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Medical Research Data-Sharing: The ‘Public Good’ and Vulnerable Groups in Books, added 01.03.2012

Harmon, SHE   Chen, K.

Medical Law Review   20 (4) 516-539

September 2012   (First published online April 2012)

http://medlaw.oxfordjournals.org/content/early/2012/04/11/medlaw.fws006.full.pdf+html

ABSTRACT

One of the moral tests of governments is how they treat those in the twilight of life (the elderly). As such, it is important not only to take care of the needs of the elderly, but also to place their reality in the forefront of deliberations and actions. Now that we are in the so-called century of biology, we must ensure that the newly transformed and increasingly relied on biosciences not only respond to the needs of the elderly but also reflect the reality of the elderly. While many arguments can be made in support of increased data-sharing in biomedical research (and indeed within and across healthcare systems more generally), there are some persuasive age-based arguments that might serve to encourage science regulators, through both funding structures and the law, to fundamentally reshape the research environment so as to enhance its potential to achieve public goods such as improved health and more effective healthcare systems. In this paper, after noting the new research model arising from population genomics, with its intense data needs, we advance three age-based arguments, in favour of increased and improved data-sharing, and we conclude with some brief observations about how increased data-sharing might be achieved.

Keywords:
regulation, medical research, aging, elderly, data-sharing, open science.