The results thus lack detailed information that may inform disclosure interventions (Dima, Stutterheim, Lyimo, & de Bruin, 2014; Kennedy, Fonner, Armstrong, O'Reilly, & Sweat, 2015).
These continuing debates testify to the diversity of opinions among both clinical and basic health science researchers – herein referred to as investigators – and reinforce the essential role that context imparts on the ethical analyses used to inform disclosure decisions.
It is within the government's bailiwick to make sure that consumers are well informed, that disclosure of fees and risks is robust, and that unfair or deceptive practices are banned.
In terms of organisations requesting information about individuals from a data controller, the ICO stipulates that the individuals should be informed of disclosure, but it does not stipulate that written consent is required to pass on contact details.
For the purposes of this study I have focussed my investigation on evaluating the quality of informed consent practices by medical doctors in public hospitals in South Africa, while taking into consideration the various key elements of informed consent, such as information disclosure, competence, voluntariness and comprehension by patients.
These factors have been suggested and have been in use informally by data custodians to inform their disclosure decisions for at least the last decade and a half [ 46, 66], and they cover three dimensions [ 67], as follows.
These results should inform the further development of information disclosure laws.
Additionally, both protocols are investigating participants' intentions towards receiving different types of results in order to inform the disclosure policies within the projects and in the broader community [ 16].
The complex and nuanced picture of attitudes to receiving unsolicited genetic information demonstrated here complicate any effort to produce a single set of guidelines to inform when disclosure to at-risk family members should occur.
