Read: 283
Given the well-established success of newborn screening programs worldwide, proponents of personalized medicine envision expanding genetic analysis to include blood samples collected for routine newborn screenings. By doing so, they argue that diagnosis would become more precise due to most diseases being screened for being genetic in nature. Moreover, this data could form part of a repository of genetic information which can be accessed in case of future health-related needs.
The potential for such an initiative comes with numerous ethical challenges inherent to the unique nature of genetic information, the involvement of infants and the ambiguous boundaries that ext beyond prevention into clinical practice and research activities. This paper will review key elements of newborn screening practices as well as increased genetic testing of babies in this context before delving deeper into the analysis.
We first discuss the fundamental aspects surrounding newborn screening programs globally, highlighting their significant impact on public health initiatives for infants. We then move onto understanding the escalating use of genetic tests applied to baby populations. The paper will proceed by analyzing policies from a specific case study, namely the United Kingdom UK, as an illustrative example that scrutinizes ethical implications related to consent processes, solidarity considerations and potential conflicts of interests.
The text will reveal how certn forms of 'genetic expansion' in newborn screening can be categorized as genetic research involving minors. As such, they necessitate adherence to established guidelines already established for similar studies on children. We will also argue that this type of screening might violate the principle that parental consent is based primarily on the best interests of the child.
Furthermore, other forms of data accumulation don't justify legitimate scientific pursuits nor account for research purposes alone. Therefore, their applicability lacks a strong scientific foundation.
Regardless, whether whole-genome sequencing of babies could prove promising scientifically speaking, it should not undermine established standards of childcare in the guise of expanding an existing public health initiative without proper justification.
Keywords: newborn screening, whole-genome sequencing, personalized medicine - ethics, children - best interest, informed consent - parental
Subject Public Health Epidemiology
Collection: Oxford Scholarship Online
Margherita Brusa and Donna Dickenson contributed to this chapter on 'Personalized Medicine and Genetic Newborn Screening' in the edited work Can Precision Medicine Be Personal? Can Personalized Medicine Be Precise? by Yechiel Michael Barilan, Margherita Brusa, Aaron Ciechanover. Copyrighted 2022 by Oxford University Press.
This chapter explores the integration of genomic data into traditional newborn screening programs while considering ethical implications for infants and their families under a UK policy lens. By examining consent frameworks, potential conflicts of interest, and broader societal concerns, this piece provides insights on balancing the potential benefits with safeguarding vulnerable populations in personalized medicine initiatives.
You do not currently have access to this chapter without subscribing or purchasing through your institution.
To explore this chapter further:
Sign in through your institutional account
Purchase content online
Activate purchasetrial codes for personal accounts
Accessibility features are avlable for this chapter. Contact us for assistance with any barriers encountered in accessing our publications:
Oxford University Press supports institutional and library partnerships.
Explore how to publish journals or collaborate with academic presses.
Inquiries regarding copyright permissions should be directed here.
Visit the Oxford Academic hub for updates, announcements, and resources on publishing:
Oxfor d Languages
This is a department of the University of Oxford, dedicated to fostering excellence in research, scholarship, and education through global dissemination of knowledge.
Oxford University Press respects your privacy and manages cookies accordingly. For detled information regarding our cookie policy, please refer here.
To manage or request any other assistance:
We provide regular news updates on our website for stakeholders interested in new publications and collaborative opportunities.
If you're seeking to advertise with us or wish to connect with media representatives, you can reach out through the provided channels.
For inquiries about Oxford University Press as a scholarly publishing entity:
Oxford University Press is an autonomous division of the University of Oxford. It fulfills its mission by advancing academic excellence worldwide through publication activities.
Copyright ? 2024 Oxford University Press. Cookie settings: Cookie policy Privacy Policy Legal notice
Oxford University Press uses cookies to enhance your browsing experience on our website. If you continue without changing your settings, we'll assume that you are happy with this arrangement. For more information about our use of cookies and how to manage them see our Cookie Policy.
Reject cookies and manage permissions here
This article is reproduced from: https://academic.oup.com/book/41521/chapter/352955389
Please indicate when reprinting from: https://www.903r.com/Healthy_Baby/genetic_newborn_screening_uk_ethics.html
Personalized Medicine and Genetic Newborn Screening Ethics Expanding Genetic Tests in Routine Baby Checks UK Policy on Infants Genetic Information Storage Consent Issues for Minors in Genomic Studies Balancing Benefits with Vulnerable Populations Privacy Ethical Frameworks Surrounding Whole Genome Sequencing