J Bioethic Inq
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The disciplines of ethics, science, and the law often conflict when it comes to determining the limits and boundaries of embryo research. Under current Australian law and regulations, and in various other jurisdictions, research conducted on the embryo in vitro is permitted up until day fourteen, after which, the embryo must be destroyed. ⋯ This paper will highlight some of the tensions that exist in ethics, science, and the law in relation to the extension of the rule. It will be concluded that any move to extend the rule must be accompanied by close consultation with the public as the ultimate stakeholders in how the future of reproductive technology is created, constructed, and contested.
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Reflecting the dangers of irresponsible science and technology, Mary Shelley's Frankenstein quickly became a mythic story that still feels fresh and relevant in the twenty-first century. The unique framework of the Frankenstein myth has permeated the public discourse about science and knowledge, creating various misconceptions around and negative expectations for scientists and for scientific enterprises more generally. Using the Frankenstein myth as an imaginative tool, we interviewed twelve scientists to explore how this science narrative shapes their views and perceptions of science. ⋯ First, the Frankenstein myth may help scientists identify popular concerns about their work and offer a framework for constructing a more positive narrative. Second, finding optimistic science narratives may allow scientists to build a better relationship with the public. We argue that by showing the ethical principles and social dimensions of their work, scientists could replace a negative Frankenstein narrative with a more optimistic one.
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Vaccination is a highly effective public health strategy that provides protection to both individuals and communities from a range of infectious diseases. Governments monitor vaccination rates carefully, as widespread use of a vaccine within a population is required to extend protection to the general population through "herd immunity," which is important for protecting infants who are not yet fully vaccinated and others who are unable to undergo vaccination for medical or other reasons. Australia is unique in employing financial incentives to increase vaccination uptake, mainly in the form of various childcare payments and tax benefits linked to timely, age-appropriate vaccination. ⋯ This article examines the impact of coercive approaches to childhood vaccination and raises the question of the ethical justification of health policy initiatives based on coercion. We consider the current evidence regarding childhood vaccination in Australia, the small but real risks associated with vaccination, the ethical requirement for consent for medical procedures, and the potential social harms of targeting non-vaccinators. We conclude that the evidence does not support a move to an increasingly mandatory approach that could only be delivered through paternalistic, coercive clinical practices.
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Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms-particularly given their frequent lengthiness and complexity-provide participants with the tools and knowledge necessary for autonomous decision-making. ⋯ Multimedia strategies have the potential to usefully supplement current consent practices in Australia; however, information is needed about the need for supplementary consent practices, along with drivers for and barriers against adoption. This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, including researchers, HREC chairs and members, and research participants, including Indigenous participants.
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Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. ⋯ In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data diminish individual control, the synergistic effect of new data management models can in fact improve it.