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Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University
Call for papers Transhumanism and Religion Consultation Chicago, IL Due February 25, 2008
Call for papers Winchester, UK Due February 28, 2008 Call for papers - New! Making Sequences Matter: Collecting, Comparing, Computing
Call for Papers Special Issue Law & Technology Journal: Science and the Courts Due March 1, 2008 Call for applications - National Institutes of Environmental Health Due March 1, 2008 Call for Papers Rocky Mountain Ethics Congress Due March 1, 2008 Call for Papers World Congress of Bioethics 2008 Extended: Due March 1, 2008 Call for Papers Due March 1, 2008 Call for Papers Crossing Borders in the History of Technology Victoria, B.C. Due March 3, 2008 Call for Applications - Robert Wood Johnson Foundation Due March 26 Genomics and Society: Setting the Agendas April 18-19, 2008 Rutgers University
What's The Use of Race? Call for Papers Special Issue: Bioethics - Ethical Implications of Social Determinants of Health Due May 1, 2008 Translating “ELSI”: International Congress on Call for Papers Society for Disability Studies Annual Conference Congress of Qualitative Inquiry: Ethics, Evidence and Social Justice May 14-17, 2008 University of Illinois at Urbana-Champaign Genetics, history and public understanding May 30-31 , 2008 Barcelona, Spain Genotyping and Association Studies: Technologies, Approaches and Applications - June 9-10, 2008 San Francisco, CA Public Health Genomics Institute Course - June 10-12, 2008 Emory University Governing Biobanks – What are the challenges? June 23-26, 2008 Oxford, UK Three Societies 2008 -
Connecting Disciplines July 6-8, 2008 Oxford UK Rocky Mountain Ethics Congress Boulder, Colorado 4S/EASST: Acting with science, technology and medicine Rotterdam, The Netherlands August 20-23, 2008 Proto-Eugenic Thinking before Galton - Washington DC Making Race, Making Health: Historical Approaches to Race, Medicine, and Public Health November 13-15, 2008 Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission. ResourcesCenters for Excellence in ELSI Research (CEER)
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Genetics in the News
Illumina unveils genome sequence of African male ( Nature News) "Scientists have already sequenced the genomes of two Caucasian men and one Chinese man, but Illumina's is the first African genome. It came from an anonymous Yoruban man from Nigeria. ..."
DNA Study Supports African Origin of Man (New York Times) "A new genetic analysis of people from around the world adds further confirmation to the African origin of humans. ..."
DNATraits "Family Tree DNA have launched a new service called DNATraits to examine a customer’s DNA for evidence of genetic disease. The twist: you to choose the genetic tests you want from an online catalog. Notably, the process of returning the results to the consumer appears to be different from some other companies. ..."
Disease Prone? Spit Could Let You Know. ABC News. "Company Offers DNA Results Without Personal Counseling, Fans Debate ..."
Daily Women's Health Policy Report: Myriad's Direct-to-Consumer Ad Campaign Increases Sales of Breast Cancer Gene Test" Myriad Genetics recently announced that its direct-to-consumer advertising campaign has increased sales of its breast cancer genetic test and that the company is considering expanding the campaign ..."
deCODE Launches PrCa Prostate Cancer DNA Test (Eye On DNA) "There is a strong market for prostate cancer testing. Screening, however, is controversial. ..."
Genetic 'Junk' Could Answer Riddle of Vertebrate Evolution (Wired) "Why aren't you a spineless sack of protoplasm? Because of a little-known molecule called microRNA. ..."
Aggressive breast cancer among African Americans in the Chesapeake Bay...can ancestry in Africa explain this? (Yann Klimentidis' Weblog) "They discuss this at the "microethnic" scale as they call it, discuss the historical evidence, and narrow it down to the Bight of Bonny. ..."
Boost for Off-Label Drug Use (WSJ) "The Food and Drug Administration wants to allow drug companies to give doctors information about unapproved uses of prescription drugs, a controversial move that is already drawing objections from Capitol Hill. ..."
The Race to Read Genomes on a Shoestring, Relatively Speaking (New York Times) "If the cost of sequencing a human genome can drop to $1,000 or below, experts say it would start to become feasible to document people s DNA makeup to tell what diseases they might be at risk for, or what medicines would work best for them. ..." [Related: Pacific Bio lifts the veil on its high-speed genome-sequencing effort (VentureBeat) "Although the $1,000 genome is a purely arbitrary goal, it s become a Holy Grail of sorts for the genomics field. ..."]
Regimens: Diet Supplement Seen as Risky for Some Users (New York Times)
"Probiotics, the potentially beneficial bacteria and yeasts available as diet supplements and in some foods, may not be as helpful as widely believed. ..."
Gentlemen, 5 Easy Steps to Living Long and Well ( New York Times)
"Living past 90, and living well, may be more than a matter of good genes and good luck. Five behaviors in elderly men are associated not only with living into extreme old age, a new study has found, but also with good health and independent functioning. ..." [Related: Genetic pathway critical to disease, aging found "The same chemical reaction that causes iron to rust plays a similarly corrosive role in our bodies. ..."]
Researchers find that identical twins don't necessarily have identical genetics "In a scientific double-take, new research is challenging the long-held belief that identical twins have identical genetics ..."
BeInSpace: An open portal life preservation project "Now you can cultivate humanity beyond earth and spread life from one planet to another by delivering your digital data and DNA into outer space. ..."
Genetics in the Literature
(2008). "Genetics benefits at risk." Nature 451(7180): 745-746.
"A rogue senator needs to be bypassed. ..."
"To evaluate current guidelines criteria for inclusion of women in special 'breast cancer family history' surveillance programmes, records were reviewed of women referred to Scottish breast cancer family clinics between January 1994 and December 2003 but discharged as at 'less than 'moderate' familial risk'. . ..."
"Due to the fact that aminoglycosides, blood transfusions, nothing by mouth status, and the presence of heparinized solutions all potentially affect the screening results, NBS guidelines in neonatal intensive care units (NICUs) ought to be changed to obviate inaccurate results. ..."
"Aim To assess the progress and impact of genetic studies in the addictions arenaby review of the evidence that genes are involved in addiction, approaches to their identification, current findings and the potential implications. Addiction genetics is a developing science that has yet to prove its worth in the clinical setting ..."
"OBJECTIVES: To estimate the cancer rate among FACC and BLM(Ash) carriers and their families over three previous generations in unselected Ashkenazi Jewish individuals. We found no significantly increased prevalence of malignancies among carriers in at least three generations compared to the controls. ..."
"In this overview, current knowledge of the host immune response to DNA vaccines is summarized in the introduction. The subsequent sections discuss techniques for enhancing DNA vaccine efficacy, such as DNA delivery to specific tissues, delivery of DNA to the cell cytoplasm or nucleus, and enhancement of the immune response using molecular adjuvants. Finally, the prospects of DNA vaccination and ongoing clinical trials with various DNA vaccines are discussed. ..."
"Our aim was to assess the effects of probiotic prophylaxis in patients with predicted severe acute pancreatitis. In patients with predicted severe acute pancreatitis, probiotic prophylaxis with this combination of probiotic strains did not reduce the risk of infectious complications and was associated with an increased risk of mortality. Probiotic prophylaxis should therefore not be administered in this category of patients. ..."
"The purpose of this study was to assess differences in stroke cohort characteristics between those who provided informed consent and those whose enrollment was authorized by surrogate decision makers. Overall, 10% (54 of 517) were enrolled using surrogate authorization. Failure to permit surrogate authorization in genetic studies of ischemic stroke may skew enrollment toward less severe strokes caused by smaller infarcts. This potential consent bias may undermine the ability to identify genetic determinants of risk and severity and suggests that surrogate enrollment in these studies can be ethically justifiable. ..."
"Microbiologists have a long tradition of storing microorganisms as part of projects focused on microbial genetics or phenotypic investigations. However, the impressive recent advances of biomedical translational research demand the integration of biobanks with high-level technological infrastructures in genomics, proteomics, bioinformatics, patient information systems and disease registries, where data originating from microorganisms are linked with human clinical information with the ultimate aim of improving healthcare by increasing the quality of biomedical research. ..."
"During the last decade screening has become increasingly subject to central control. Though a more consistent and systematic approach was clearly needed, this has undoubtedly slowed the rate of innovation. In particular the UK has lagged behind many other European countries in the application of tandem mass spectrometry (MS-MS). Attempts to codify clinical and laboratory procedures have also proved controversial, highlighting marked differences in practice in various parts of the country and the difficulty of rationalizing these within a practicable and scientifically justified framework. Notwithstanding this, there are many positive developments and newborn screening remains a stimulating and rewarding field in which to work. ..."
Ellis, J. J. (2000). "Jefferson: post-DNA." William Mary Q 57(1): 125-38.
"We hypothesize that the mutant HD allele elevates carriers' immune activity and thus HD+ individuals are, on average, healthier than HD- individuals during reproductive years. As health and reproductive output are positively related, data suggest a counterintuitive relationship: health benefits may lead to an increased prevalence of Huntington's disease. ..."
Evans, J. P. (2008). "Health care in the age of genetic medicine." Genet Med 10(1): 1-3.
"In Taiwan, the challenge is even more serious than for any other biobanking experiences that have occurred previously. Among all the ethical, legal and social issues, the convergence of aboriginal people protection provided under Taiwan’s Constitution imposes on the research team an obligation to create an innovative Ethical & Legal Governance Framework adaptable to the unique social background of Taiwan, including a workable public consultation/communication mechanism. In early 2005, the creation of the ‘Taiwan Biobank’ has been included as a part of Taiwan’s strategic development in promoting the country as an island of biomedicine. In this report, the ideology, the goals and special features, government strategy, visions and, in particular, the ethical, legal and social issue planning of the Taiwan Biobank will be briefly introduced and reviewed. ..."
" This guideline is designed primarily as an educational resource for medical geneticists and other health care providers to help them provide quality medical genetic services. Adherence to this guideline does not necessarily assure a successful medical outcome. This guideline should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, the geneticist should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient or specimen. It may be prudent, however, to document in the patient's record the rationale for any significant deviation from this guideline. ..."
"Among the many ethical issues raised by human embryonic stem cell research (in the following all references to 'stem cells' should be read as references to human embryonic stem cells), two have gained specific prominence: (1) whether stem cell research is ethically problematic because it entails the destruction of human embryos and (2) what kind of control embryo donors should have over the stem cell lines derived from their embryos. In the present paper, I will analyse how these two issues are engaged by various attempts to derive stem cells from anomalous embryos (e.g. embryos in cleavage arrest, embryos not implanted following pre-implantation genetic diagnosis or embryos created by altered nuclear transfer) or in ways that are claimed to be non-destructive for the embryo (e.g. blastocyst or blastomere biopsy). ..."
"Just how racial/ethnic categories are conceptualized, operationalized, and interpreted is a key consideration in determining the legitimacy of their use, but has received little attention. We conducted semi-structured, open-ended interviews with 30 human genetics scientists from the US and Canada who use racial/ethnic variables in their research. They discussed the types of classifications they use, the criteria upon which they are based, and their methods for classifying individual samples and subjects. We found definitions of racial/ethnic variables were often lacking or unclear, the specific categories they used were inconsistent and context specific, and classification practices were often implicit and unexamined. We conclude that such conceptual and practical problems are inherent to routinely used racial/ethnic categories themselves, and that they lack sufficient rigor to be used as key variables in biological research. It is our position that it is unacceptable to persist in the constructing of scientific arguments based on these highly ambiguous variables. ..."
"Cross-sectional survey, random and total samples of GPs in five European countries to assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics. A total 1168 GPs answered. Priorities differed but were consistently ranked across the countries. Expressed genetic educational needs vary according to the countries and sociodemographics. ..."
Kimmelman, J. (2008). "The ethics of human gene transfer." Nat Rev Genet 9(3): 239-244.
"While medical therapies aim at reversing, reducing or eliminating diseases, the goal of enhancements is to improve performance or appearance beyond normal levels. Distinction between the two interventions is not always clear as they often present as a continuum. Gene therapy typically aims at treating or preventing disease, but the technology can theoretically be employed for enhancement. Some of the gene therapy enhancement strategies include improving performance by increasing muscle mass, endurance, memory, and cognition and bettering appearance by controlling weight, height and hair growth. In addition to the technical challenges of making enhancement strategies safe and effective, genetic enhancement presents significant ethical/societal questions that must be addressed. ..."
"This review focuses on research articles that serve to emphasize the potential role of using genotyping as a tool to develop individualized patient treatment regimens for asthma, thus improving outcomes and limiting adverse effects of certain therapies. ..."
"Along with other 'omic' technologies, advances in nutritional genomics are likely to lead to increasing personalization in the area of nutrition, diet and health. The power of nutrients to modulate the toxicity of environmental pollutants and the importance of nutritional status in determining longer-term health outcomes may be of major benefit in occupational health and preventive medicine. Advances in metabolomics offer the promise of validating important intermediate and surrogate markers for use in medical monitoring. ..."
"We aimed to compare the psychosocial conditions of women awaiting genetic counseling with those of women in two reference groups. We included 567 women referred to genetic counseling for hereditary risk of breast or ovarian cancer (Genetic Group), 689 women referred to mammography (Mammography Group) and a random sample of 2,000 women from the general population (Population Group). Both women affected with cancer and unaffected women in the Genetic Group appeared to have a somewhat higher prevalence of cancer-specific-distress than the corresponding reference groups. Further research on the effect of pre- counseling interventions appear warranted in addition with exploring a potential association between waiting time and cancer-specific distress. ..."
Mills, C. (2008). "GENETIC SCREENING AND SELFHOOD." Australian Feminist Studies 23(55): 43-55.
"The article offers a discussion on the alternative theoretical focus for bioethical inquiry through the illustration of the concept of singularity's potential importance. Through this illustration of the potential importance of the concept of singularity, the author has been able to provide an explanation to all the transformations at stake concerning the recent biotechnological interventions. Moreover, the author also explores the recent debates on pre-implantation genetic diagnosis (PGD), an approach used on in vitro fertilization treatments for the screening of embryos for possible genetic diseases. ..."
"Recent progress in the field of the stem cell research has given new hopes to treat and even cure diverse degenerative disorders and incurable diseases in human. Particularly, the identification of a rare population of adult stem cells in the most tissues/organs in human has emerged as an attractive source of multipotent stem/progenitor cells for cell replacement-based therapies and tissue engineering in regenerative medicine. T. ..."
Nakamura, Y. (2007). "The BioBank Japan Project." Clin Adv Hematol Oncol 5(9): 696-7.
"PURPOSE: To examine the feasibility of offering genetic susceptibility testing for lung cancer (GSTM1) via the Internet to smokers who were blood relatives of patients with lung cancer. Outcomes include proportion who logged on to the study website to consider testing, made informed decisions to log on and to be tested. METHODS: Baseline measures were assessed via telephone survey. RESULTS: Three hundred four relatives completed baseline interviews. One hundred sixteen eligible relatives expressed further interest in receiving information via the web. Fifty-eight logged on and 44 tested. Those logging on expressed greater quit motivation, awareness of cancer genetic testing, and were more likely to be daily Internet users than those who did not log on. Approximately half of the sample made informed decisions to log on and to be tested. CONCLUSION: Interest in a web-based protocol for genetic susceptibility testing was high. Internet-delivered decision support was as likely as other modalities to yield informed decisions. ..."
"This article is concerned with the ways in which people who work in and use a cancer genetics clinic in the UK talk about the 'gene for cancer'. By conceptualizing such a gene as a boundary object, and using empirical data derived from clinic consultations, observations in a genetics laboratory and interviews with patients, the author seeks to illustrate how the various parties involved adopt different discursive strategies to appropriate, describe and understand what is apparently the 'same' thing. The consequent focus on the ways in which the rhetorical and syntactical features of lay and professional talk interlink and diverge illustrates not merely how our contemporary knowledge of genes and genetics is structured, but also how different publics position themselves with respect to the biochemistry of life. ..."
"Indicated DGT is rare and decreasing DGT could result in significant savings. Institutions should consider implementing a systems-based process to limit DGT. ..."
"The six UK Genetics Knowledge Parks (GKPs) were shaped and governed by two frameworks: a 'need' to harness 'new genetics' and the relations of accountability as seen in the context of entrepreneurial government. The remit of the Cambridge GKP (CGKP) was to develop public health genetics by building on the concepts of partnership and interdisciplinarity. In the course of its work, the CGKP emphasized the virtues of 'change management', seen as distinct from, and opposed to, an academic model of knowledge production. However, the model that the CGKP actually created was a research/management hybrid that resisted quality assurance checks developed for each model (research and management), presenting a formidable challenge for the evaluation and assessment of the CGKP's work. ..."
"Strict adherence to patients' rights and to the medical professional standard must prevent negative effects of pharmacogenetics on individual rights, notably the right (not) to know, to privacy and informed consent. Use of pharmacogenetics by third parties for non-health related purposes may bring about a disproportionate intrusion of the privacy of an individual; it may result in barriers for accessing primary social goods, and it may be a disincentive for the individual to have a pharmacogenetic analysis performed for individual health care purposes or to participate in a drug trial. In a system that relies on private insurance for having access to primary social goods (health, disability--and life insurance), the use and the outcome of a pharmacogenetic analysis for the purpose of differentiation between insurance candidates on the basis of their "risk-profile" must be restricted; where appropriate measures should take into account justified interests of the insurance company to prevent adverse selection. Current measures in several European countries are not effective enough to meet the concerns specifically inherent to pahrmacogenetics. Human rights principles must be at the basis of national and European policies for providing adequate protection against disproportionate intrusion into private life, for guaranteeing equity in access to health care and accessibility of other primary social goods. ..."
"The current study uses videotapes and transcripts of 152 prenatal and cancer pretest genetic counseling sessions recorded with simulated clients to develop a conceptual framework to explore oral literacy demand and its consequences for medical interaction and related outcomes. Ninety-six prenatal and 81 cancer genetic counselors participated in the study. Key elements of the conceptual framework used to define oral literacy demand include: (1) use of unfamiliar technical terms; (2) general language complexity, reflected in the application of Microsoft Word grammar summary statistics to session transcripts; and, (3) structural characteristics of dialogue, including pacing, density, and interactivity. ..."
Schmidt, C. (2008). "Regulators weigh risks of consumer genetic tests." Nat Biotech 26(2): 145-146.
"The possibility of performing an individual's genetic profile (genetic variations and epigenetic modifications) as well as the ability of its integration in a complex network of metabolic interactions represents a huge challenge in Human Nutrition. The influence of nutrigenomics in terms of prevention and treatment of chronic diseases, such as obesity, type 2 diabetes and cardiovascular disease in a population level remains undetermined for the moment. The opportunity of nutritional intervention in critical stages of development and the chance of changing genetic susceptibility to diseases through diet in a Public Health basis should lead the future of nutrigenomics beyond the mere design of "personalized" functional food or diets. ..."
"This study aimed to assess the utility of a standardised risk information tool with respect to the uptake of screening activities administered to an accessible population of first-degree relatives of patients with sporadic colorectal cancer. This study suggests that the provision of targeted risk information to first-degree relatives is not likely to positively influence screening behaviour. Health care providers need to find alternative methods of disseminating information to this high-risk group. ..."
"We present MutaGeneSys: a system that uses genome-wide genotype data to estimate disease susceptibility. Our system integrates three data sources: the International HapMap project, whole-genome marker correlation data and the Online Mendelian Inheritance in Man (OMIM) database. ..."
"This study examined the impact of a genetics education module provided by Reach to Recovery peer volunteers. Approximately half of the women received an education module that included a genetic component, while the other half did not. Results indicated that women who received the genetics module had greater increases in genetics knowledge than the group that did not receive the module. However, follow-up interest in genetic testing was not significantly different between the two groups. Results indicate that a peer-led genetics module can increase knowledge about genetics. However, it does not appear to have a differential effect on genetic testing interest. ..."
"This article analyzes interviews conducted with parents and grandparents of children with these syndromes from across the USA to explore how they interpret a confirmed genetic diagnosis that is associated with a range of possible symptoms that may never be exhibited. Parents responses indicate that they see the genetic aspects of the syndrome as stable, permanent, and authoritative. But they allow, and even embrace, uncertainty about the condition by focusing on variation between diagnosed siblings, the individuality of their diagnosed child, his or her accomplishments, and other positive aspects that go beyond the genetic diagnosis. These multiple and often conflicting evaluations of the diagnostic label reveal the rich ways families make meaning of the authority attributed to genetic diagnosis. ..."
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