Ethics, The Social Sciences, and Policy Analysis (The Hastings Center Series in Ethics)

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Long-acting and reversible contraceptives, such as Norplant and Depo-Provera, have been praised as highly effective, moderately priced, and generally safe. Yet, as this book argues, the very qualities that make these contraceptives an important alternative for individual choice in family planning also make them a potential tool of coercive social policy. For example, policymakers have linked their use to welfare benefits, and judges, to probation agreements.

In this book, authors from the fields of medicine, ethics, law, and the social sciences probe the unique and vexing ethical and policy issues raised by long-acting contraception. The book offers comprehensive ethical guidelines for health care professionals and policymakers, as well as an ethical framework for analyzing policies and practices concerning long? The authors consider cultural, social, and ethical issues pertaining to contraception, and they provide historical and scientific background on today's controversies. They explore alternative conceptual and theoretical frameworks, including analyses of autonomy, coercion, and responsibility in reproductive decisions.

This volume also notes the special concerns that arise when policies promoting long? Gregory E. The eye of this storm is the changing requirements for consent and, by extension, the changing contexts in which the principle of autonomy is to be applied, or not, as governance develops. As such, it provides a natural focal point for deliberation. There is, of course, already ample debate on what the role of consent should be in the many contexts of biomedical research.

But these are largely framed within, or in reaction to, existing bioethical or policy frameworks and oversight mechanisms. The approach proposed here is different. This new framing allow us to cut through the layers of complications discussed above: the ways various interests are represented in government; the ways potentially conflicting interests collide in mandated data sharing; and the asymmetric influences of commercial interests over and above individual interests in policy development.

Ultimately, as attempts are made to engage the public, this modelling will help to address the disconnect that occurs between government and the citizenry—by providing a policy framework that allows for normative analysis of the role of citizenry in new and emerging forms of governance. In this paper, we explored ethical and social implications of strategies that contemporary national research initiatives employ to encourage public cooperation. Confusion over different levels of citizen involvement can be particularly consequential when the rhetoric and practices of citizen engagement are used by national science initiatives that address health care questions by using biomedical information about their own citizens.

We looked at two such initiatives, the UK care. The architects of the care. It remains unclear what role it might actually be promising to UK citizens. We argue that neither of these initiatives draw from policy frameworks that support normative analysis of the role of citizenry. For discussion on strategies an language used by commercial firms, see [ 31 ]. It is clear from the public response that an opt-out basis for such a project is regarded as disrespectful to the citizens. However, as one of the present authors has explained elsewhere, the care. See [ 72 ]. Ana Gross argues the disentangling of privacy and human agency through informed consent and anonymization initiates a process through which emerges a specific set of property rights.

In the case of government sponsored initiatives, one would have to consider the compatibility of this ethos with principles of governance [ 74 ]. John Rawls is one prominent example in political theory [ 75 ]. See also [ 77 ]. This mechanism to improve participation, or to alter the different elements of participation, and ultimately to change the role of the participant, has implications for the different types of citizen science project.

All authors read and approved the final manuscript. He researches post-war Kantian influences in contemporary ethics and governance, focusing on the roles of autonomy and consent in biomedical data sharing. She and her colleagues EJ, JF, RS , study the promotion and implementation of personalized genomic medicine, precision medicine, and participant-driven genomic research and testing in the U. Her research interests focus on the role of participants within medical research, and the ethics, law and regulation surrounding this.

She uses empirical qualitative methods to describe and analyze the development, diffusion, and commodification of new largely biomedical technologies, from the early stages of development to their integration into clinical practice. He and his colleagues EJ, JF, and MM study the promotion and implementation of personalized genomic medicine and precision medicine in the U.

One of the areas of her research concerns the ethical, commercial and intellectual property aspects of research on human body material and related data.

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Her research focuses on the relationships between law, ethics and the emerging technologies in health including genomics. He and his colleagues MM, JF, RS , study the promotion and implementation of personalized genomic medicine and precision medicine in the U. Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives. Settersten Jr. Juengst 7. Discussion We examine the ethical and social implications of this recruitment strategy.

Summary We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. Members of the public become involved with scientific research in three distinct, if overlapping, ways. People usually consent to participation in research about themselves; however, with proper safeguards and democratic approvals, the public might even be included in studies without their knowledge. Third, in some cases, members of the public have an active role in in the planning and conduct of the research itself, even to the level of choosing the scientific questions to be addressed [ 1 ].

A Venn diagram, which we present in Fig. The government decided to delay GP data harvesting until autumn to allow NHS England the opportunity to persuade GPs, healthcare workers and patients that the care. Availability of data and materials Availability of data and materials not applicable. Competing interests The authors declare that they have no competing interests. Consent for publication Not applicable. Ethics approval and consent to participate Not applicable. Accessed 14 Dec February Riesch H, Potter C. Citizen science as seen by scientists: methodological, epistemological and ethical dimensions.

Public Underst Sci. Citizen science: amateur experts. Algorithm discovery by protein folding game players. Proc Natl Acad Sci. Citizen Science.

Encyclopedia of Applied Ethics

In: Wright JD, editor. International encyclopedia of the social and behavioral sciences. Oxford: Elsevier; Science, Public Engagement. May the sheep safely graze? Uneasy alchemy: Citizens and experts in Louisiana's chemical corridor disputes. Environmental Practice ;7 02 —7. Google Scholar Ottinger G. Buckets of resistance: Standards and the effectiveness of citizen science.

Sci Technol Hum Values. Google Scholar Prainsack B. Genetics as social practice. Farnham: Ashgate; Next steps for citizen science. View Article Google Scholar Zooniverse. Cell slider. A Zooniverse project. Fraxinus ash dieback game. Lessons from Fraxinus, a crowd-sourced citizen science game in genomics. Scientists Home: What drives the quantity and quality of online citizen science participation?

Easier citizen science is better. View Article Google Scholar Editor. Citizen science. Nature Neuroscience. Angrist M. Eyes wide open: the personal genome project, citizen science and veracity in informed consent. Pers Med. Dec Google Scholar Whitehouse: Open science and innovation: of the people, by the people, for the people. Gustetic, K. Honey, L. September 9, Google Scholar EPA: federal community of practice for crowdsourcing and citizen science. Spatiotemporal monitoring of allergic rhinitis symptoms in the Netherlands using citizen science.

The how and why of societal publications for citizen science projects and scientists. Int J Biometeorol. Personal genomics and individual identities: motivations and moral imperatives of early users. New Genetics Soc. Genet Med. View Article Google Scholar Patientslikeme. Google Scholar Genomera. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet. Participant-centric initiatives: tools to facilitate engagement in research. Appl Transl Genomics.

Ethical Issues in Data Science

J Sociol. Patient engagement in research: a systematic review. Disclosure of confidential patient information and the duty to consult: the role of the Health and Social Care Information Centre. Med Law Rev. The social licence for research: why care. J Med Ethics. Accessed 3 Dec Tim Kelsey.

Google Scholar Whitehouse: So what is precision medicine? January 30, A new initiative on precision medicine. N Engl J Med. Fliesler, Nancy. July 8, S Terry. September 17, Big data, open science and the brain: lessons learned from genomics. Frontiers in Human Neuroscience. NIH, News: Panel calls for data revolution. Google Scholar Harris J. Scientific research is a moral duty. Benefit sharing and biobanking in Australia.


Predicting intention to biobank: a national survey. Eur J Pub Health. Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Environ Pollut. Holst L. Jan Protecting dignitary interests of biobank research participants: lessons from Havasupai Tribe v Arizona Board of Regents. Law Innovation Technol.

OEC - Do the Ends Justify the Means: The Ethics of Deception in Social Science Research

Evolving approaches to the ethical management of genomic data. Trends Genet. Public Health Genomics.

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The Hastings Center Series in Ethics. Free Preview cover Ethics, The Social Sciences, and Policy Analysis Interpretive Social Science and Policy Analysis. Ethics, The Social Sciences, and Policy Analysis (The Hastings Center Series in Ethics) [Sidney Callahan, Bruce Jennings] on *FREE* shipping.

Research led by participants: a new social contract for a new kind of research. Google Scholar Wynia MK. Perspect Biol Med. Renegotiating the social contract: healthcare as a natural right. University of Pittsburgh Law Review. Veatch RM.


Justice, the basic social contract and health care. In: Beauchamp T, Walters L, editors. Contemporary issues in bioethics.

Belmont: Wadsworth; Dynamic consent: a patient interface for twenty-first century research networks. Eur J Hum Genet. Digital Health. Medicine, Health Care and Philosophy. Google Scholar Gross A. The economy of social data: exploring research ethics as device. Sociol Rev. View Article Google Scholar Rawls. The idea of an overlapping consensus.

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Hill , p. If so, under what conditions? In a pilot test of this procedure, the single subject looked around uncomfortably, then returned to the assigned task, as the confederates did. I use the term "deception" here to describe all such situations in which subjects consent to participate in research on the basis of less-than-complete information. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs are embracing this populist rhetoric to encourage wider public participation.

Google Scholar Manson, N. Rethinking informed consent in bioethics. Cambridge University Press