Skip to main content
. 2012 Jun 27;21(3):248–255. doi: 10.1038/ejhg.2012.130

Table 1. : Arguments in favor of the disclosure of IFs, arguments opposed to disclosure and arguments that caution about disclosure, presented in the reviewed literature. The overall conclusion of the article regarding disclosure is also stated.

Author/s and date Reasons offered on the disclosure of IFs Conclusion of the article
Ali-Khan et al, 200911 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
  Caution: respecting the subject's autonomy against unwanted paternalism, except in unanticipated situations; implications for family members, the community and relevant population groups  
     
Botkin, 199516 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
     
Caulfield et al, 200822 Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention In favor of qualified disclosure, with more emphasis on favoring disclosure
  Caution: implications for family members, the community and relevant population groups  
     
Cho, 200817 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
  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  
  Caution: implications for family members, the community and relevant population groups  
     
Clayton, 200818 Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention Disclosure of future IFs should be done with caution
  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  
     
Hens et al, 201119 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
  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  
     
Kaye et al, 201012 Pro-disclosure: confirmed clinical utility and the possibility of treatment or prevention In favor of qualified disclosure
  Anti-disclosure: the subject's right not to know coupled with an IF that is not so serious, untreatable and/or of uncertain significance  
  Caution: implications for family members, the community and relevant population groups  
     
Kohane et al, 200613 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
     
McGuire et al, 200823 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
  Caution: implications for family members, the community and relevant population groups  
     
Parker and Majeske, 199520 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
     
Tabor and Cho, 200721 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
     
Van Ness, 20088 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
  Anti-disclosure: IFs discovered at an early stage of research  
     
Wachbroit, 19983 Anti-disclosure: when the accompanying anxiety and possible discrimination and stigmatization outweigh potential clinical utility In favor of qualified disclosure
  Caution: implications for family members, the community and relevant population groups, which may argue in favor of disclosure