Ethical Considerations in the Communication of Unexpected Information with Clinical Implications

“I want to know what's in Pandora's box”: Comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing

“…Options identified include: (a) Routine disclosure of IF with clear clinical utility, including early-onset and treatable conditions; [Berg et al, 2011;Mayer et al, 2011;Netzer et al, 2009]; (b) elective disclosure at the discretion of the patient for IF relating to untreatable conditions or disease carrier status; [Netzer et al, 2009;Berg et al, 2011]; and (c) non-disclosure of IF with no or unclear medical relevance, the rationale being that this would be a poor use of resources and may cause more harm than benefit [Berg et al, 2011]. Others have suggested that patients' evaluation of the personal utility of genetic information should inform IF disclosure in findings of unclear medical utility [Grosse and Khoury, 2006;Lavieri and Garner, 2006;Foster et al, 2009].…”

Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results

“…[1][2][3][4][5][6] Supporters of this obligation believe that disclosure honors the principle of respect for a person [3][4][5] and the reciprocal nature of a research relationship. 7,8 Invoking the principle of beneficence, many argue further that it is in participants' best interest to learn this information; 4 the common suggestion that results should meet some test of clinical significance (varying from clinical through personal utility) [4][5][6][7][8][9][10][11][12][13][14][15][16] to warrant reporting supports this point. Proponents find confirmation for their position in empiric research with research participants, many of whom believe that such information is owed 3,9,[17][18][19][20][21][22][23][24] and/or will have meaning in their lives.…”

Response to Open Peer Commentaries on “Disclosing Individual Genetic Results to Research Participants”: Defining Clinical Utility And Revisiting the Role of Relationships

“…Some warn that routinely offering individualized genetic results will impose untenable burdens on the research infrastructure and will result in sacrificing a "tremendous amount of research" (Ossorio 2006). Others acknowledge the cost of disclosure but argue that it should not be a mitigating consideration or a sufficient justification for restricting disclosure, because individual rights should not be forfeited for the benefit of society (Fernandez and Weijer 2006;Lavieri and Garner 2006).As the debate around disclosure of genetic individual results unfolds, the disagreement we describe becomes evident and the need to work together towards consensus becomes apparent. Much of the current research is aimed at producing information that would be relevant to people's well being.…”

“…Some warn that routinely offering individualized genetic results will impose untenable burdens on the research infrastructure and will result in sacrificing a "tremendous amount of research" (Ossorio 2006). Others acknowledge the cost of disclosure but argue that it should not be a mitigating consideration or a sufficient justification for restricting disclosure, because individual rights should not be forfeited for the benefit of society (Fernandez and Weijer 2006;Lavieri and Garner 2006).…”