Newborn Screening Samples as DNA Databanks

Birth is the only time of life when the government collects blood from virtually everyone. Some states discard these samples within a few months after birth, while others retain them indefinitely. In the past it was not possible to extract much information from these samples because most metabolites deteriorate quickly, but recent advances, particularly in DNA testing, have created new possibilities. Newborn samples can be used for DNA identification, for further investigation when a child subsequently becomes sick, or for research, for which they may be particularly attractive as a true population sample. However, all these uses are secondary to the purpose for which they were initially collected—to detect children with diseases that urgently require treatment.

The appropriateness of using these samples for these other purposes raises many of the questions that attend any use of stored tissue samples for research, including: (1) whether it is necessary to ask the donor (or in this case the parent) for permission; (2) when, if ever, it is appropriate to inform individuals of their personal results; and (3) what sort of review needs to occur before these samples can be used. The fact that these samples are typically obtained without parental knowledge or permission makes these issues that much more urgent, particularly in a society that is so deeply concerned about issues of genetic privacy. It would be rather ironic if a system of universal DNA identification were developed as a by-product of newborn screening rather than as a result of an explicit policy decision.

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