in Biomedical ethics: A Canadian focus. (pp. 47-50). Don Mills, Ont: Oxford University Press. 2 Case 4 Personal Genome Mapping in Fisher, J., Rusell, J.S., Browne, A., Burkholder, L. in Biomedical ethics: A Canadian focus. (pp.156-158). Don Mills, Ont: Oxford University Press. 3 Kaplan, B How Should Health Data Be Used? Privacy, Secondary Use, and Big Data Salest in Fisher, J., Rusell, J.S., Browne, A., Burkholder, L. in Biomedical ethics: A Canadian focus. (Pp.134-147 ). Don Mills, Ont: Oxford University Press.
Personal Genome Mapping PHIL235 Lynn Karam 40171228 3 After having explained the potential ethical violations related to Samantha’s choice, her genome sequencing has some positive aspects that have to be taken into consideration as well. Since this genome sequencing revealed a mutation that the sisters share it helped save Arielle’s life as well as her newborn baby because if it weren’t for this discovery then she would have suffered after undergoing regular labor medication. If one is to consider this genome sequencing as a preventative method that was used to save two lives, then it had a positive outcome. Moreover, as per Tony Hope, we should consider statistic death which means that we should invest in rescuing measures that could prevent death in statistically significant ways and to treat relatively low-risk disease and provide preventive measures to limit the number of people who end up dying from complications due to hidden diseases 4 . This means that preventive health is important and will decrease the number of deaths from non-deadly diseases which was the case in Arielle’s labor story as her doctor was able to make special arrangements for her specific case. Furthermore, if one is to consider John Stuart Mill’s consequentialist philosophy, then there would be no debate on this case in the first place because according to him, what makes an action right or wrong is the consequences. In his principle of utility, he defines utility as a consequence of good action and the main goal of every action should be to promote happiness and what is intended by happiness, in that case, is the absence of pain 5 . Looking at the outcome of that case study, one can agree that it had a good outcome as two lives have been saved. 4 Hope, T. Why Undervaluing “Statistical” People Costs Lives in Fisher, J., Rusell, J.S., Browne, A., Burkholder, L. in Biomedical ethics: A Canadian focus. (pp. 377-382). Don Mills, Ont: Oxford University Press. 5 Morality and Moral Decision-Making in Fisher, J., Rusell, J.S., Browne, A., Burkholder, L. in Biomedical ethics: A Canadian focus. (pp. 9-. Don Mills, Ont: Oxford University Press.
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