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Essay On Informed Consent

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Should Informed Consent be required for Genetic Testing on Newborns? The Dilemma Should informed consent be required for genetic testing on newborns? Informed consent is defined as “voluntary agreement given by a person or a patients’ responsible proxy (for example, a parent) for participation in a study, immunization program, treatment regimen, invasive procedure, etc., after being informed of the purpose, methods, procedures, benefits, and risks”. (Farlex Partner Medical Dictionary, 2012) With few exceptions every child born in the United States has a mandatory Newborn Blood Screening (NBS) done within the first forty-eight hours of life. There is no requirement to communicate with parents about the screening test, and/or to ask for permission …show more content…

Parents at very least deserve to be informed of medical procedures performed on their child and the possible results from said procedures. There is no other medical procedure where informed consent is not required prior to taking place. People may refuse, but at the very least they are given the information with that right. The mandatory function of NBS combined with the requirement to have information without any requirement to distribute that information has caused a lack in people knowing anything about the tests that are being performed. In 2009, the Consumer Task Force on Newborn Screening of the Genetic Alliance, a consumer advocacy organization, conducted a survey of 2,266 women age 18-45 regarding their attitudes on various issues relevant to newborn screening. Two conclusions were made by this study; first these women need and want more information about newborn screening and second, they want this information before their baby is born (Anderson, Rebecca, Rothwell, & Botkin,

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