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Just as TV advertising sits within a proportionate regulatory framework, so too must the use of personal data.
"The most appropriate and proportionate regulatory action in these circumstances is to get written legal assurance from Google that this will not happen again".
"The most appropriate and proportionate regulatory action in these circumstances is to get written legal assurance from Google that this will not happen again," the commissioner, Christopher Graham, said in a statement.
These solutions also tend not to be robust enough to adequately address issues related to data sharing that matter to participant-patients and researchers, namely privacy, anti-discrimination and fair access, and proportionate regulatory treatment of research projects.
So how can we work toward a translational, transnational genome science that is cognizant of the need to incentivize data producers to share, to afford researchers proportionate regulatory treatment of research projects, and to address possible patient-participant concerns about the impact of data sharing on privacy, anti-discrimination, and fair access?
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A internal document from June, seen by Greenpeace and shared with the Guardian, says the agency will "make more proportionate use of our regulatory powers" and "retain our regulatory powers but will use them more proportionately and more efficiently, while increasingly operating through advice and partnership".
Our advice … is that the safety alert and maintenance programme Whirlpool has in place is proportionate and meets legal and regulatory requirements.
Self-regulatory instruments and proportionate governance mechanisms like codes of conduct can be human rights attuned and offer privacy protection.
Regulatory controls imposed should be proportionate to the risk of harm to individual or public health.
Embryos must have highly redundant regulatory systems to ensure that a perfectly proportionate animal is produced time after time.
As the clinical data emerges, the challenge of making these therapies available to patients shifts to implementing robust, scalable and cost-effective manufacture and to the further evolution of the regulatory requirements to ensure an appropriate but proportionate system that is adapted to the characteristics of these innovative new medicines.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com