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Informed Consent Issues Regarding Storage and Use of Newborn Blood Spots

  • While newborn screening has been accepted by most as an invaluable part of our public health system, there still remain a number of lingering questions regarding the use and storage of the remaining bloodspots after the screen has taken place. Dr. Lewis R. First has raised some important questions related to the storage and use of newborn screening bloodspots and what we still need to learn on the American Academy of Pediatrics Blog called Newborn Screening Samples: What Happens to Them After You Get the Results?

    “Newborn bloodspot screening plays a critical role in the identification of a myriad of genetic disorders, allowing us to intervene with appropriate management so complications do not ensue. Yet, what happens in state labs once the results have been reported? Those bloodspots may be saved and in turn used for quality assurance testing in a lab, biomedical research and even forensic applications. Did you know that? Should parents consent to the use of the screen for such additional purposes? Botkin et al. (doi: 10.1542/peds.2011-0970) address this latter question in a fascinating study whereby he and his colleagues surveyed more than 3,800 public respondents regarding policies and practices relevant to the retention and use of newborn screening materials. The concept of an “opt-in” consent process is raised and what the public thinks of using such a process will make you consider whether you should do something similar with parents of your newborn patients.

    Complementing this study is an additional one by Bombard et al. (doi: 10.1542/peds.2011-2572) who also surveyed the public in eight focus groups in Canada regarding storage of samples and parental choice to use them for further research. The investigators found that the public identified benefits as well as risks of simply allowing this to occur without parental consent. Both studies call for more public education on the risks and benefits of secondary uses of newborn bloodspots. While these articles were in press, we learned of the recent State Supreme Court decision in Minnesota to prohibit the use of newborn screening for other purposes than that of screening the baby - unless informed consent has been provided for other uses of the screen Bearder versus Minnesota from the Newborn Screening Coalition website (Leight and Chrysler: November 22, 2011). This is the first time such statewide decision making appears to have occurred based on the thought that genetic information is inseparable from one’s DNA, and thus a screen belongs only to the owner of that sample.

    When we find an issue like this one that has not gotten the public attention it might deserve, we also invite comment. Therrell and Hannon (doi: 10.1542/peds.2011-3416) share with us their thoughts on these two studies as well as this issue in an accompanying commentary. What’s your opinion on a parent’s need to know about and in turn consent to storage and future use of the newborn bloodspot for research? Feel free to share your thoughts in our e-letter column or on our Facebook page once you have read all three interesting articles.”

    What are your thoughts on parental consent related to the storage and use of bloodspots? Do more studies need to be done?  Leave your comments here or on the American Academy of Pediatrics Facebook page!

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