Academic Review 2024

49 ACADEMIC REVIEW 2024

Ethical concerns Incidental finding is another barrier associated with increased usage of personalised medicine. ‘In Western cohorts, the prevalence of incidental findings (IFs) or incidentalome, referring to variants in genes that are unrelated to the patient’s primary condition, is between 0.86% and 8.8%’ (Jamuar, Kuan, Brett, & al, 2016). Many argue that it is unethical if, while analysing a patient’s genome and searching for susceptibility to a certain disease, a different, unrelated disease is found that has no current treatment options available. This may have a large impact on the patient’s life and mental health. Therefore, incidental findings can be seen as a major issue and it often raises the question as to how the results of these tests should be shared with the patient. In an attempt to decrease the number of incidental findings, the European Society of Human Genetics has suggested the use of focused genomic tests rather than whole genome sequencing. However, it is possible to argue that it is unethical to purposely attempt to avoid a diagnosis, as patients have a right to know this information. If patients are suffering from a certain disease, even if it is terminal, patients must be allowed to be provided with treatment or make decisions regarding palliative care. Due to the continuous decline in the cost of personalised medicine and further implementation of genomics in healthcare, incidental findings may become a much more widespread issue, but currently, ‘the cumulative prevalence of IFs through genomic sequencing is low and the incidentalome may not be a significant barrier to implementation of genomics for personalized medicine’ (Jamuar, Kuan, Brett, & al, 2016). Another major ethical concern is the relationship that can be drawn between personalised medicine and eugenics. ‘Eugenics, according to the “father of eugenics” Francis Galton is the science which deals

with all influences that improve the inborn qualities of a race’ (Stillwell, 2012). Sir Francis Galton gained that title as he is said to be the first to experiment with eugenics and had a eugenics programme which aimed to produce a better human race through controlling reproduction. Although, it may seem as though eugenics and personalised medicine have no connection, many argue that there are many similarities which can be identified. Dayna Bowen Matthew claims that, eugenics, and personalised medicine both rely on the fact that a further, more advanced understanding of genetics will not only improve our healthcare, but also better society overall. ‘The prospect of using patients’ genetic information to better predict and prevent disease could easily travel down the slippery slope toward eugenics’ (Matthew, 2019). In other words, a greater understanding of genomics and further implementation of personalised medicine may give rise to the opportunity for eugenics. For instance, during in-vitro fertilisation, a mother who carries a genetic condition will have her potential embryos screened for the presence of the mutated allele, so that embryos without the genetic defect are implanted. Some may argue that this is a form of eugenics, and it is difficult to draw the line between limiting harm and altering natural evolution. Both personalised medicine and eugenics are looking for ways to distinguish patients on the basis of genetic characteristics. Although the relationship may not be clear on the surface, many argue that, despite the countless benefits, the further pursuit of personalised medicine is unethical, and that we cannot risk becoming a society which incorporates eugenics. The relatively blurry line between the application of genomics in healthcare and the exploitation of similar methods to achieve an improved genetic makeup, severely restricts the potential of genetic manipulation in healthcare.

“ The prospect of using patients’ genetic information to better predict and prevent disease could easily travel down the slippery slope toward eugenics ”