| Popis: |
Given the established success of newborn screening programmes around the world, promoters of personalized medicine envision the possibility of extending genetic analysis to bloodspots routinely collected for newborn screening. Since most of the diseases already screened for are genetic, diagnosis would be more precise. Moreover, data thus collected would merge into the creation of a repository of genetic information accessible in case of future health-related needs. The appeal of such a plan poses a series of ethical challenges related to the peculiar nature of genetic information, the involvement of babies, and the blurred boundaries of such an enterprise that extends beyond prevention, to clinical practice and research. After reviewing the key elements of the practice of newborn screening, and the increased use of genetic testing of babies, the paper analyses UK policies as a test case, considering the ethical implications of consent, solidarity and the conflict of interests involved. It is demonstrated that some forms of ‘genetic expansion’ of newborn screening amount to genetic research on minors and, consequently, must follow well-established protocols. Such screening may also violate the established legal principle that parental consent is based on the child’s best interests. Other forms of accumulation of data cannot even account for research, thus lacking scientific justification. Whether or not whole-genome screening of babies may be a promising scientific pathway, it should not threaten clinical standards of childcare in the guise of expanding a well-established public health initiative for children, without proper and agreed justification. |
