Ali-Khan et al, 200911
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Anti-disclosure: IFs discovered at an early stage of research; when the accompanying anxiety and possible discrimination and stigmatization outweigh potential clinical utility; potential information overload; increased time and staff expertise needed meaning that not all IFs can be analyzed and communicated; physical and psychological risks associated with IFs without clear and proximate importance discovered in minors, for example late-onset conditions and non-medical conditions |
In the context of whole genome sequencing, disclosure of IFs should be done with caution |
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Caution: respecting the subject's autonomy against unwanted paternalism, except in unanticipated situations; implications for family members, the community and relevant population groups |
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Botkin, 199516
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Caution: respecting the subject's autonomy against unwanted paternalism, except in unanticipated situations when beneficence as judged by the medical professional should come first |
Disclosure of IFs should be done with caution |
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Caulfield et al, 200822
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Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention |
In favor of qualified disclosure, with more emphasis on favoring disclosure |
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Caution: implications for family members, the community and relevant population groups |
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Cho, 200817
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Pro-disclosure: confirmed clinical utility and the existence of an effective intervention or prevention, for example information about susceptibility to environmental factors or reproductive information |
In favor of qualified disclosure |
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Anti-disclosure: unavailability of the necessary expertise to verify and assess IFs; ‘therapeutic misconception' lack of an ongoing relationship between researcher and research participant when future IFs are involved |
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Caution: implications for family members, the community and relevant population groups |
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Clayton, 200818
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Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention |
Disclosure of future IFs should be done with caution |
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Anti-disclosure: if research participants have not been prepared for the possibility of disclosure or the IF does not have grave consequences when future IFs are involved |
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Hens et al, 201119
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Pro-disclosure: serious and treatable, which can override parental wishes for non-disclosure |
In the context of minors, disclosure of IFs should be done with caution |
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Anti-disclosure: ‘therapeutic misconception' physical and psychological risks associated with IFs without clear and proximate importance discovered in minors, for example late-onset conditions and non-medical conditions |
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Kaye et al, 201012
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Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention |
In favor of qualified disclosure |
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Anti-disclosure: the subject's right not to know coupled with an IF that is not so serious, untreatable and/or of uncertain significance |
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Caution: implications for family members, the community and relevant population groups |
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Kohane et al, 200613
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Anti-disclosure: information overload and too high follow-up times and costs, discouraging new forms of genetic testing |
Disclosure of IFs should be done with caution, and the generation of IFs should be limited as much as possible |
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McGuire et al, 200823
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Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention, which can also argue for disclosure to family members and third parties, overriding the wishes of the original subject |
In favor of qualified disclosure, with special attention given to a family-centered approach |
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Caution: implications for family members, the community and relevant population groups |
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Parker and Majeske, 199520
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Caution: respecting the subject's autonomy against compulsory disclosure; implications for family members, the community and relevant population groups |
Disclosure of IFs should be done with caution |
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Tabor and Cho, 200721
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Anti-disclosure: IFs discovered at an early stage of research, because of the increased potential of harm; potential information overload |
Disclosure of IFs should be done with caution |
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Van Ness, 20088
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Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention |
In favor of qualified disclosure, especially in the early stages of genomic research |
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Anti-disclosure: IFs discovered at an early stage of research |
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Wachbroit, 19983
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Anti-disclosure: when the accompanying anxiety and possible discrimination and stigmatization outweigh potential clinical utility |
In favor of qualified disclosure |
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Caution: implications for family members, the community and relevant population groups, which may argue in favor of disclosure |
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