Definition of the problem <p>Newborn screening is an effective measure for the early detection of rare diseases. The program currently identifies an average of one newborn out of 900 births in Germany that is affected by one of the target diseases. In the future, supplementing the measure with genomic screening would make it possible to identify those affected by numerous rare genetic conditions that can be treated and have not yet been included in established screening by expanding the catalogue of target diseases. Many moral issues are raised by genomic newborn screening.</p> Arguments <p>The paper offers an ethical assessment of genomic newborn screening as a&#xa0;public health measure based on the principlist approach in biomedical ethics as advocated by Tom Beauchamp and James Childress. The principles of respect for autonomy, nonmaleficence, beneficence as well as the principle of justice are specified with regard to genomic sequencing and balanced, drawing also on work of Norman Daniels on justice in health care.</p> Conclusion <p>The specification of relevant norms allows the formulation of requirements for responsible genomic newborn screening and the selection of target diseases. Furthermore, the strategic significance and long-term potential of genomic newborn screening lie primarily in its function as a&#xa0;building block of personalized medicine. With this perspective and the requirement of justifying allocation decisions, society needs to address important issues in the ethics of public health. These issues call for democratic deliberation and transparent decision-making processes.</p>

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Genomisches Neugeborenenscreening: Eine Bewertung auf der Grundlage der prinzipienorientierten Ethik

  • Tatjana Tarkian

摘要

Definition of the problem

Newborn screening is an effective measure for the early detection of rare diseases. The program currently identifies an average of one newborn out of 900 births in Germany that is affected by one of the target diseases. In the future, supplementing the measure with genomic screening would make it possible to identify those affected by numerous rare genetic conditions that can be treated and have not yet been included in established screening by expanding the catalogue of target diseases. Many moral issues are raised by genomic newborn screening.

Arguments

The paper offers an ethical assessment of genomic newborn screening as a public health measure based on the principlist approach in biomedical ethics as advocated by Tom Beauchamp and James Childress. The principles of respect for autonomy, nonmaleficence, beneficence as well as the principle of justice are specified with regard to genomic sequencing and balanced, drawing also on work of Norman Daniels on justice in health care.

Conclusion

The specification of relevant norms allows the formulation of requirements for responsible genomic newborn screening and the selection of target diseases. Furthermore, the strategic significance and long-term potential of genomic newborn screening lie primarily in its function as a building block of personalized medicine. With this perspective and the requirement of justifying allocation decisions, society needs to address important issues in the ethics of public health. These issues call for democratic deliberation and transparent decision-making processes.