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@BOOK{Jungkunz:286228,
      author       = {M. Jungkunz$^*$ and K. Cornelius and C. Schickhardt$^*$ and
                      N. Dikow and E. Winkler and B. Brors$^*$ and S.
                      Fröhling$^*$ and K. Greulich-Bode$^*$ and I. Idler and P.
                      Lichter$^*$ and T. Milde$^*$ and S. Pfister$^*$ and C.
                      Schaaf and S. Wiemann$^*$},
      title        = {{P}osition paper on the return of additional genetic
                      findings in minors},
      address      = {Heidelberg, Deutschland},
      publisher    = {Forum Marsilius-Kolleg, NCT},
      reportid     = {DKFZ-2023-02726},
      pages        = {130 pages},
      year         = {2023},
      note         = {Forum Marsilius-Kolleg, Bd. 23 (2023): Stellungnahme zur
                      Rückmeldung genetischer Zusatzbefunde Minderjähriger
                      Heidelberg : Forum Marsilius-Kolleg Veröffentlicht
                      2023-10-30 / [10.11588/FMK.2023.23.100566]},
      abstract     = {In modern medicine, particularly in the fields of oncology
                      and rare diseases, genetic diagnostics has become
                      increasingly important in recent years. Steady progress in
                      sequencing technology and consequently decreasing costs now
                      allow exploratory testing using large gene panels and even
                      whole genome sequencing. These methods offer great potential
                      for more refined and faster diagnosis. At the same time,
                      however, the large amount of data generated increases the
                      likelihood that, in addition to the primary health-related
                      information sought (primary findings), other genetic changes
                      relevant to future health will be discovered (additional
                      findings). Dealing with additional genetic findings always
                      poses a challenge when carrying out the informed consent
                      process prior to genetic testing. This applies, in
                      particular, to additional genetic findings in minors, since
                      in this case the parents or other legal guardians make the
                      decision regarding the handling of additional genetic
                      findings on behalf of those minors. Such proxy decisions
                      pose a particular ethical challenge if the implications of
                      this decision become relevant only in the child's adulthood,
                      e.g., when a predisposition to a late-onset disease is
                      identified. Thus far, no general recommendations on
                      guidelines for an adequate informed consent process
                      regarding the return of additional genetic findings in
                      minors have been developed. With the present statement, the
                      Heidelberg Group EURAT aims to close this gap and provide
                      recommendations for the handling of additional genetic
                      findings in minors. These recommendations are based on
                      detailed legal and ethical analyses and explicitly address
                      establishing an adequate informed consent process that
                      attempts to minimize the likelihood of potential conflicts
                      when returning additional genetic findings in minors. In
                      addition to the recommendations, the EURAT Group provides an
                      information brochure, as well as text modules for the
                      informed consent process regarding the handling of
                      additional genetic findings in minors.},
      organization  = {Projektgruppe EURAT Ethische und
                       rechtliche Aspekte der Translationalen
                       Medizin,},
      cin          = {D120 / B330 / B340 / M100 / B060 / B310 / B062 / HD01 /
                      B050},
      cid          = {I:(DE-He78)D120-20160331 / I:(DE-He78)B330-20160331 /
                      I:(DE-He78)B340-20160331 / I:(DE-He78)M100-20160331 /
                      I:(DE-He78)B060-20160331 / I:(DE-He78)B310-20160331 /
                      I:(DE-He78)B062-20160331 / I:(DE-He78)HD01-20160331 /
                      I:(DE-He78)B050-20160331},
      pnm          = {314 - Immunologie und Krebs (POF4-314)},
      pid          = {G:(DE-HGF)POF4-314},
      typ          = {PUB:(DE-HGF)3 / PUB:(DE-HGF)26},
      doi          = {10.11588/FMK.2023.23.100566},
      url          = {https://inrepo02.dkfz.de/record/286228},
}