Infant Blood

   Newborn screening in the US is essential for early detection of genetic disorders, typically conducted through a simple blood test before infants leave the hospital. However, ethical concerns arise regarding the retention and use of these dried blood spot (DBS) samples after screening. While DBS samples are sent to state labs for comprehensive screening, identifying conditions like phenylketonuria (PKU) and congenital cytomegalovirus (cCMV) for timely interventions, questions linger about what happens to these samples afterward.

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   Dr. Robert Guthrie's groundbreaking work in the 1960s laid the foundation for newborn screening, which has expanded with technological advancements. Retained DBS samples are crucial for ongoing research, contributing to the development of new screening tests and public health studies. However, concerns over the long-term retention and secondary use of DBS samples have raised privacy and ethical considerations.

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   Privacy concerns escalate with the possibility of DNA extraction and genomic sequencing from DBS samples, leading to fears of potential discrimination and misuse of genetic information. Recent controversies, including instances of DBS samples being used in law enforcement, highlight the importance of informed consent and transparent practices regarding the handling of these samples.

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   Legal battles, such as those in Texas and Minnesota, have resulted in policy changes recognizing privacy rights and enforcing transparent DBS practices for both public health and individual privacy protection. Striking a balance between public health objectives and individual privacy rights remains a challenge for policymakers. Standardized consent processes, transparency, and public education are essential for fostering trust and ensuring responsible use of DBS samples in biomedical research. As technology advances, ongoing dialogue and adaptation of policies are crucial to address evolving ethical concerns surrounding newborn screening practices.

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Lewis, Michelle Huckaby at al., “Research Results: Preventing Newborn Blood

Samples”. (PubMed Central), (November 7, 2012) Accessed March 31,

2024. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3763707/

 

Hughes IV, Richard H at al., “Newborn Screening Blood Spot Retention and Reuse: 

A Clash Of Public Health and Privacy Interests”. (Health Affairs),

(October 5, 2022) Accessed March 31, 2024. https://www.healthaffairs.org/

content/forefront/newborn-Screening-blood-spot-retention-and-reuse-clash-public-health-and-privacy

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Author, No, “Blood Collection: Babies and Children”. (Henry Ford Health), (July 12, 2023) Accessed

March 31, 2024. https://lug.hfhs.org/babiesKids.html