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Academies of science call for amendments to impracticable Genetic Diagnostics Act
Date:11/10/2010

t. Propping summed up the findings of the Workgroup by saying, "The Act should protect individuals. But to do so, it must offer adequate responses to questions of clinical practice." He explained that the Act must be amended to deal with the following situations:

Example 1: Newborn screening

The Act defines newborn screening, which has proven successful for decades, as universal genetic screening. This means that parents must be advised on the test prior to the blood sample being taken from their child's heel. However, nurses and midwives are not authorised to give this advice only doctors are. There is increasing evidence that in the case of home births blood samples are frequently not taken and screenings not conducted, even though this is not actually in line with the parents' wishes. As a result it is not always possible to offer sick children proper treatment, even when it is urgently required. Therefore the Act must be amended to allow nurses and midwives to advise parents on the test.

Example 2: The family dimension

The Act places higher value on patient-doctor confidentiality than it does on a doctor's duty to provide care. For example, if tests show that an individual has a treatable, autosomal dominant hereditary disease for which a causative mutation has been identified, he or she is instructed to inform relatives that they may also risk developing the disease. After all, early diagnosis makes it easier to treat many illnesses, such as hereditary forms of breast cancer and intestinal cancer. However, doctors have no powers to check whether this information is passed on within the family or whether it is, perhaps even purposefully, withheld. With this in mind, the Act should not, as a rule, accord lower priority to a doctor's duty to provide care. Doctors should be in a position to assess individual cases and decide whether to inform family members in an appropriate manner of the risks of disease when there
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Contact: Dr. Kathrin Happe
politikberatung@leopoldina.org
49-345-472-39862
Leopoldina
Source:Eurekalert

Page: 1 2 3

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