As health & medicine research on children continues to expand, in light of its benefits to scientific progress, the Hippocrates Med Review takes a step back to examine the ethics of this morally ambiguous phenomenon.  

Think about your little siblings, your nieces and nephews, your children, your friends’ and neighbors’ kids, and all the children you see all around… Think about the children who inhabit every aspect of our lives. Then visualize them in a lab, suddenly transformed from innocent youth to nondescript research subjects, assigned a number and undergoing tests for the sake of achieving research goals. How does that affect you? Do you think it would be justified for the greater good? In short, does benefit justify research with children?

Recently, attention has been called to pediatric research in health and medicine. The ethical quandary that arises is an issue of utmost importance, but also one of unclear answers and boundaries. On the one hand, it is evident that this research allows children to make valuable contributions to remarkable projects that could help thousands of future generations of children (or even adults) with health issues. On a biological level, the development of children’s bodies provides incomparable opportunities to dive into the origins of medical inquiries and observe how the human body grows and evolves. Clearly, the fascinating and consistent malleability that children are so uniquely endowed with offers knowledge like no other research model, and can answer some of medicine’s hardest questions. Thus, at the level of greater benefit to the expansion of the field and to society as a whole, such endeavors could be reasonably justified.

Furthermore, research could provide the children with moral education & development, which justifies their exposure to research risk – namely, teaching them lessons about altruism and doing certain things for the benefit of others, even if they involve a little pain, as well as taking pride in such contributions. Such lessons, in modern society, are considered vital, and it could be considered that involving children in such projects truly exposes them to altruism in a unique setting that will impress the idea upon their personalities. In general, such arguments seek to contextualize pediatric research in the framework of proposed benefit both to societal progress and the child’s own growth.

Nevertheless, from the perspective of the philosophy and ethics of risk, the dilemma remains controversial. While it can be said that such research may indeed have positive implications for medical advancement on a large scale, this cannot be ascertained beforehand, and more often than not may end up untrue. Furthermore, similar weaknesses can be found in the argument of ‘benefit to the child’ suggested in the form of ethical maturation and developing a grasp of ‘moral obligations’ and becoming disposed to being ‘good.’ There is evidently the fact that the child may, but not certainly will, acquire such lessons in the process. More importantly, alongside this uncertainty, a blatant philosophical fallacy arises in the thought process that helping the child become ‘good’ and fulfill their moral ‘duties’ is of benefit to the child. Such moral education, in the grand scheme of the situation, is realistically revealed upon reflection to be more of a benefit to society than to the child.

While this may seem counterintuitive, it is essential in such issues of the highest significance that one take a step back from the situation and objectively consider the reality – in truth, moral ‘goodness’ allows the individual to conform, and conformity serves more to maintain social order and benefit than to help the individual. Most notably, the central argument in opposition is that children cannot, in any way, provide informed consent to their participation in research. At such a young age, their knowledge is too limited to truly grasp the concept of the potential risks and benefits of the research, and realistically weigh these two aspects in order to make an educated choice about their involvement. As such, making children participate in such studies encroaches on their rights as human beings and individuals — regardless of their age and suggestibility. Denying them these rights could be akin to denying them acknowledgement of their free will.

In conclusion, a multi-faceted predicament of this complexity evidently requires further study and debate. This is a mare’s nest of grey areas and fuzzy boundaries, involving biological and health risks, ethical considerations, philosophical and moral plights, minors’ legal rights, and fundamental questions about what it truly means to be human and to have free will (especially in relation to age). In the end, the scientific and bioethical community must work hand-in-hand to come to a consensus on this issue. Who matters more – the child or the greater good? Who gets to decide?

References

Binik, Ariella. “Does Benefit Justify Research with Children?” Bioethics, 8 Sept. 2017, onlinelibrary.wiley.com/doi/10.1111/bioe.12385/full

Images

Baby’s incredible skull cap that seeks to unravel the mysteries of autism By DAILY MAIL REPORTER A baby boy took part in a brain study yesterday to help psychologists understand how autism develops. Web. http://www.dailymail.co.uk/news/article-1243081/Babys-incredible-skull-cap-seeks-unravel-mysteries-autism.html

Posted by Joe Rizkallah

Joe is a freshman studying Molecular & Cellular Biology. A member of HMR’s Medical Humanities team, he is interested in exploring the complex interface between sociocultural factors and clinical practice, as well as diverse topics relating to bioethics, medical philosophy and the nuanced boundaries between humanities and sciences (or lack thereof). He is also involved in numerous on-campus organizations, including Alpha Phi Omega and Refuel Our Future, and he is currently conducting research at the Viral Oncology lab of the Johns Hopkins medical campus. Outside of class, he enjoys swimming, badminton, and exploring the nooks and crannies of Baltimore.

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