Abstract
BackgroundThe use of genome-wide sequencing in pediatric medicine and research is growing exponentially. While this has many potential benefits, the normative and empirical literature has highlighted various ethical issues. There have not been, however, any systematic reviews of these issues. The aim of this systematic review is to determine systematically the spectrum of ethical issues that is raised for stakeholders in in pediatric genome-wide sequencing.MethodsA systematic review in PubMed and Google Books (publications in English or German between 2004 and 2021) was conducted. Further references were identified via reference screening. Data were analyzed and synthesized using qualitative content analysis. Ethical issues were defined as arising when a relevant normative principle is not adequately considered or when two principles come into conflict.ResultsOur literature search retrieved 3175 publications of which 143 were included in the analysis. Together these mentioned 106 ethical issues in pediatric genome-wide sequencing, categorized into five themes along the pediatric genome-wide sequencing lifecycle. Most ethical issues identified in relation to genome-wide sequencing typically reflect ethical issues that arise in general genetic testing, but they are often amplified by the increased quantity of data obtained, and associated uncertainties. The most frequently discussed ethical aspects concern the issue of unsolicited findings.ConclusionConcentration of the debate on unsolicited findings risks overlooking other ethical challenges. An overarching difficulty presents the terminological confusion: both with regard to both the test procedure/ the scope of analysis, as well as with the topic of unsolicited findings. It is important that the genetics and ethics communities together with other medical professions involved work jointly on specific case related guidelines to grant the maximum benefit for the care of the children, while preventing patient harm and disproportionate overload of clinicians and the healthcare system by the wealth of available options and economic incentives to increase testing.
Highlights
The use of genome-wide sequencing in pediatric medicine and research is growing exponentially
Most ethical issues identified in relation to genome-wide sequencing typically reflect ethical issues that arise in general genetic testing in children [80,81,82], but they are often amplified by the increased quantity of data obtained, and associated uncertainties
Issues frequently identified in this review include how much choice parents should be given regarding which findings they want to receive for their children; the risk to undermine the right not to know with an obligatory disclosure of unsolicited findings (UF); the challenge of interpreting and balancing the best interests of the child with the best interests of the family regarding the disclosure of UFs
Summary
The use of genome-wide sequencing in pediatric medicine and research is growing exponentially While this has many potential benefits, the normative and empirical literature has highlighted various ethical issues. In addition to the potential benefits of genome-wide sequencing in pediatrics, the empirical and normative literature has highlighted a number of important regulatory and ethical challenges [14,15,16,17,18,19,20,21,22,23,24]. Ethical challenges are commonly evaluated using the four Principles of Biomedical Ethics [27]: Beneficence, nonmaleficence, respect for autonomy, and justice
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