46 found
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  1.  36
    Spinning the Genome: Why Science Hype Matters.Timothy Caulfield - 2018 - Perspectives in Biology and Medicine 61 (4):560-571.
    Genetic research attracts significant attention from the popular press, and often these representations are less than ideal, skewing toward hyperbole and promises of near-future benefits. Indeed, revolutionary language has permeated public discourse since the start of the Human Genome Project in the early 1990s. If the near constant parade of enthusiastic headlines is to be believed, we have been in the midst of a "genetic revolution" for over three decades, yet, the promised revolutionary changes never fully materialize, at least not (...)
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  2.  50
    DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model. [REVIEW]Timothy Caulfield, Ross Upshur & Abdallah Daar - 2003 - BMC Medical Ethics 4 (1):1-4.
    Background Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. Discussion In this paper, we discuss the (...)
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  3.  13
    Stem Cell Tourism and Doctors' Duties to Minors—A View From Canada.Amy Zarzeczny & Timothy Caulfield - 2010 - American Journal of Bioethics 10 (5):3-15.
    While the clinical promise of much stem cell research remains largely theoretical, patients are nonetheless pursuing unproven stem cell therapies in jurisdictions around the world?a phenomenon referred to as ?stem cell tourism.? These treatments are generally advertised on a direct-to-consumer basis via the Internet. Research shows portrayals of stem cell medicine on such websites are overly optimistic and the claims made are unsubstantiated by published evidence. However, anecdotal evidence suggests that parents are pursing these ?treatments? for their children, despite potential (...)
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  4.  22
    Handling Ethical, Legal and Social Issues in Birth Cohort Studies Involving Genetic Research: Responses From Studies in Six Countries.Nola M. Ries, Jane LeGrandeur & Timothy Caulfield - 2010 - BMC Medical Ethics 11 (1):4.
    Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma) or may have a broad aim to research a range of (...)
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  5.  20
    Ethics Hype?Timothy Caulfield - 2016 - Hastings Center Report 46 (5):13-16.
    There has been growing concern about the phenomenon of science hype, the tendency to exaggerate the value or near-future application of research results. Although this is a problem that touches every area of biomedicine, the topic of genetics seems to be particularly prone to enthusiastic predictions. The world has been told for over two decades-by the media, researchers, politicians, and the biotech industry-that a genome-driven health care revolution is just around the corner. And while the revolution never seems to arrive, (...)
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  6.  9
    Addressing Internalized Weight Bias and Changing Damaged Social Identities for People Living With Obesity.Ximena Ramos Salas, Mary Forhan, Timothy Caulfield, Arya M. Sharma & Kim D. Raine - 2019 - Frontiers in Psychology 10.
  7.  42
    Stem Cell Research and Economic Promises.Timothy Caulfield - 2010 - Journal of Law, Medicine and Ethics 38 (2):303-313.
    In the context of stem cell research, the promise of economic growth has become a common policy argument for adoption of permissive policies and increased government funding. However, declarations of economic and commercial benefit, which can be found in policy reports, the scientific literature, public funding policies, and the popular press, have arguably created a great deal of expectation. Can stem cell research deliver on the economic promise? And what are the implications of this economic ethos for the researchers who (...)
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  8.  7
    The Commercialization of University-Based Research: Balancing Risks and Benefits.Timothy Caulfield & Ubaka Ogbogu - 2015 - BMC Medical Ethics 16 (1):1-7.
    BackgroundThe increasing push to commercialize university research has emerged as a significant science policy challenge. While the socio-economic benefits of increased and rapid research commercialization are often emphasized in policy statements and discussions, there is less mention or discussion of potential risks. In this paper, we highlight such potential risks and call for a more balanced assessment of the commercialization ethos and trends.DiscussionThere is growing evidence that the pressure to commercialize is directly or indirectly associated with adverse impacts on the (...)
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  9.  39
    Why a Criminal Ban? Analyzing the Arguments Against Somatic Cell Nuclear Transfer in the Canadian Parliamentary Debate.Timothy Caulfield & Tania Bubela - 2007 - American Journal of Bioethics 7 (2):51 – 61.
    Somatic cell nuclear transfer (SCNT) remains a controversial technique, one that has elicited a variety of regulatory responses throughout the world. On March 29, 2005, Canada's Assisted Human Reproduction Act came into force. This law prohibits a number of research activities, including SCNT. Given the pluralistic nature of Canadian society, the creation of this law stands as an interesting case study of the policy-making process and how and why a liberal democracy ends up making the relatively rare decision to use (...)
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  10.  5
    Stem Cell Research and Economic Promises.Timothy Caulfield - 2010 - Journal of Law, Medicine and Ethics 38 (2):303-313.
    Policy arguments in support of stem cell research often use economic benefit as a key rationale for permissive policies and increased government funding. Economic growth, job creation, improved productivity, and a reduction in the burden of disease are all worthy goals and, as such, can be used as powerful rhetorical tools in efforts to sway voters, politicians, and funding agencies. However, declarations of economic and commercial benefit — which can be found in policy reports, the scientific literature, public funding policies, (...)
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  11.  19
    Defining ‘Medical Necessity’ in an Age of Personalised Medicine: A View From Canada.Timothy Caulfield & Amy Zarzeczny - 2014 - Bioessays 36 (9):813-817.
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  12.  55
    Human Cloning Laws, Human Dignity and the Poverty of the Policy Making Dialogue.Timothy Caulfield - 2003 - BMC Medical Ethics 4 (1):1-7.
    Background The regulation of human cloning continues to be a significant national and international policy issue. Despite years of intense academic and public debate, there is little clarity as to the philosophical foundations for many of the emerging policy choices. The notion of "human dignity" is commonly used to justify cloning laws. The basis for this justification is that reproductive human cloning necessarily infringes notions of human dignity. Discussion The author critiques one of the most commonly used ethical justifications for (...)
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  13.  20
    The Gene Patent Controversy on Twitter: A Case Study of Twitter Users’ Responses to the CHEO Lawsuit Against Long QT Gene Patents.Li Du, Kalina Kamenova & Timothy Caulfield - 2015 - BMC Medical Ethics 16 (1):55.
    The recent Canadian lawsuit on patent infringement, filed by the Children’s Hospital of Eastern Ontario, has engendered a significant public debate on whether patenting genes should be legal in Canada. In part, this public debate has involved the use of social networking sites, such as Twitter. This case provides an opportunity to examine how Twitter was used in the context of this gene patent controversy.
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  14.  24
    Policy Recommendations for Addressing Privacy Challenges Associated with Cell-Based Research and Interventions.Ubaka Ogbogu, Sarah Burningham, Adam Ollenberger, Kathryn Calder, Li Du, Khaled El Emam, Robyn Hyde-Lay, Rosario Isasi, Yann Joly, Ian Kerr, Bradley Malin, Michael McDonald, Steven Penney, Gayle Piat, Denis-Claude Roy, Jeremy Sugarman, Suzanne Vercauteren, Griet Verhenneman, Lori West & Timothy Caulfield - 2014 - BMC Medical Ethics 15 (1):7.
    The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what (...)
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  15.  3
    Regulatory and Policy Tools to Address Unproven Stem Cell Interventions in Canada: The Need for Action.Timothy Caulfield & Blake Murdoch - 2019 - BMC Medical Ethics 20 (1):1-7.
    The marketing of unproven direct-to-consumer stem cell interventions is becoming widespread in Canada. There is little evidence supporting their use and they have been associated with a range of harms. Canada has been slower to act against clinics offering these interventions than other jurisdictions, including the United States. Here, we outline the regulatory and policy tools available in Canada to address this growing problem. Health Canada’s regulations governing cell therapies are complex, but recent statements make it clear that Health Canada (...)
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  16.  30
    Public Perceptions and Biobanking: What Does the Research Really Say?Christen Rachul, Amy McGuire & Timothy Caulfield - 2012 - Studies in Ethics, Law, and Technology 6 (1).
  17.  32
    Human Genetic Research, Race, Ethnicity and the Labeling of Populations: Recommendations Based on an Interdisciplinary Workshop in Japan.Yasuko Takezawa, Kazuto Kato, Hiroki Oota, Timothy Caulfield, Akihiro Fujimoto, Shunwa Honda, Naoyuki Kamatani, Shoji Kawamura, Kohei Kawashima, Ryosuke Kimura, Hiromi Matsumae, Ayako Saito, Patrick E. Savage, Noriko Seguchi, Keiko Shimizu, Satoshi Terao, Yumi Yamaguchi-Kabata, Akira Yasukouchi, Minoru Yoneda & Katsushi Tokunaga - 2014 - BMC Medical Ethics 15 (1):33.
    A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the humanities, social (...)
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  18.  25
    Popular Representations of Race: The News Coverage of BiDil.Timothy Caulfield & Simrat Harry - 2008 - Journal of Law, Medicine and Ethics 36 (3):485-490.
    The BiDil story offers an ideal opportunity to explore the nature and tone of media representations of race and genetics. For example, was a biological view of race emphasized? Or was the notion of race presented in a critical fashion?
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  19.  43
    Variations and Voids: The Regulation of Human Cloning Around the World. [REVIEW]Shaun D. Pattinson & Timothy Caulfield - 2004 - BMC Medical Ethics 5 (1):1-8.
    Background No two countries have adopted identical regulatory measures on cloning. Understanding the complexity of these regulatory variations is essential. It highlights the challenges associated with the regulation of a controversial and rapidly evolving area of science and sheds light on a regulatory framework that can accommodate this reality. Methods Using the most reliable information available, we have performed a survey of the regulatory position of thirty countries around the world regarding the creation and use of cloned embryos (see Table (...)
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  20.  9
    Direct-To-Consumer Genetics and Health Policy: A Worst-Case Scenario?Timothy Caulfield - 2009 - American Journal of Bioethics 9 (6-7):48-50.
  21.  12
    What's Missing? Discussing Stem Cell Translational Research in Educational Information on Stem Cell “Tourism”.Zubin Master, Amy Zarzeczny, Christen Rachul & Timothy Caulfield - 2013 - Journal of Law, Medicine and Ethics 41 (1):254-268.
    Stem cell tourism is a form of medical tourism in which patients travel to receive unproven or untested stem cell-based interventions for many different diseases and conditions. A few studies indicate that patients and the public have several reasons for seeking these treatments for themselves or for their loved ones. Among these are the feeling of not having any other clinical options left, distrust of or frustration with their home country’s health care system, and a perception that their home country (...)
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  22.  3
    Microsystems and Nanoscience for Biomedical Applications: A View to the Future.Christopher J. Backhouse, Karan V. I. S. Kaler, Timothy Caulfield, Michael D. Mehta & Linda M. Pilarski - 2004 - Bulletin of Science, Technology and Society 24 (1):40-45.
    At present there is an enormous discrepancy between our nanotechnological capabilities, our social wisdom, and consensus on how to apply them. To date, cost considerations have greatly constrained our application of nanotechnologies. However, novel advances in microsystem platform technologies are about to greatly diminish that economic constraint while developing new industries. Properly used in a solid legal and ethical framework, within an educated population, these advances will vastly enrich our quality of life without being intrusive. Improperly used, these technologies could (...)
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  23.  17
    What's Missing? Discussing Stem Cell Translational Research in Educational Information on Stem Cell “Tourism”.Zubin Master, Amy Zarzeczny, Christen Rachul & Timothy Caulfield - 2013 - Journal of Law, Medicine and Ethics 41 (1):254-268.
    Stem cell tourism is a growing industry in which patients pursue unproven stem cell therapies for a wide variety of illnesses and conditions. It is a challenging market to regulate due to a number of factors including its international, online, direct-to-consumer approach. Calls to provide education and information to patients, their families, physicians, and the general public about the risks associated with stem cell tourism are mounting. Initial studies examining the perceptions of patients who have pursued stem cell tourism indicate (...)
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  24.  2
    Popular Representations of Race: The News Coverage of BiDil.Timothy Caulfield & Simrat Harry - 2008 - Journal of Law, Medicine and Ethics 36 (3):485-490.
    The popular press plays an important role in science communication, both reflecting and shaping public attitudes about particular issues and technologies. It is a key source of health information and can help to frame public debates about science and health care controversies. Given this powerful role, there has long been a concern that media representations of genetics are overly simplistic and inappropriately deterministic in tone. If true, media representations may hurt collective deliberations about science issues and misinform the public regarding (...)
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  25. Faisons mieux les choses : représentation publique de la science sur la COVID-19.Tania Bubela, Timothy Caulfield, Jonathan Kimmelman & Vardit Ravitsky - 2020 - Ottawa, Canada:
    Les recherches scientifiques sur la COVID-19 sont à la fois menées et diffusées à une cadence effrénée. Bien qu’il soit inspirant de voir la communauté de la recherche répondre avec autant de vigueur à la crise causée par la pandémie, toute cette activité a par ailleurs engendré un chaos de mauvaises données, de résultats contradictoires et de manchettes exagérées. Alors que la polarisation, la déformation et la médiatisation des résultats scientifiques s’intensifient chaque jour, les inquiétudes se font de plus en (...)
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  26. Let’s Do Better: Public Representations of COVID-19 Science.Tania Bubela, Timothy Caulfield, Jonathan Kimmelman & Vardit Ravitsky - 2020 - Ottawa, Canada:
    COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion (...)
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  27. Book Reviews-Legal Rights and Human Genetic Material.Bartha Maria Knoppers, Timothy Caulfield & T. Douglas Kinsella - 1998 - Bioethics 12 (4):343.
     
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  28. Reconsenting Paediatric Research Participants for Use of Identifying Data.Blake Murdoch, Allison Jandura & Timothy Caulfield - forthcoming - Journal of Medical Ethics:medethics-2021-107958.
    When a minor research participant reaches the age of majority or the level of maturity necessary to be granted legal decision-making capacity, reconsent can be required for ongoing participation in research or use of health information and banked biological materials. Despite potential logistical concerns with implementation and ethical questions about the trade-offs between maximising respect for participant agency and facilitating research that may generate benefits, reconsent is the approach most consistent with both law and research ethics.Canadian common law consent requirements (...)
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  29.  29
    Technology Assessment and Resource Allocation for Predictive Genetic Testing: A Study of the Perspectives of Canadian Genetic Health Care Providers.Alethea Adair, Robyn Hyde-Lay, Edna Einsiedel & Timothy Caulfield - 2009 - BMC Medical Ethics 10 (1):6-.
    With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada. The authors conducted semi-structured interviews with 16 senior (...)
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  30. Glenn McGee, The Perfect Baby: A Pragmatic Approach to Genetics Reviewed By.Timothy Caulfield - 1997 - Philosophy in Review 17 (5):352-354.
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  31.  9
    Conflicts of Interest in Clinical Research: Addressing the Issue of Physician Remuneration.Timothy Caulfield & Glenn Griener - 2002 - Journal of Law, Medicine and Ethics 30 (2):305-308.
    In the past few years, there have been a number of high profile incidents that have emphasized the issues associated with financial conflicts of interest. As a result, commentators and policy-makers throughout the world have been directing their attention to how financial conflicts should be addressed. Despite such activity, however, there are few policies that provide specific guidance addressing one of the most common forms of financial conflict-the provision of generous remuneration packages to clinical investigators.In this column, we explore the (...)
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  32.  5
    Health Misinformation and the Power of Narrative Messaging in the Public Sphere.Timothy Caulfield, Alessandro R. Marcon, Blake Murdoch, Jasmine M. Brown, Sarah Tinker Perrault, Jonathan Jarry, Jeremy Snyder, Samantha J. Anthony, Stephanie Brooks, Zubin Master, Christen Rachul, Ubaka Ogbogu, Joshua Greenberg, Amy Zarzeczny & Robyn Hyde-Lay - 20019 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 2 (2):52-60.
    Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many (...)
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  33.  10
    Pragmatic Clinical Trials and the Consent Process.Blake Murdoch & Timothy Caulfield - 2018 - Research Ethics 14 (2):1-14.
    Pragmatic clinical trials are a relatively new methodological approach to the execution of clinical research that can increase research efficiency and provide access to unique data. Some have suggested that the costs and delays associated with obtaining informed consent could make PCTs difficult or even impossible to execute. Alternative consent models have been proposed, some of which lower standards of disclosure, delay consent, or waive it altogether. We analyze the permissibility of changes to informed consent in the context of Canadian (...)
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  34.  21
    Integrating Bioethics and Health Law Into the Canadian Institutes of Health Research.Susan Sherwin, Françoise Baylis, Alan Bernstein, Timothy Caulfield, Bernard Dickens, Jocelyn Downie, Bartha Knoppers, Thérèse Leroux, Neil MacDonald, Michael McDonald, Janet Storch & Charles Weijer - unknown
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  35.  12
    That Personal Touch.Timothy Caulfield - 2011 - Hastings Center Report 41 (3):4-4.
  36.  3
    The Law and Problematic Marketing by Private Umbilical Cord Blood Banks.Blake Murdoch, Alessandro R. Marcon & Timothy Caulfield - 2020 - BMC Medical Ethics 21 (1):1-6.
    BackgroundPrivate umbilical cord blood banking is a for-profit industry in which parents pay to store blood for potential future use. Governments have noted the tendency for private banks to oversell the potential for cord blood use, especially in relation to speculative cell therapies not yet supported by clinical evidence. We assessed the regulatory landscape governing private cord bank marketing in Canada.Main bodyBecause the problematic marketing of private cord blood banking for future use often relates to speculative future cell therapies that (...)
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  37.  11
    Balancing Efficiency and the Protection of Research Participants: Canadian Allergy/Asthma Researchers’ Perspectives on the Ethics Review of Multi-Site Health Research.Zubin Master, Nola M. Ries & Timothy Caulfield - 2011 - Journal of Clinical Research and Bioethics 2 (5).
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  38.  4
    Regulatory and Policy Tools to Address Unproven Stem Cell Interventions in Canada: The Need for Action.Timothy Caulfield & Blake Murdoch - forthcoming - Most Recent Articles: Bmc Medical Ethics.
    The marketing of unproven direct-to-consumer stem cell interventions is becoming widespread in Canada. There is little evidence supporting their use and they have been associated with a range of harms. Canada has been slower to act against clinics offering these interventions than other jurisdictions, including the United States. Here, we outline the regulatory and policy tools available in Canada to address this growing problem. Health Canada’s regulations governing cell therapies are complex, but recent statements make it clear that Health Canada (...)
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  39.  10
    Research Ethics and the Role of the Professional Bodies: A View From Canada.Timothy Caulfield, Trudo Lemmens, Douglas Kinsella & Michael McDonald - 2003 - Journal of Law, Medicine and Ethics 32 (2):365-368.
    An increasing number of community physicians are involved in clinical research.Indeed, 60 of industry-funded research is now spent on community based trials. This surge in community based clinical trials has increased the number of clinical trials applications submitted to the drug regulatory agencies by pharmaceutical sponsors. Many have argued that the commercial interests connected to the conduct and outcome of these trials also increases the potential for conflicts of interest for participating physicians. The context in which these trials take place (...)
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  40.  9
    Should We Call It Fraud?Timothy Caulfield - 2012 - Hastings Center Report 42 (1):inside back cover-inside back co.
  41.  13
    Minimal Risk and Large-Scale Biobank and Cohort Research.Timothy Caulfield & Charles Weijer - unknown
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  42.  10
    That Personal TouchTo the EditorTo the EditorTo the EditorTo the EditorLeonard M. Fleck repliesErrata.Timothy Caulfield - 2011 - Hastings Center Report 41 (3):4-4.
    To the Editor: Last year I sent a vial of my spit to a prominent direct-to-consumer genetic testing company. The company's Web site promised that, in return, I would get genetic risk information that would allow me to "make life-style choices" and "make more informed decisions" about my health—in other words, personalize my health behaviors and medical care.When the results arrived I found little that was helpful. There was lots of fun and interesting information. It was, after all, information about (...)
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  43.  6
    Currents in Contemporary Ethics.Timothy Caulfield, Trudo Lemmens, Douglas Kinsella & Michael McDonald - 2004 - Journal of Law, Medicine and Ethics 32 (2):365-368.
    An increasing number of community physicians are involved in clinical research.Indeed, 60 of industry-funded research is now spent on community based trials. This surge in community based clinical trials has increased the number of clinical trials applications submitted to the drug regulatory agencies by pharmaceutical sponsors. Many have argued that the commercial interests connected to the conduct and outcome of these trials also increases the potential for conflicts of interest for participating physicians. The context in which these trials take place (...)
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  44.  5
    Harmonizing Commercialization and Gene Patent Policy with Other Social Goals.Lorraine Sheremeta, R. Gold & Timothy Caulfield - 2003 - In Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. Martinus Nijhoff. pp. 423--452.
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  45.  6
    Conflicts of Interest in Clinical Research: Addressing the Issue of Physician Remuneration.Timothy Caulfield & Glenn Griener - 2002 - Journal of Law, Medicine and Ethics 30 (2):305-308.
    In the past few years, there have been a number of high profile incidents that have emphasized the issues associated with financial conflicts of interest. As a result, commentators and policy-makers throughout the world have been directing their attention to how financial conflicts should be addressed. Despite such activity, however, there are few policies that provide specific guidance addressing one of the most common forms of financial conflict-the provision of generous remuneration packages to clinical investigators.In this column, we explore the (...)
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  46.  4
    Currents in Contemporary Ethics.Timothy Caulfield & Glenn Griener - 2002 - Journal of Law, Medicine and Ethics 30 (2):305-308.
    In the past few years, there have been a number of high profile incidents that have emphasized the issues associated with financial conflicts of interest. As a result, commentators and policy-makers throughout the world have been directing their attention to how financial conflicts should be addressed. Despite such activity, however, there are few policies that provide specific guidance addressing one of the most common forms of financial conflict-the provision of generous remuneration packages to clinical investigators.In this column, we explore the (...)
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