This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Center NewsLynn Dressler has accepted a position at the University of North Carolina as Assistant Professor, School of Pharmacy, Division of Pharmaceutical Outcomes and Policy, Institute of Pharmacogenomics and Individualized Therapy, with joint appointments in the Dept of Genetics and Lineberger Comprehensive Cancer Center. Congratulations! Shlomit Zuckerman received a grant from the Brocher Foundation to stay at the Brocher Centre in Geneva in January 2008, where she will collect data on the European experience with expansion of newborn screening and its impact on the expanded program in Israel for her dissertation. The 2007 CGREAL Annual Retreat will be Friday, November 2, 2007 at Squire Valleevue Farm. OpportunitiesThe Governance of Science and Technology: A Joint GovNet/CAPPE/UNESCO Conference Call for Abstracts 2007 Annual HRPP Conference | PRIM&R Call for Papers: Testing genes, profiling DNA: The global governance of genomics - hopes, duties and security Eyes on the Prize: Truth Telling about Genetic Testing NE Ohio ACRP: Promoting Excellence in Clinical Research Conference The all-day conference will focus on compliance with speakers representing the FDA, OHRP, and internal compliance departments from various institutions and would benefit investigators, research coordinators, monitors, IRB members, and other personnel who participate on the research team. Health Policy Research FELLOWSHIP Call for Papers: Testing genes, profiling DNA: The global governance of genomics - hopes, duties and security 3rd Annual Corsage Workshop: Contingencies of Genomics - Finding Roads into the Future Utrecht, Netherlands Due 6 November One Origin, One Race, One Earth: Genetics, Human Rights and the Next Phase of Human Evolution Netherlands Genomics Initiative: Genomics Momentum 2007 Annual HRPP Conference | PRIM&R 3rd Annual Corsage Workshop: Contingencies of Genomics - Finding Roads into the Future 13 December, 2007 Utrecht, Netherlands What's The Use of Race?
Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission. Resources
Centers for Excellence in ELSI Research (CEER)
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Genetics in the News
DNA discrimination at work (NEWS.com.au Business)"Australian Genetic Discrimination Project (GDP), formed in 2002, is due to reveal the findings of an investigation to uncover cases of genetic discrimination in the workplace. ..." [Related: Prejudice against the stupid is stupid (New Scientist)"Yet there is still one sort of genetic discrimination that is not only legal, it is universally applied and wholly respectable. They are the individuals who lie at the bottom of the normal range of human intelligence. ..."]
Bioethics guidelines for nutrigenomics (PHG Foundation) "The European Nutrigenomics Organisation (NuGO), a European network of excellence funded as part of the EU s Sixth Framework Programme for Research, has published a set of bioethics guidelines designed to help scientists undertaking nutrigenomics research using human subjects. ..."
Health experts: E-health records privacy rules needed (Washington Post) "The Health Insurance Portability and Accountability Act (HIPAA), passed by the U.S. Congress in 1996, sets security standards that health-care providers must follow, but the law leaves major gaps in privacy ..." [Related: Government Advisory Group Urges Expansion of HIPAA Rules - "The National Committee on Vital and Health Statistics requested that HIPAA privacy protections be extended to more health care entities that will be part of the Nationwide Health Information Network ..."]
Full Disclosure (Wall Street Journal) "In a couple of months, my genome, my answers to a substantial health questionnaire and my medical records (as many of them as I can collect, anyway) will be posted on the Internet for all to see. I'm one of 10 members of Harvard geneticist George Church's Personal Genome project. ..."
Survey on attitudes to use of personal medical information in health research "Public support for research is strong, but more needs to be done to understand people’s concerns in areas such as consent and confidentiality. ..."
Parents win 'wrongful birth' lawsuit "The Estrada's sued USF and Dr. Kousseff, saying the hereditary disease should have been recognized through simple tests. ..." [Related: A Challenge to Progressives on Choice (The Nation) "The potential for new biotechnologies to have far-reaching societal consequences presents a novel challenge to the progressive belief that people have an unrestricted right to make any and all of their own reproductive choices. ...": Designer Babies and the Pro-Choice Movement (Dissent ) "Like it or not, pro-choice groups will be compelled to decide on whether and how to endorse regulation of reproductive technologies without jeopardizing already tenuous rights. ..."]
U.S. 8th Circuit Court of Appeals rules in favor of Washington University in case involving ownership of tissues donated for research "The US Supreme Court has been asked to hear the widely-publicized case of renouned prostate cancer researcher William Catalona's attempt to take the biorepository of tissue samples he helped create at Washington University in St. Louis to his new institution, Northwestern University. ..."
Microsoft RFP: Personalized Medicine: Improving Genome-Wide Association Studies "Microsoft Research has put out a request for proposals for studies that examine Personalized Medicine: Improving Genome-Wide Association Studies. ..."
Yes, Google really IS interested in gene mapping "Google is genuinely interested in the topic, which is getting all that information about the human genome into its database. ..."
Sciences joins project to map the Middle East DNA tree"Dubai-based Eastern Biotech & Life Sciences announced this week it is proud to be a part of the 'National Genographic Project', aiming to map how humankind populated the earth. ..."
NIH Launches National Network to Connect Investigators Based at Minority Institutions"Award Will Facilitate Multi-Site Collaborative Clinical and Translational Research ..."
Synthetic biology: call for views "The Royal Society seeks your views on the emerging area of synthetic biology. ..."
Epigenetics. NOVA | scienceNOW, PBS. "NOVA scienceNOW on PBS features a segment on epigenetics ..."
Interleukin Genetics Initiates Program To Develop Genetic Test To Guide More Effective Weight Control In Obese Patients "Interleukin Genetics, Inc. (Amex: ILI) announced today a program to use its perilipin genetic technology, in-licensed from Tufts University, to develop a genetic test to guide medically-supervised weight loss in obese individuals. ... [Related: SpartanDX: Personal DNA Analyzer "The Spartan real-time PCR device offers the same desired quantitation and precision but is affordable by all. It is a major breakthrough in this common and necessary technology. ..."]
Reducing insulin signaling in the brain can prolong lifespan "Study explains the physiologic benefits of diet and exercise ..."
Genetics in the Literature
Rose, N. (2007). The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ, Princeton University Press."Where countless bioethicists, philosophers, and other social critics have fretted over the "posthuman" future signaled by recent developments in neuroscience, genomics, pharmacology, and surgery, Rose (director of the BIOS Centre at the London School of Economics) shrugs off such anxious reflections: Rose's claim: we have never been more biological, never more intimately invested in reshaping our existence as biological organisms. The book centers on these investments, on our increasingly "somatic" self-understandings. The intensely corporeal character of our relationships to ourselves and to our imagined futures, Rose proposes, "forms the milieu within which novel forms of authority are taking shape." ..."
Anderson, E. E. and J. M. DuBois (2007). "The need for evidence-based research ethics: A review of the substance abuse literature." Drug and Alcohol Dependence 86(2-3): 95-105." Many well-intentioned, protectionist concerns about recruitment incentives, consent comprehension, and drug administration studies are not supported by empirical data. ..."
Angell, E. L., C. J. Jackson, et al. (2007). "Is 'inconsistency' in research ethics committee decision-making really a problem? An empirical investigation and reflection." Clinical Ethics 2(2): 92-99."We conducted a systematic study to identify and compare the ethical issues raised in 54 letters to researchers about the same 18 applications submitted to three RECs over one year. The most common type of ethical trouble identified in REC letters related to informed consent, followed by scientific design and conduct, care and protection of research participants, confidentiality, recruitment and documentation. Inconsistency is often treated as evidence of incompetence and caprice, but a more sophisticated understanding of the role of RECs and their functioning is required. ..."
Anisimov, V. N., I. G. Popovich, et al. (2007). "Methods of evaluating the effect of pharmacological drugs on aging and life span in mice." Methods Mol Biol 371: 227-36. "The methodology of testing anti-aging drugs in laboratory mice is presented. It includes the selection of mouse strain, sex, age at start of treatment, housing conditions, design of the long-term study, some noninvasive methods of assessment, pathology examination, and statistical treatment of the results. ..."
Artizzu, F. "The informed consent aftermath of the genetic revolution. An Italian example of implementation." Medicine, Health Care and Philosophy. "This paper addresses the apparent lack of a single, universal model of obtaining informed consent among populations involved in genetic research and it argues for the need to develop an ethical framework tailored to the specific features of each project. In order to support this theory of contextualizing, the case of a private biotechnology company, SharDNA is presented. The present paper explores the management of its biobank, developed from a genetic research project carried out on isolated populations living on the Italian island of Sardinia. In particular, the paper highlights how the company is tackling the problem of informed consent and other ethical requirements for genetic research, such as the respect of individual privacy, the population approach and the existing Italian legal regulatory framework. ..."
Ashcraft, M. H. and J. A. Krause (2007). "Social and Behavioral Researchers' Experiences With Their IRBs." ETHICS & BEHAVIOR 17(1): 1-17."A national survey on researchers' experiences with their institutional review boards (IRBs) is presented, focused exclusively on social and behavioral researchers. A wide range of experiences is apparent in the data, especially in terms of turnaround time for submitted protocols, incidence of data collection without prior IRB approval, and stated reasons for "going solo." Sixty-two percent felt that the turnaround time they typically experience is "reasonable," and 44% said they had not experienced long delays in obtaining approval. However, 48% of respondents reported either conducting a project without IRB approval or modifying an existing project without IRB approval, with anticipated time for approval being the dominant reason offered for doing so. ..."
Barclay, L. A. and K. S. Markel (2007). "Discrimination and stigmatization in work organizations: A multiple level framework for research on genetic testing." Human Relations 60(6): 953-980.In this article, we examine how genetic testing may be the basis of a new form of exclusion in organizations. Testing reveals the genetic composition of an individual and can identify genetically linked conditions. Discrimination, related to genetic composition, may occur through either the stigmatization or categorization of individuals or groups based on genetic test results. The potential impact of genetic testing and the associated discriminatory processes on both employees and organizations is outlined. ..."
Bodamer, O., G. Hoffmann, et al. "Expanded newborn screening in Europe 2007." Journal of Inherited Metabolic Disease."We present an overview of the current status of expanded newborn screening programmes in Europe. While the first pilot programmes were initiated in 1998 in Germany, most countries started within the last 3 years. Harmonization of disease screening panels, spectrum of metabolites analysed, sizes of screening laboratories, analytical procedures, follow-up management and proficiency and quality testing is urgently warranted on the European level. ..."
Breese, P., C. Rietmeijer, et al. (2007). "Content Among Locally Approved HIPAA Authorization forms for Research." Journal of Empirical Research on Human Research Ethics 2(1): 43-46. "THIS STUDY WAS DESIGNED TO ASSESS differences in the content of HIPAA authorization forms now required for clinical research. Significant differences existed in how long the disclosure agreement would remain in effect, and complex legalistic language was common. Thus, while research authorization forms technically met the requirements, the complex language and confusion over personal identifiers may raise concerns in prospective research participants. ..."
Caux, C., D. J. Roy, et al. (2007). "Anticipating ethical aspects of the use of biomarkers in the workplace: A tool for stakeholders." Social Science & Medicine 65(2): 344-354. "This research aimed to understand how occupational health stakeholders represented the various ethical concerns raised by the use of biomarkers of exposure, effects and susceptibility to harmful agents. These representations were investigated by seven homogeneous focus group interviews and an Internet discussion forum. The main ethical problems raised by the stakeholders were organized around three emergent themes: a narrative of science, the validation of biomarkers and the protection of workers. From these themes emanate the principal ethical problems raised by the stakeholders: confidentiality, the interpretation of data, consent and information, as well as an advantages/disadvantages ratio. These problems are described as ethical tension zones. > ..."
Cave, E. and C. Nichols (2007). "Reforming the ethical review system: balancing the rights and interests of research participants with the duty to facilitate good research." Clinical Ethics 2(2): 74-79. " This article examines the implications of the ongoing reform of the NHS research ethics review system for researchers, ethics committees and research participants. ..."
Cooper, M. (2007). "Sharing Data and Results in Ethnographic Research: Why This Should not be an Ethical Imperative." Journal of Empirical Research on Human Research Ethics 2(1): 3-19. "I argue that, ideally, sharing should be a regular component of ethnographic research but should not be an ethical requirement. I recommend instead that research ethics boards educate themselves about the nature of ethnographic research. Further, they should approach decision making on the issue of data or results sharing on a case-by-case basis. For researchers, I recommend that discussion of data and result sharing should become part of the education of all ethnographers and that discussion of the issue should be fostered. ..."
Davis, K. (2007). "Rethinking "Normal"." Hastings Center Report 37(3): 44-47.
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Dixon-Woods, M., E. Angell, et al. (2007). "Written work: The social functions of Research Ethics Committee letters." Social Science & Medicine 65(4): 792-802."In this paper, we argue that analysis of letters from RECs to researchers offers important insights into how RECs operate. We show that REC letters perform three important social functions. First, they define what is deemed by a REC to be ethical practice for any particular application, and confer authority on that definition. Second, they provide an account of the work of the REC, and function as a form of institutional display. Third, they specify the nature of the relationship between the REC and the applicant, casting the applicant in a supplicant role and requiring forms of docility. ..."
Dresser, R. (2007). "The Curious Case of Off-Label Use." Hastings Center Report 37(3): 9-11.
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Ehrich, K., C. Williams, et al. (2006). "Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic." Social Science & Medicine 63(5): 1213-1224."This paper explores how staff working in the area of in vitro fertilisation and preimplantation genetic diagnosis (IVF/PGD) balance reflexive relations of legitimacy and accountability between the public and private spheres, and between medicine, the citizen and the state. We argue that consideration of the welfare of the child involves staff in ethical boundary-work across the two orientations and between the accountabilities and responsibilities of healthcare professionals, individuals and the state. ..."
Falusi, A. G., O. I. Olopade, et al. (2007). "Establishment of a Standing Ethics/Institutional Review Board in a Nigerian University: A Blueprint for Developing Countries." Journal of Empirical Research on Human Research Ethics 2(1): 21-30. "These findings support our initial supposition that the development of a properly functioning IRB can be a catalyst for increased research productivity at academic centers in developing countries while ensuring the protection of vulnerable human research subjects. The University of Ibadan is now assisting other academic Institutions in Nigeria and sub-Saharan Africa with the establishment of their own IRBs. ..."
Faunce, T. and S. Jefferys (2007). "Abandoning the common law: medical negligence, genetic tests and wrongful life in the Australian High Court." J Law Med 14(4): 469-77.
"In an era when almost all pregnancies will soon require patented fetal genetic tests as part of the professional standard of care, the High Court, by barring so-called "wrongful life" (better termed "wrongful suffering") claims, may have created a partial immunity from suit for their corporate manufacturers and the doctors who administer them. What lessons can be learnt from this case about how the Australian High Court is, or should be, approaching medical negligence cases and its role as guardian of the Australian common law? ..."
Ferdinand, K. C. (2007). "Cardiovascular Disease and African Americans: Why Determination of Race Is Inadequate for Research and Practice." J Natl Med Assoc 99(6): 686."Although the implication may therefore be that race or ethnicity could theoretically be utilized as a primary marker for research and practice, clinicians and researchers should continue to use evidence-based medicine whenever possible. The current concept of race
itself remains flawed, and overreliance on this category may undervalue the benefit of other research, including the effects of socioeconomic status, geography, psychological stress and lifestyle. ..."
Ferrari, A. (2006). "Genetically modified laboratory animals in the name of the 3Rs?" Altex 23(4): 294-307.
"The purpose of this contribution is to show the need and the urgency for a systematic evaluation of genetically modified laboratory animals (GM animals) according to the 3Rs principle. In this article I discuss the significance of the procedures involving GM animals for each of the 3R principles. On this basis, I offer an answer to the question of whether these procedures are compatible with the spirit of the 3Rs. ..."
Fleming, J. M. (2007). "The governance of human genetic research databases in mental health research." International Journal of Law and Psychiatry 30(3): 182-190. "This article provides a brief overview of some of the ethical and legal challenges posed by human genetic research databases and their implications for how genetic research should be conducted in the field of mental health. ..."
Glass, K. C. and J. Kaufert (2007). "Research Ethics Review and Aboriginal Community Values: Can the Two be Reconciled?" Journal of Empirical Research on Human Research Ethics 2(2): 25-40. "In this paper, we explore these developments in the context of the political, legal and ethical frameworks that have informed REC review. We examine the process and content of these frameworks and ask how this contrasts with emerging Aboriginal proposals for community-based research ethics review. We follow this with recommendations on how current REC review models might accommodate the requirements of both communities and RECs. ..."
Greenfield, D. L. (2006). "Greenberg v. Miami Children 's Hospital: unjust enrichment and the patenting of human genetic material." Ann Health Law 15(2): 213-49, table of contents. "Individuals and societal groups are questioning the practice of patenting human genetic material in the context of medical research and health care, where diverse ethical, social, and political objections are being raised by critics. A recent case provides a broad legal theory, the common law cause of action, unjust enrichment, and a precedent for challenging the commercialization and patenting of human genetic material. ..."
"Our system of research self-regulation, designed to provide internal checks and balances for those who participate in research involving human subjects, is under considerable stress. Much of this crisis has been caused by what we call mission creep, in which the workload of IRBs has expanded beyond their ability to handle effectively. We recommend collecting data. We also call for refinements to our regulatory system that will provide a set of regulations designed for non-biomedical research. We recommend removing some kinds of activity from IRB review altogether. ..."
Haddow, G., G. Laurie, et al. (2007). "Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal." Social Science & Medicine 64(2): 272-282."In this article, we focus on the health;wealth benefits that DNA databases promise by considering the views of 10 focus groups on Generation Scotland, Scotland's first national genetic database. We argue for a less polarised approach that reconsiders what is meant by "public benefits" and questions the exclusivity of commercial interests. We believe accommodation can be achieved via the mobilisation of a grass roots solution known as;benefit-sharing; or a profit pay-off;. We propose a sociologically informed model that has a pragmatic, legal framework, which responds seriously to public concerns. ..."
Hansson, S. O. (2007). "The Ethics of Enabling Technology." Cambridge Quarterly of Healthcare Ethics 16(3): 257-267." The extent to which persons with impaired bodily functions are forced to live their lives differently than other people depends to a large part on a variety of technologies, from wheelchairs to computer interfaces, from hearing aids to garage doors. This wide-ranging influence of technology has important ethical aspects, but has seldom been discussed in bioethics, the ethics of technology, or other branches of applied ethics. ..."
Hatemi, P. K., S. E. Medland, et al. (2007). "The Genetics of Voting: An Australian Twin Study." Behavior Genetics 37(3): 435-448."Multivariate genetic analysis showed no unique genetic contribution to voting preference; rather, the genetic influence in vote choice could be explained by shared genetic influences in perceived social class, church attendance and certain key political attitude items. ..."
Hayes, I. M., V. Collins, et al. (2007). "Newborn screening for mucopolysaccharidoses: opinions of patients and their families." Clinical Genetics 71(5): 446-450. "Newborn screening for mucopolysaccharidoses: opinions of patients and their families. This study has identified strong support for the introduction of NBS for MPS from this group. Psychosocial benefits of screening may outweigh potential harms. ..."
Henderson, G. E., A. L. Corneli, et al. (2007). "Applying Research Ethics Guidelines: The View from a Sub-Saharan Research Ethics Committee." Journal of Empirical Research on Human Research Ethics 2(2): 41-48. "Qualitative content analysis demonstrated that international guidelines are interpreted in light of local African conditions such that emphasis is placed on examining benefit to the community and ensuring the informed consent process translates concepts in locally-meaningful ways. Members suggest that RECs often must comply with regulations that do not fit local conditions. Recommendations are provided for improving such international collaborations. ..."
Hoedemaekers, R., B. Gordijn, et al. (2007). "SOLIDARITY AND JUSTICE AS GUIDING PRINCIPLES IN GENOMIC RESEARCH." Bioethics 21(6): 342-350."This paper explicitly examines the question how, in genomic research, the principles of solidarity and justice can be used to justify forms of diminished individual control over personal data and bio-samples. We conclude with the formulation of a number of conditions that have to be met before autonomy sacrifices can be reasonably demanded in genomic research. ..."
Hunter, D. J. and P. Kraft (2007). "Drinking from the Fire Hose -- Statistical Issues in Genomewide Association Studies." N Engl J Med: NEJMp078120. "The amount of data in these studies is four to five orders of magnitude greater than that in the previous generation of case–control studies, which tested only a handful of variants, often in a specific candidate gene. This unprecedented volume poses unusual statistical challenges for the analysis, display, and interpretation of the data. ..."
Karla Eggert, et al. (2007). "Data protection in biomaterial banks for Parkinson's disease research: The model of GEPARD (Gene bank Parkinson's Disease Germany)." Movement Disorders 22(5): 611-618 "In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs. ..."
Kimberling, W. J. and A. F. Lindenmuth (2007). "Genetics, Hereditary Hearing Loss, and Ethics." Seminars in Hearing 28(3): 216-225."In this article, some of the ethical issues arising from the applications derived from the genome project are addressed in relation to hearing loss and the deaf community. An understanding of the issues involved will help in generating a meaningful dialogue about the balance of individual rights with the needs of society. ..."
Kleinveld, J. H., D. Timmermans, et al. (2007). "Does offering and performing prenatal screening influence women's attachment to their unborn child? A longitudinal randomized controlled trial." Prenatal Diagnosis 27(8): 757-764." Does offering prenatal screening and receiving a negative screening outcome influence wome;s attachment to their unborn child? Offering prenatal screening seems to temporarily increase attachment. However, this difference is very small. Attachment is not influenced by whether a blood screening or an ultrasound screening is performed. ..."
Lane, M. A., G. S. Roth, et al. (2007). "Caloric restriction mimetics: a novel approach for biogerontology." Methods Mol Biol 371: 143-50. "We first proposed the concept of caloric restriction (CR) mimetics in 1998. Since its introduction, this research area has witnessed a significant expansion of interest in academic, government, and private sectors. CR mimetics target alteration of pathways of energy metabolism to potentially mimic the beneficial health-promoting and anti-aging effects of CR without the need to reduce food intake significantly. To date, a number of candidate CR mimetics including glycolytic inhibitors, antioxidants and specific gene-modulators have been investigated and appear to validate the potential of this approach. ..."
Miller, F. G. and A. Wertheimer (2007). "Facing Up to Paternalism in Research Ethics." Hastings Center Report 37(3): 24-34."Bioethicists have failed to understand the pervasively paternalistic character of research ethics. Not only is the overall structure of research review and regulation paternalistic in some sense; even the way informed consent is sought may imply paternalism. Paternalism has limits, however. Getting clear on the paternalism of research ethics may mean some kinds of prohibited research should be reassessed...."
Modell, S. M. (2007). "GENETIC AND REPRODUCTIVE TECHNOLOGIES IN THE LIGHT OF RELIGIOUS DIALOGUE." Zygon(r) 42(1): 163-182."While differences in perspective on the beginning of life persist, a stepwise approach to the examination of genetic testing reveals areas of general agreement. Stewardship of life, human co-creativity with the divine, and social justice help define the bounds of application of genetic engineering and therapy; compassionate care plays a major role in establishing stem cell policy. Active, sustained dialogue is a useful resource for enabling sharing of religious values and crystallization of policies. ..."
Munger, K. M., C. J. Gill, et al. (2007). "The next exclusion debate: Assessing technology, ethics, and intellectual disability after the human genome project." Mental Retardation and Developmental Disabilities Research Reviews 13(2): 121-128."This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. ..."
Nilsson, K. W., R. L. Sjoberg, et al. (2007). "The monoamine oxidase A (MAO-A) gene, family function and maltreatment as predictors of destructive behaviour during male adolescent alcohol consumption." Addiction 102(3): 389-398."Bth maltreatment and MAO-A genotype may be useful for the understanding of male adolescent alcohol-related problem behaviour. ..."
Nørgaard-Pedersen, B. and D. Hougaard "Storage policies and use of the Danish Newborn Screening Biobank." Journal of Inherited Metabolic Disease." No specific Act on biobanks per se has been made in Denmark, but the new regulations and guidelines make the operations of the Danish NBS-Biobank even more clear-cut and safe. The Danish NBS-Biobank has been used in several research projects for aetiological studies of a number of disorders, recently employing new sensitive multiplex technologies and genetic analyses utilizing whole-genome amplified DNA. ..."
Plemmons, D. K. and M. W. Kalichman (2007). "Reported Goals For Knowledge to be Learned in Responsible Conduct of Research Courses." Journal of Empirical Research on Human Research Ethics 2(2): 57-66 "Despite a shared sense of the basics to be taught in RCR courses, these instructors were diverse in their views and understanding of goals for RCR education. This diversity suggests a challenge to be overcome not only for improving the effectiveness of RCR education, but also for attempts to assess that effectiveness. ..."
Rosenzweig, A. (2007). "Scanning the Genome for Coronary Risk." N Engl J Med: NEJMe078121. "The identification of genetic contributors to coronary disease could provide more precise estimates of risk while defining the pathways important in individual patients, revealing new targets for intervention, and ultimately enabling a personalized approach to care. ..."
Roux, F. A., P. Sai, et al. (2007). "Some ethical issues regarding xenotransfusion." Xenotransplantation 14(3): 217-221."The purpose of this paper is to compare some ethical issues regarding xenotransfusion (XTF) with those relating to xenotransplantation (XT) of organs, tissues and cells. . ..."
Sade, R. M. (2007). "What’s Right (and Wrong) with Racially Stratified Research and Therapies " J Natl Med Assoc 99(6): 693."At first blush, it seems odd to find fault with research that can lead to such positive results. But critics of the study and of the FDA approval of the drug for use only in blacks found plenty to criticize. The criticisms are, to some extent, valid, but some are aimed at the wrong target, and some are true but not relevant to this issue. Considering all of the criticisms together, they are not, in my opinion, sufficient to condemn the BiDil study nor to inhibit similar race-based research in the future. The objections can be roughly divided into three general categories, with much overlap between them: biological-scientific, marketing-financial and social. ..."
Steinberg, A. G., G. Kaimal, et al. (2007). "Parental narratives on genetic testing for children with hearing loss: A qualitative inquiry." American Journal of Medical Genetics Part A 143A(14): 1533-1545." In this qualitative study we conducted semi-structured interviews with 24 parents whose children had been referred for, but had not yet undergone, genetic testing for hearing loss. Genetics and genetic testing for hearing loss were poorly understood topics. Beyond supporting or opposing genetic testing for hearing loss, parents construction of meaning included struggles to locate responsibility (metaphysical attributions, ascription or alleviation of parental responsibility) as well as questions about the usefulness and implications of genetic testing for hearing loss in their child. ..."
Tercyak, K. P., B. N. Peshkin, et al. (2007). "Interest in Genetic Counseling and Testing for Adolescent Nicotine Addiction Susceptibility among a Sample of Adolescent Medicine Providers Attending a Scientific Conference on Adolescent Health." Journal of Adolescent Health 41(1): 42-50."This study describes adolescent medicine providers' interest, and correlates of their interest, in genetic counseling and testing for nicotine addiction susceptibility among their adolescent patients--a test that is not yet clinically available. ..."
Therrell, B. and J. Adams "Newborn screening in North America." Journal of Inherited Metabolic Disease."With impetus from private laboratories and professional and consumer groups, many US programmes now screen for more than 50 conditions and there is increased expansion activity in Canada. NBS research in the USA is focused on improving system efficiency and translating other genetic testing to NBS, particularly where new technologies and treatment therapies exist. Although national newborn screening policies do not exist in either Canada or the USA, there are intense efforts to provide uniform access to screening nationwide in both countries. . ..."
Tutton, R. (2007). "Constructing Participation in Genetic Databases." Science, Technology, & Human Values 32(2): 172-195."This paper discusses the discourse of participation in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. ..."
Van Hilvoorde, I., R. Vos, et al. (2007). "Flopping, Klapping and Gene Doping: Dichotomies Between Natural and Artificial in Elite Sport." Social Studies of Science 37(2): 173-200."This paper explores the role of genetic technology in elite sport and questions the significance of dichotomizing between the natural and artificial element. How do shifts in technology affect the attribution of the human element in athletic performance? ..."
Van Hoyweghen, I., K. Horstman, et al. (2006). "Making the normal deviant: The introduction of predictive medicine in life insurance." Social Science & Medicine 63(5): 1225-1235."Based on ethnographic fieldwork in two Belgium insurance companies, this study analyses the ways insurers account for predictive medicine (lifestyle, genetics) during underwriting. We demonstrate how insurers highlight predictive lifestyle health information and how this articulates with a fault based approach in underwriting. Individual responsibility for health risks becomes the golden standard for assessing one's fitness for membership of the insurance pool. ..."
Varzakas, T. H., I. S. Arvanitoyannis, et al. (2007). "The Politics and Science Behind GMO Acceptance." Critical Reviews in Food Science and Nutrition 47(4): 335 - 361. "The GMO issue will be the issue for discussion in the long run not only for the European Community but also for the international community as far as scientific, economical, political, ideological, ethical, and human issues are concerned. These issues are discussed in this paper along with a case of study of GM fish. ..."
Veenstra, D. L. (2007). "The cost-effectiveness of warfrin pharmacogenomics." J Thromb Haemost.
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Whitehead, L. C. (2007). "Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature." Social Science & Medicine 65(4): 782-791."This paper contributes to the ongoing development of quality standards in the conduct and write-up of Internet-mediated research in the field of health. ..."
Widdows, H. (2007). "IS GLOBAL ETHICS MORAL NEO-COLONIALISM? AN INVESTIGATION OF THE ISSUE IN THE CONTEXT OF BIOETHICS." Bioethics 21(6): 305-315."This paper considers the possibility and desirability of global ethics in light of the claim that global ethics; in any form is not global, but simply the imposition of one form of local ethics Western ethics and, as such, a form of moral neo-colonialism. ..."
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