Table 1 Overview of the arguments for and against a right not to know and short outline of the problems with these arguments
From: Incidental findings of uncertain significance: To know or not to know - that is not the question
Con | Pro |
|---|---|
Hypothetical utilitarianism: The information will be important in the future. Problem: petitio principii | Avoiding harm: Being ignorant to avoid (psychological) harm of information. Problem: Information about IFUS is not knowledge. |
Rights-based arguments: Third party rights or interests override the rights of the individual. Problem: No defined third party rights or interests due to lack of accuracy and actionability | Argument for future flourishing (and liberty): Information about IFUS may reduce (future) flourishing and liberty. Problem: IFUS is not knowledge (and should not reduce flourishing) |
Arguments from (re)classification: It is not a right, but an interest, or not a basic right. Problem: Not relevant for IFUS | Autonomy based arguments: not knowing is exercising autonomy. Problem: IFUS does not provide knowledge. |
It is not feasible: It is not possible to exercise a right not to know. Problem: Irrelevant as there is nothing to know. | Privacy: there is a right to retain a private sphere without intrusion. Problem: It is not clear that providing IFUS data is an intrusion. |
Knowledge is a good thing in itself: A right not to know is a contradiction of this good. Problem: There is not knowledge. | Empirical arguments: People with accurate tests for severe diseases prefer not to be informed. Problem: reasoning from IS to OUGHT |
Argument from lost significance: A right not to know is not relevant in the age of genomics (with potential great benefit). Problem: petitio principio | Absence of duties: no duty not to inform, i.e., no right not to be informed. Problem: absence of a duty does not correspond with a right. |
Empirical argument: Most people want to be informed. Problem: reasoning from IS to OUGHT | The right to an open future: ignorance preserves the potential of open future choices. Problem: IFUS does not represent information that threatens an open future (formally). |
Argument from duty to disclose. Problem: counters primum non nocere, and that there is no knowledge to disclose | |
Argument from principle (of solidarity or) of avoiding harm (to others): not knowing, may harm others. Problem: no knowledge, no harm | |
Legal argument: Would not be litigated for giving vital information. Problem: IFUS is not vital information. |