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Privacy and data protection
Published in Eduard Fosch-Villaronga, Robots, Healthcare, and the Law, 2019
The mechanism of achieving consent for the use of robotic assistance could be tailored to enhance understanding and the exercise of autonomy by the care receiver and to achieve an optimal level of transparency and accuracy. A two-phase model of consent could be conceived here: It would be initially the responsibility of the service provider to facilitate the user’s consent to the use of the robot as healthcare aid, including its most important data protection aspects. However, once the robot has been accepted as healthcare aid and is in use, it might be possible to have the robot initiate conversations about consent with users, provide further information, and implement the ongoing consent process for any emerging changes. With the increasing availability of sophisticated conversational interfaces, these options become increasingly attractive. Current information and consent facilitation by the robot would constitute a form of dynamic consent (Kaye et al., 2015; Williams et al., 2015; Budin-Ljøsne et al., 2017), allowing users to be kept abreast of relevant developments, but also to manage their privacy preferences in a time-sensitive manner, in short, to enhance their opportunities to exercise informational autonomy. However, limitations of the robot’s ability to facilitate such communications need to be kept in mind, and the option to engage in ongoing consent conversations with the service provider should always be available.
Gene drive and RNAi technologies: a bio-cultural review of next-generation tools for pest wasp management in New Zealand
Published in Journal of the Royal Society of New Zealand, 2022
Symon Palmer, Peter K. Dearden, Ocean R. Mercier, Alan King-Hunt, Phillip J. Lester
The challenges in ethically developing and governing emerging technologies like gene drives are recognised globally. In North America, George et al. (2019) argue for the utilisation of ‘free prior and informed’ consent for synthetic biology ethical discussions. An approach suggested by Australian academic Dryzek et al. (2020) is to host a global citizen forum where participants representing a wide aspect of society attend a forum where they engage with the technical, ethical and social aspects associated with these genetic editing technologies. Garrison et al. (2020) applies ‘dynamic consent’ to genomic research, allowing the ongoing revision of consent to genetic research. Locally, discourse regarding novel biotechnologies and ethics references a social licence to operate (SLO) (Edwards et al. 2019; Kirk et al. 2019; Dearden et al. 2018; Mercier et al. 2019). SLO began in controversial industries such as mining (Moffat and Zhang 2014), making it a convenient starting point to mirror dialogue on potentially contentious topics like biotechnologies. Ogilvie et al. (2019) demonstrate how SLO can facilitate conversation on complex issues like unmanned aerial vehicles in biosecurity by adapting the concept to an activity used in interviews called an ‘SLO spectrum’. However, consent and SLO mechanisms must be applied in ways that are consistent with Treaty principles (Ruckstuhl et al. 2014) and enhance rangatiratanga (self-determination) (Palmer et al. 2020).
Surveillance in Next-Generation Personalized Healthcare: Science and Ethics of Data Analytics in Healthcare
Published in The New Bioethics, 2021
Next-generation sequencing (NGS) has introduced several opportunities for using genomic information in both research and clinical practice. However, the use of NGS brings forth several complicated challenges associated with privacy and informed consent. At the primary level, obtaining informed consent from genomic study participants is critical (Meller 2015). For many researchers, using a broad consent process whereby participants are informed of the general risks of participating in the research is enough in ensuring that the participant is aware of the risks. However, this does not protect the participant’s autonomy. Researchers should use a more dynamic consent process that ensures that research participants are informed of all the risks, including future ones (Kaye et al. 2015). Lastly, guidelines should be developed to ensure that patients remain unidentified in re-identification studies.