Switch to: Citations

Add references

You must login to add references.
  1. The Precision Medicine Nation.Maya Sabatello & Paul S. Appelbaum - 2017 - Hastings Center Report 47 (4):19-29.
    The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. (...)
    Download  
     
    Export citation  
     
    Bookmark   18 citations  
  • Imagined Communities: Reflections on the Origin and Spread of Nationalism.Laurie J. Sears & Benedict Anderson - 1994 - Journal of the American Oriental Society 114 (1):129.
    Download  
     
    Export citation  
     
    Bookmark   742 citations  
  • Have We Asked Too Much of Consent?Barbara A. Koenig - 2014 - Hastings Center Report 44 (4):33-34.
    Paul Appelbaum and colleagues propose four models of informed consent to research that deploys whole genome sequencing and may generate incidental findings. They base their analysis on empirical data that suggests that research participants want to be offered incidental findings and on a normative consensus that researchers incur a duty to offer them. Their models will contribute to the heated policy debate about return of incidental findings. But in my view, they do not ask the foundational question, In the context (...)
    Download  
     
    Export citation  
     
    Bookmark   27 citations  
  • Discourse Ethics as an Ethics of Responsibilty: Comparison and Evaluation of Citizen Involvement in Population Genomics.Éric Racine - 2003 - Journal of Law, Medicine and Ethics 31 (3):390-397.
    Population genomics seeks to better understand genomic diversity and variation at the level of populations. Numerous ethical questions are raised by large studies of human genomic diversity. First, at the level of ethical means, the confidentiality of the genetic data obtained and its handing are challenging. Second, at the more fundamental level of ethical goals or ends, we find questions concerning the meaning and the interpretation of genetic knowledge. What shall we do with this knowledge? Who will decide research orientation (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Gender And The Human Genome.R. Chadwick - 2009 - Mens Sana Monographs 7 (1):10.
    _Gender issues arise in relation to the human genome across a number of dimensions: the level of attention given to the nuclear genome as opposed to the mitochondrial; the level of basic scientific research; decision-making in the clinic related to both reproductive decision-making on the one hand, and diagnostic and predictive testing on the other; and wider societal implications. Feminist bioethics offers a useful perspective for addressing these issues._.
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Protecting Communities in Pharmacogenetic and Pharmacogenomic Research.Charles Weijer & P. B. Miller - unknown
    The existing EELS literature has usefully identified the scope of ethical issues posed by pharmacogenetic and pharmacogenomic research. The time has come for in-depth examination of particular ethical issues. The involvement of racial and ethnic communities in pharmacogenetic and pharmacogenomic research is contentious precisely because it touches upon the science and politics of studying racial and ethnic difference. To date, the ethics literature has not seriously taken account of the fact that such research impinges upon the interests of communities, and (...)
    Download  
     
    Export citation  
     
    Bookmark   8 citations  
  • (1 other version)Return of the citizen: A survey of recent work on citizenship theory.Will Kymlicka & Wayne Norman - 1994 - Ethics 104 (2):352-381.
    This article surveys recent work on the idea of "citizenship", not as a legal category, but as a normative ideal of membership and participation. We focus on two emerging issues. First, whereas traditional notions of citizenship assume that membership and participation are promoted by the possession of rights, many theorists now emphasize civic responsibilities. Second, whereas traditional theories assume that citizenship provides a common status and identity, some theorists now argue that the distinctive needs and identities of certain groups -such (...)
    Download  
     
    Export citation  
     
    Bookmark   89 citations  
  • Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings.Maya Sabatello & Paul S. Appelbaum - 2016 - Journal of Law, Medicine and Ethics 44 (2):292-308.
    Whole genome and exome sequencing techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, (...)
    Download  
     
    Export citation  
     
    Bookmark   5 citations  
  • From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...)
    Download  
     
    Export citation  
     
    Bookmark   25 citations  
  • Population Genomics and Research Ethics with Socially Identifiable Groups.Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):356-370.
    The genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups to discover variation that could lead to (...)
    Download  
     
    Export citation  
     
    Bookmark   11 citations  
  • Does Recent Research on Adolescent Brain Development Inform the Mature Minor Doctrine?L. Steinberg - 2013 - Journal of Medicine and Philosophy 38 (3):256-267.
    US Supreme Court rulings concerning sanctions for juvenile offenders have drawn on the science of brain development and concluded that adolescents are inherently less mature than adults in ways that render them less culpable. This conclusion departs from arguments made in cases involving the mature minor doctrine, in which teenagers have been portrayed as comparable to adults in their capacity to make medical decisions. I attempt to reconcile these apparently incompatible views of adolescents’ decision-making competence. Adolescents are indeed less mature (...)
    Download  
     
    Export citation  
     
    Bookmark   19 citations  
  • The “technoscientization” of medicine and its limits: technoscientific identities, biosocialities, and rare disease patient organizations.Peter Wehling - 2011 - Poiesis and Praxis 8 (2-3):67-82.
    The fact that the emergence of “technoscience,” resulting from the coalescing of science and technology, may have serious social and cultural impact has been debated in recent years particularly with regard to the field of medicine. The present article is exploring the scope and limits of the “technoscientization” of medicine using the example of rare disease patient associations. It is investigated whether and to what extent these organizations adopt technoscientific illness identities and subscribe to the research priorities and objectives of (...)
    Download  
     
    Export citation  
     
    Bookmark   5 citations  
  • Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.
    Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...)
    Download  
     
    Export citation  
     
    Bookmark   7 citations  
  • Unrealistic optimism in early-phase oncology trials.Lynn A. Jansen, Paul S. Appelbaum, William Mp Klein, Neil D. Weinstein, William Cook, Jessica S. Fogel & Daniel P. Sulmasy - 2011 - IRB: Ethics & Human Research 33 (1):1.
    Unrealistic optimism is a bias that leads people to believe, with respect to a specific event or hazard, that they are more likely to experience positive outcomes and/or less likely to experience negative outcomes than similar others. The phenomenon has been seen in a range of health-related contexts—including when prospective participants are presented with the risks and benefits of participating in a clinical trial. In order to test for the prevalence of unrealistic optimism among participants of early-phase oncology trials, we (...)
    Download  
     
    Export citation  
     
    Bookmark   17 citations  
  • Biobanking Research and Privacy Laws in the United States.Heather L. Harrell & Mark A. Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (1):106-127.
    Privacy is protected in biobank-based research in the US primarily by the Health Insurance Portability and Accountability Act Privacy Rule and the Federal Policy for Protection of Human Subjects. Neither rule, however, was created to function in the unique context of biobank research, and therefore neither applies to all biobank-based research. Not only is it challenging to determine when the HIPAA Privacy Rule or the Common Rule apply, but these laws apply different standards to protect privacy. In addition, many other (...)
    Download  
     
    Export citation  
     
    Bookmark   4 citations  
  • How Genetics Might Affect Real Property Rights.Mark A. Rothstein & Laura Rothstein - 2016 - Journal of Law, Medicine and Ethics 44 (1):216-221.
    New developments in genetics could affect a variety of real property rights. Mortgage lenders, mortgage insurers, real estate sellers, senior living centers, retirement communities, or other parties in residential real estate transactions begin requiring predictive genetic information as part of the application process. One likely use would be by retirement communities to learn an individual's genetic risk for Alzheimer's disease. The federal Fair Housing Act prohibits discrimination based on disability, but it is not clear that it would apply to genetic (...)
    Download  
     
    Export citation  
     
    Bookmark   3 citations