Center NewsMichelle McGowan and Marcie Lambrix will be presenting at the Dept. of Bioethics "Works in Progress"
Thursday, September 3, 2009, 11:30am-1:00pm in SOM T501 on
"Motivations and Moral Imperatives of Early Adopters of Personal Genome Services." Pei Koay is the Program Manager, Biotechnology History and Policy, Center for Contemporary History & Policy (CCHP), The Chemical Heritage Foundation (CHF), Philadelphia, PA.
OpportunitiesPolicy, Ethics and Life Sciences (PEALS) Research Centre You will work with Professor Erica Haimes, the Principal Investigator and Professorial Fellow at PEALS, on a project entitled, ‘The provision and acquisition of reproductive tissue for stem cell research: engendering, promoting and applying interdisciplinary contributions to policy and practice’. Further particulars can be obtained from Tom Martin, at tom.martin@ncl.ac.uk
INSTITUTE FOR ADVANCED STUDIES
ON SCIENCE, TECHNOLOGY & The IAS-STS is broadly speaking, an institute for
the enhancement of science and technology studies. For application forms and further information: Please visit our website: www.sts.tugraz.at Call For Abstracts
Conferences & MeetingsDirect to Consumer Genetic Testing: A Cross-Academies Workshop History of Genetics Conference Biobanking 2009 NCHPEG: Genetics Education for Health Professional: ASBH Annual Meeting The New Sentinels of Progress: Investigating Emerging Approaches to Governing Technology
ResourcesCenters for Excellence in ELSI Research (CEER) Bibliographic database of audiovisuals, books, and articles, many of which are indexed using the Bioethics Thesaurus for Genetics.
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Genetics in the News
Faster, cheaper way to find disease genes in human genome passes initial test "Method makes it feasible to search for disease genes in unrelated people with same condition ..."
Cost of Decoding a Genome Is Lowered - NYTimes.com "An engineer has invented a new technology for decoding DNA and used it to decode his own genome for less than $50,000. The engineer says the low cost “will democratize access to the fruits of the genome revolution” by enabling many labs and hospitals to decode whole human genomes. ..."
Genome smuggling is step towards synthetic life -New Scientist"Genome-sequencing pioneer Craig Venter and his team have devised a way of smuggling an "alien" genome into unwitting bacterial cells. The new technique takes the scientists one step closer to their goal of creating novel microorganisms with entirely synthetic genomes. ..."
Synthetic biology -- opportunities and risks "The new research field of synthetic biology will, in the medium term, open up a great deal of potential for combining novel genetic methods with engineering principles. ..."
Microbes ‘R’ Us - NYTimes.com"Yet it’s only now, with the revolution in biotechnology, that we’re able to do detailed studies of which microbes are there, which genes they have, and what they’re doing. We’re just at the start, and there are far more questions than answers. But already, the results are astonishing, and the implications profound. ..."
Child DNA donors should have their say : Nature News "Bioethicists argue for stricter rules at genetic repositories. ..."
The Role for Science in Regulatory Policy : ScienceInsider "An expert panel today suggested ways to improve how U.S. regulatory agencies use input from outside scientists. Their recommendations urge the government to be more transparent in selecting and vetting experts, clearer in defining what questions it wants answered, and more rigorous in reviewing the relevant literature. ..."
In China, DNA tests on kids ID genetic gifts, careers - CNN.com "At the Chongqing Children's Palace, experts are hoping to revolutionize child-rearing with the help of science. About 30 children aged 3 to 12 years old and their parents are participating in a new program that uses DNA testing to identify genetic gifts and predict the future. ..."
Genetics in the Literature
Boddington, P. (2009). "The ethics and regulation of direct-to-consumer genetic testing." Genome Med. 1(7): 71.
"A report of the workshop 'Direct-to-consumer genetic testing: ethical and regulatory issues', Oxford, UK, 21 May 2009. ..."
"Research involving human participants continues to grow dramatically, fueled by advances in medical technology, globalization of research, and financial and professional incentives. This creates increasing opportunities for ethical errors with devastating effects. The typical professional and policy response to calamities involving human participants in research is to layer on more ethical guidelines or strictures. We used a recent case--the Johns Hopkins University/Kennedy Kreiger Institute Lead Paint Study--to examine lessons learned since the Tuskegee Syphilis Study about the role of institutionalized science ethics in the protection of human participants in research. We address the role of the institutional review board as the focal point for policy attention. ..."
"Purpose: To examine public health educators' perceptions of barriers to incorporate genomic content (information, discoveries, technologies) into health promotion. Methods: Mixed methods (qualitative and quantitative approaches)-using a fully mixed sequential dominant status design-were employed. Qualitative data were collected from a convenient sample of 24 public health educators, through personal interviews. Quantitative data, from a nation-wide sample of 1607 professionals (from four professional organizations/groups), were collected through a Web-based survey (adjusted response rate = 23.1%). Content analysis guided the interpretation of the qualitative data; descriptive statistics were used to analyze the survey data and to compare prevalence of themes across the qualitative and survey samples. Results: Specific barriers highlighted by the qualitative and the survey samples included lack of genomic knowledge (basic and applied), having to deal with the lay public's reaction, lack of priority, time and resources, and incompatibility between genomics and public health educators' religious and ethical beliefs. Conclusion: This study suggests that public health educators perceive numerous barriers to incorporating genomics into health promotion. More research is needed to confirm this study's findings, to explore potential sources, and to propose viable strategies to overcome many of these barriers. (C)2009The American College of Medical Genetics ..."
"The main purpose of this paper is to draw attention to an important part of Habermas’ critique of genetic enhancement, which has been largely ignored in the discussion; namely his use of Kierkegaard’s reflections on the existential conditions for becoming one-self from Either/or and the Sickness unto Death. It will be argued that, although Habermas presents some valuable and highly significant perspectives on the effect of genetic enhancement on the individual’s self-understanding and ability to experience him- or herself as a free and equal individual, he does not succeed in working out a consistent argument. The claim is that he fails to explain how the existential analysis is related to his reflections on the sociological and psychological impacts of genetic enhancement in the realm of communicative action. ..."Coors, M. E. and K. M. b. Raymond (2009). "Substance use disorder genetic research: investigators and participants grapple with the ethical issues." Psychiatric Genetics 19(2): 83-90.
"This qualitative research examined the ethical concerns regarding the psychosocial issues, research design and implementation, and application of psychiatric genetic research on substance use disorders (SUD) from multiple perspectives Investigators and the literature expressed similar concerns regarding the ethical concerns associated with psychiatric genetic research including violation of privacy, misunderstanding about psychiatric genetics, stigmatization, commercialization, discrimination, eugenics, consequences of research on illegal behavior, unforeseen consequences, altered notion of individual responsibility, and others. Patients and their relatives showed little familiarity with the ethical issues as identified by professionals and little concern regarding most of the potential risks. The exception was apprehension associated with potential criminal justice uses of stored genetic information, in particular enforced therapy and stigmatization, which elicited some concern from all perspectives., Conclusion: The challenge for further research is to identify risks and benefits of SUD research that are germane in a behaviorally disinhibited population and devise effective tools to communicate information to participants through an improved informed consent process ...""This raises the question whether parents should be allowed to use this technology to engineer their children as they please. In this context it is often thought and argued that liberalism, which has a reputation for being permissive of all kinds of practices, grants parents the right to do so. However, I will argue that, on an understanding of liberalism that is identical to the one used by the defenders of genetic design, liberals should wary of such practices. Liberalism, in its most general form, requires that any time individuals exercise power over others they justify it without relying on any particular conception of what a good life is. When we design children to have certain traits that are only useful for realising some conceptions of the good life, we are implicitly endorsing those conceptions. Hence this practice cannot be justified in neutral terms, and liberals should be sceptical of it. Only when we engineer our children to have traits that are useful for all conceptions of the good life can liberals allow the use of this new technology. Indeed, liberalism holds that this is morally required. ..."
Feero, W. G. (2009). "A genome's home: genomics and health care reform." Jaapa. 22(3): 58-9.
"The attraction of human genetics is rooted in optimistic projections of possible futures, where present-day problems are to be solved by technologies-to-come. But hyperbolic optimism with its consequent cycles of expectations, investment and disappointment is a threat to users, investors, and the ethical reputation of the biotechnology field. We report a study of the entire news coverage of genetics in Icelandic mass media in 2000 and 2004. All media promoted optimistic industry-based information largely without critical questions concerning scientific uncertainty, health benefits, or ethical challenges. Criticism and deliberation were thematically narrowed down, in 2000 to the issue of “presumed consent†for nationwide participation in a database proposed by the company Decode genetics, and in 2004 to topics concerning Decode's finances. In a discourse of monetary gain and loss, sustained exploration of scientific, moral and cultural issues has little appeal. ..."
"The rapid pace of research advances in neuroscience and genetics has given rise to a new field of study, neuroethics, which seeks to explore the moral questions that arise from the use of new brain-based therapies and from our growing understanding of the biology of human behavior, cognition, and emotion. The authors present an overview of selected topics in neuroethics that may be of special interest to psychiatrists, including a discussion of how genetics and functional neuroimaging have added nuance and complexity to mind/body dualism, the concept of free will, and the proper role of emotion in morality. Other topics include the use of brain-based therapies such as neuromodulation, psychopharmacology, and genetic technologies as enhancements to normal mental functioning. ..."
"The study used an innovative virtual reality technology experimental platform; four virtual worlds were designed to convey the concept that genetic and behavioral factors interact to affect common disease risk. The results indicated that the elevator metaphor better supported learning of the concept than the bridge metaphor. The results suggested that active learning might not always be more effective than didactic learning in increasing comprehension of health information. The findings also indicated that less complex metaphors might convey abstract concepts more effectively. ..."
"Drawing on empirical research with pregnant women and their male partners in a northern city in the UK, this paper aims to explore the gendered nature of genetic responsibility in prenatal blood screening. The paper will argue that women and men feel a sense of genetic responsibility for the fetus throughout screening. However, while women's sense of responsibility is directly 'embodied' and is heightened by the detection of 'faulty genes', men's manifests itself indirectly through shared responsibility with their pregnant partners and directly through their own genetic connections to the fetus. The paper concludes that the gendered nature of genetic responsibility is complex and contradictory, producing a set of gender roles that both challenges and reinforces a traditional gender division of labour. ..."
"TThe clinical validity and utility of personal genomics is a moving target with rapidly developing discoveries but little translation research to close the gap between discoveries and health impact. Workshop participants made recommendations in five domains: (1) developing and applying scientific standards for assessing personal genomic tests; (2) developing and applying a multidisciplinary research agenda, including observational studies and clinical trials to fill knowledge gaps in clinical validity and utility; (3) enhancing credible knowledge synthesis and information dissemination to clinicians and consumers; (4) linking scientific findings to evidence-based recommendations for use of personal genomics; and (5) assessing how the concept of personal utility can affect health benefits, costs, and risks by developing appropriate metrics for evaluation. To fulfill the promise of personal genomics, a rigorous multidisciplinary research agenda is needed. ..."
"Despite the paucity of studies in this area, published studies have provided considerable evidence of the influence of genetic factors on PG and its complex interaction with other psychiatric disorders and environmental factors. The next step would be to investigate the association and interaction of these variables in larger molecular genetic studies with subphenotypes that underlie PG. Results from family and genetic investigations corroborate further the importance of understanding the biological underpinnings of PG in the development of more specific treatment and prevention strategies. ) ..."
"Purpose: To evaluate what psychological and behavioral factors predict who is likely to seek SNP-based genetic tests for multiple common health conditions where feedback can be used to motivate primary prevention. Methods: Adults aged 25-40 years who were enrolled in a large managed care organization were surveyed. Those eligible could log on to a secure study Web site to review information about the risks and benefits of a SNP-based genetic test and request free testing. Two primary outcomes are addressed: accessing the Web (yes or no) and deciding to be tested (completed a blood draw at the clinic) Results: Those considering genetic susceptibility testing did not hold genetically deterministic beliefs (0.42 on scale of 0 [behavior] to 1 [genetic]) but believed genetic information to be valuable and were confident they could understand such information. Individuals who believed it important to learn about genetics (odds ratio = 1.28), were confident they could understand genetics (odds ratio = 1.26), and reported the most health habits to change (odds ratio = 1.39) were most likely to get tested. Conclusions: Individuals who present to health care providers with online genetics information may be among the most motivated to take steps toward healthier lifestyles. These motives might be leveraged by health care providers to promote positive health outcomes. ..."
Miller, F. A. (2009). "The complex promise of newborn screening." Indian J Med Ethics. 6(3): 142-8.
"India faces pressure to expand infant screening, though developments have been halting. The promise of newborn screening is the reduction of infant mortality and morbidity from a host of rare, typically genetic, disorders. Deciding what priority should be placed on the realisation of this promise, together with the practical challenge of coordinating the screening enterprise, requires the use of decision making frameworks that address both clinical criteria and values conflicts. Frameworks for public health ethics can aid sound policy development in India, and help to inform the larger international debate about the expansion and benefits of NBS. ..."
Moyer, T. P. and J. Yeo (2009). "The future of laboratory testing moves toward pharmacogenomics." MLO Med Lab Obs. 41(7): 30, 32, 34.
"Philosophical anthropologies that emphasise the role of the emotions can be used to expand existing notions of moral agency and learning in situations of great moral complexity. In this article we tell the story of one patient facing the tough decision of whether to be tested for Huntington’s disease or not. We then interpret her story from two different but compatible philosophical entry points: Aristotle’s conception of Greek tragedy and Karl Jaspers’ notion of Grenzsituationen (boundary situations). We continue by indicating some ways in which these two positions may be used for reflecting upon different perspectives involved in clinical decision-making, those of patients, clinicians and bioethicists. We conclude that the ideas we introduce can be used as hermeneutic tools for situating learning and dialogue within a broader cultural field in which literature and art may also play important roles. ..."
"The U.S. Food and Drug Administration modified warfarin labeling in 2007 to suggest, but not mandate, pharmacogenetic testing. Genetic analysis is now commercially available. However, results predict only one third of all dosing variation, the value of testing in reducing bleeding and thrombosis rates remains unproved, and cost-effectiveness is not established. Careful consideration of clinical factors that influence dosing, conscientious prothrombin time monitoring, and sage dosage adjustment remain paramount in warfarin management. Further study is required before routine warfarin pharmacogenetic testing can be recommended. ..."
"In populations with a high prevalence of BRCA1/2 founder mutations, genetic screening may be cost-effective when compared with recommended public health interventions such as mammographic screening. We advocate the initiation of a dialogue among Jewish stakeholders, genetics professionals, and public health leaders to determine whether a population-based BRCA1/2 genetic screening program should be pursued. ..."
"This article examines and discusses the ethical, medical and legal considerations that arise from the operation of umbilical cord banks in Mexico. Conflicts between moral principles and economic interests (non-moral principles) cause dilemmas in the clinical practice of umbilical cord blood storage and use especially in privately owned banks. This article presents a reflection and some of the guidelines that must be followed by umbilical cord banks in order to deal with these conflicts. This reflection is based on the fundamental notions of ethics and public health and seeks to be a contribution towards the improvement of umbilical cord banks' performance. ..."
"This paper reports on a survey of human biotechnology organizations in Australia. The study provides insights into the nature, use and practices involved with human genetic databanking in the country. The survey was conducted at a time when databanks were becoming increasingly important to an expanding genomics industry, and while the nature and extent of industry regulation was being debated. The data revealed a surprising level of confusion and inconsistency in the interpretation of terminology and in ethical practice, even among those organizations subject to the relevant government ethics guidelines. It is argued that despite the extensive level of public consultation, recommendations for reform and actual reform in the intervening years, human genetic databanking remains an under-regulated sector of the human biotechnology industry in Australia, and at least as far as the private sector is concerned, will remain so in the foreseeable future. ..."
"I first argue that the concept of a genetic predisposition fundamentally misconstrues these cases of gene-environment interaction. This misconstrual will be diagnosed, and then a new concept--interactive predisposition--will be introduced. I then show how this conceptual shift reconfigures old questions and raises new questions for genetic screening. Attempts to screen embryos or fetuses for the gene associated with low neuroenzymatic activity with an eye toward selecting against the low-activity variant fall prey to the myth of pre-environmental prediction; attempts to screen newborns for the gene associated with low neuroenzymatic activity with an eye toward early intervention will have to face the interventionist's dilemma. ..."
"I use the Singapore Consortium for Cohort Studies as a site to examine the question: how are populations figured in bioeconomic development? To put it another way, what are the biopolitics of the bioeconomy? The Singapore example is telling, both because the rate of bioeconomic development is so startling and because it forms an explicit element in the state's attempt to reposition the national population in the global economy. ..."
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