This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Center News Translating “ELSI”: International Congress on Insoo Hyun will present "Pegasus, the Chimera, and the Golden Bridle:
Ethical Challenges on the Road to
Translational Stem Cell Research" at the Bioethics The 2007 CGREAL Annual Retreat will be Friday, November 2, 2007 at Squire Valleevue Farm. Opportunities
Health Policy Research FELLOWSHIP A Perfect Match? DNA in Law Enforcement October 1, 2007 Washington DC Ethnographic Praxis in Industry Conference Keystone, CO October 11-13, 2007 Montreal Challenging Assumptions: Religious Faith, Genetic Science, Human Dignity October 12-14 Portland, OR Call for Papers: The Future of Genomic Medicine: A Satellite Symposium of the American Society of Human Genetics Annual Meeting Social Science Senior Research and Research Fellowships Due October 29 University of Exeter Call for Papers: Ethical Considerations in Community-Based Participatory Research Due November 1 The Journal of Empirical Research on Human Research Ethics is inviting papers which explore ethical issues in community-based participatory research (CBPR), including from international perspectives. Contributions may include qualitative or quantitative studies and reviews of empirical literature. Call for Papers: Living Properties: Making Knowledge And Controlling Ownership In The History Of Biology 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 Due November 15 One Origin, One Race, One Earth: Genetics, Human Rights and the Next Phase of Human Evolution RFP: Defining Wisdom Due November 19 The Arete Initiative at the University of Chicago is pleased to announce a $2 million research program on the nature and benefits of wisdom.
Netherlands Genomics Initiative: Genomics Momentum 2007 Call For Abstracts: Translating “ELSI”: International Congress on RFA: Greenwall Faculty Scholars Program in Bioethics Due December 1
Annual HRPP Conference | PRIM&R 3rd Annual Corsage Workshop: Contingencies of Genomics - Finding Roads into the Future 13 December, 2007 Utrecht, Netherlands Genomics and Society: Setting the Agendas
What's The Use of Race? Translating “ELSI”: International Congress on
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
Myriad Genetics launches BRCA testing ad campaign in Northeast (DNAPolicy)"This month Myriad began marketing BRACAnalysis directly to consumers in several Northeastern states. The campaign stirred controversy even before its launch; some health care providers believe it will lead to inappropriate testing or worse. ..." [Related: DNA forecasting for breast cancer risk raises personal, family issues (The Boston Globe) "Family, personal concerns are part of decision making ..."]
RFA: Revolutionary Genome Sequencing Technologies, The $1000 Genome
"The National Human Genome Research Institute (NHGRI) solicits R01 grant applications to develop novel technologies that will enable extremely low-cost DNA sequencing. The goal of this initiative is to reduce costs by at least four orders of magnitude, so that a mammalian-sized genome could be sequenced for approximately $1000. ..."
French Plan to Screen DNA of Visa-Seekers Draws Anger - Washington Post "The French National Assembly approved a controversial proposal authorizing the use of DNA testing to determine whether foreigners applying for visas are actually related to family members they seek to join in France. ..."[Related: Universal DNA database would make us all suspects - New Scientist "Imagine being a potential suspect for every crime committed in your country. That would be the logic if DNA from all of a country's citizens were stored in police DNA records. ..."]
Long-awaited international ethical guidelines for biobank researchers "Swedish ethics researchers at the Center for Bioethics (CBE), together with leading biobank researchers, put forward a pioneering solution: a set of practical ethical guidelines for biobank research. ..." [Related: Concern over DNA database access (BBC) "Strict controls are needed to ensure genetic information collected for research is not used inappropriately by outside parties, experts have warned. ..."]
As personal genomics stands poised to go mainstream, researchers urge caution "Ethical and clinical implications must be carefully considered, Canadian expert says ..." [Related: Gene information opens new frontier in privacy debate (The Boston Globe) "Scientific celebrities are making their genetic information public knowledge. Will you be able to keep yours private? ..." Personal Genomes: Mainstream In Five Years, But Who Should Have Access? (ScienceDaily) "Imagine this: you visit your clinician, undergo genetic testing, and then you are handed a miniature hard drive containing your personal genome sequence, which is subsequently uploaded onto publicly accessible databases. This may sound like science fiction, but it is scientific fact, and it is already happening. ..."]
Genographic Project plots traces ancestry, migration with DNA mapping (The Boston Globe) "Affleck is one of about 20 local luminaries who have volunteered to have their cheeks swabbed for DNA as part of an international effort to better understand ancient human migration. ..." [Related: Computer program traces ancestry using anonymous DNA samples "Reserachers have developed a computer algorithm that can help trace the genetic ancestry of thousands of individuals in minutes, without any prior knowledge of their background. ..." TheDay.com - DNA Helps Get To The Roots Of The Problem "Science adds dimension to researching ancestry ..." Researchers seek Lost Colony descendants "Researchers hope genetic testing will connect the dots of a 420-year-old mystery that has lingered since England's first attempt to colonize North America. ..." Coming Soon: The Mother of All Genealogy Databases "Is combining all genealogy data too scary? It's all relative ..."]
Is there really a 'mommy' gene in women? "Basic principles of biology rather than women s newfound economic independence can explain why fewer of them are getting married and having children, and why the trend may only be temporary ..." [Related: Researchers identify hundreds of genes controlling female fertility "Their research may open the door to much wider study in the poorly understood field of infertility. ..." Of genes and motherhood: Even when our children resemble us, the outcome can be very different (Boston Globe) "So our changeling children can help remind us that our own lives and health will remain - for the most part - beyond our powers to predict.. ..."]
New discovery leaves blood-doping athletes scratching their heads "A stunning discovery may make blood doping and the treatment of severe anemia as easy as washing your hair. ..."
New genetic research into nicotine addiction shows promise for personalized treatment "Whether a smoking-cessation drug will enable you to quit smoking may depend on your genes. The study found that the enzyme known to metabolize both the smoking cessation drug bupropion and nicotine is highly genetically variable in all ethnicities and influences smoking cessation. . ..."
Researchers using NSF grant to study how scientists can communicate ethically with lay audiences "Scientists have to adhere to certain ethical standards in their research, but what happens when they talk about that research with the public? ..."
Smithsonian scientists help lead effort to 'barcode' world's species
"Smithsonian researchers are among the leaders in a worldwide effort to revolutionize the way scientists identify species in the laboratory and in the field with a technique called DNA barcoding. ..."
Center for Genetics and Society : Medical Exploitation "IOM released a controversial report recommending the return of federally funded medical research to our nation's prisons. Propelled by historical amnesia and corporate greed, a resurgence of such research may do much harm. ..."
Researchers question some genetic screening (Reuters) "Telling couples their fetuses have a treatable genetic disorder leads many of them to terminate the pregnancy, researchers said on Tuesday, raising issues about genetic screening programs. ..." [Related: IVF couple screened to avoid Alzheimer's risk (Telegraph) "The HFEA has granted a licence to a fertility clinic to carry out IVF treatment with the sole aim of ensuring that the dementia, which can take hold from the age of 35, is not passed on. ..."]
Will Sharing Ideas Advance Cancer Research? (Wall Street Journal) "Modeled on the Value Investors Club, the annual prize will go to the person who posts the best new cancer-research idea, judged by a board of respected scientists, at the prize's Web site by the end of December. ..."
DNA unraveled (The Boston Globe) "A 'scientific revolution' is taking place, as researchers explore the genomic jungle ..."
Where Risk and Choice and Hope Converge, a Guiding Voice (New York Times)"But her job is made even more grueling because the women referred to her are overwhelmingly minority, poor and poorly educated. ..."
Do We Really Know What Makes Us Healthy? (New York Times) "The dangerous game being played here is in the presumption of preventive medicine. ..." [Related: Most Science Studies Appear to Be Tainted By Sloppy Analysis (WSJ) "By his calculations, most published research findings are wrong. ..."]
All in the genes? (San Francisco Chronicle) "Heredity versus environment, nature versus nurture: the argument over what best explains intelligence has been going strong for more than a century. What's at stake isn't simply the definition of good science but the meaning of the just society. ..." [Related: 'Genes and environment' grant funds close look at nature-nurture overlap in common diseases "Two facilities won new $11.7 million federal grants to rigorously sort out how such environmental factors as diet, exercise, stress and addictions interact with people s individual genetic makeup to affect their risk for disorders as wide-ranging as cancer, diabetes, tooth decay and heart disease. ..."]
Is Do Unto Others Written Into Our Genes? (New York Times)"Where do moral rules come from? Seldom considered is a source now being advocated by some biologists, that of evolution. ..."
Poignant Maltz Museum exhibit on Nazi medical experiments points to modern attempts at genetic engineering "In a world where advances in genetic engineering again provide the temptation to create a new "master race," the traveling exhibit (now in Cleveland) from the U.S. Holocaust Memorial Museum in Washington, D.C., also has contemporary relevance. ..."
DNA Technology May Curb Bogus Disability Claims (workforce) "Two related medical technologies promise to end fraudulent disability and workers compensation claims. All that s needed from employees is a little DNA. ..." [Related: Equality Bill seeks to ban genetic discrimination (Telegraph) "A landmark measure to outlaw unfair genetic discrimination should be included in a new Equality Bill ..."]
Gene therapy might not have caused patient's death (Nature) "Case was complicated by immunosuppressant drug regime. ..." [Related: More Public Accountability Needed in Gene Therapy Death, Says Public Interest Group "Center Calls for Moratorium on Enrolling Some Patients ..."Questions Remain on Cause of Death in Arthritis Trial (Science) "An investigation reached no firm conclusion on whether the experiment was to blame ..."Picking nits or learning lessons? Defensiveness on Display in Gene Therapy Death (Bioethics Forum) "There s a lot we don t yet know. But there s a fair amount we do know, and much of it is troubling. ..."]
Is the NIH budget saturated? (The Scientist) "Why hasn't more funding meant more publications? ..."
The Geneticist's Best Friend (Science) "Dogs are helping to hunt down more than foxes and lions: Researchers are increasingly relying on them to track down genes and pathways involved in canine and human diseases ..." [Related: Europe Going to the Dogs (Science)"The LUPA consortium plans to get DNA samples and health histories from 8000 dogs and hunt down genes for 18 diseases. ..."
The Really Hard Science (Scientific American)"To be of true service to humanity, science must be an exquisite blend of data, theory and narrative ..."
Gene Logic Helping FDA In Standardizing Genomic Data"Gene Logic Inc. has agreed to share its quality-control methods and metrics with the FDA to help the agency better understand disparate genomic data submitted as part of approval applications. ..."
The importance of gene regulation for common human disease "A new study show that common, complex diseases are more likely to be due to genetic variation in regions that control activity of genes, rather than in the regions that specify the protein code. ..." [Related: New book presents successful strategies for probing genetic variation "The first manual specifically geared towards genetic variation studies has just been released ..."]
HHS Issues First Department-Wide Report on Personalized Health Care "Work in biomedical science, health information technology and health care delivery should be aligned to produce the right treatment, at the right time for each individual patient. ..."
Study reveals possible genetic risk for fetal alcohol disorders "New researchsuggests that infants and children who carry a certain gene variant may be more vulnerable to the ill effects of fetal alcohol exposure. ..."
Ageing: From stem to stern (Nature) "Immortality is the stuff of myth and legend, but lifespan extension is the subject of serious scientific inquiry. Exploring the causes and effects of ageing in stem cells should aid this quest. ..." [Related: Researchers find connection between caloric restriction and longevity "Scientists have discovered two genes in mammalian cells that act as gatekeepers for cellular longevity.. ..." U.S. study finds potential new ways to fight aging (Reuters) "Researchers said they had found more ways to activate the body's own anti-aging defenses -- perhaps with a pill that could fight multiple diseases at once. ..."Searching Out Longevity (Legion Magazine) "Researchers are engaged in a race against time, trying to untangle the biology of aging, and to identify how "nature" and "nurture" intersect. ..."Key to longer life (in flies) lies in just 14 brain cells "The p53 protein may work its lifespan-extending magic in only 14 insulin-producing cells in the fly brain. ..."NIH awards Einstein multimillion dollar grant to extend studies of exceptional longevity ... NIA Intervention Testing Program Solicits Proposals for Compounds to Test for Anti-Aging Activity in Mice "The NIA ITP is soliciting proposals for compounds to enter the study in 2008. ..."]
Long-distance Living (AARP Magazine) "His opponents in aging research think he s a lunatic. But scientist Aubrey de Grey believes humans could live to 1,000 forever youthful and disease free ..." [Related: Battling Time's Ravages (Wall Street Journal) "A review of de Grey's "Ending Aging" ..."]
Genetics in the Literature
CESAGen Flagship Projects 2002 - 2007 Summaries and Key Findings
The ESRC Centre for Economics and Social Aspects of Genomics was established in 2002 as a collaboration between the University of Lancaster and Cardiff. Nine flagship projects were funded in the first term (2002—2007), in addition to a number of small initiatives. This booklet provides summaries of all nine flagship projects and outlines the key findings from the research carried out so far. ..."
Alcabes, P. (2006). "The risky gene: epidemiology and the evolution of race." Patterns of Prejudice 40(4-5): 413-425.
"Alcabes examines how modern epidemiology views race, including a historical review and a critique of methods. Race occupies a central place in health discourse partly because of two misapprehensions. First, contemporary epidemiologic research focuses on individual behaviour as a determinant of disease risk, despite the fact that risk as predicted from epidemiologic data is solely interpretable for large populations, not for individuals. Historically and today, connections between behaviour and disease have been used to fortify racial discrimination, with reprobate behaviours imputed to unwanted races. Second, the advent of evolutionary theory and the recognition that genetics provides a mechanism by which evolution proceeds together have allowed for the social concept of 'race' to be imbued fallaciously with biological determinants. With an epidemiology based on behaviour, a behavioural indexing of race and a racial interpretation of evolutionary theory and genomics, the circle closes: society can ascribe differences in disease occurrence to the genetic make-up of the sufferers or to their behaviour, or both-that is, to race-and avoid having to address social problems that typically underlie disease risk. ..."
Appleby, B. (2006). "Is human nature obsolete? Genetics, bioengineering, and the future of the human condition." Studies in Religion-Sciences Religieuses 35(3-4): 577-579.
Azoulay, K. G. (2006). "Reflections on race and the biologization of difference." Patterns of Prejudice 40(4-5): 353-379.
"In this article Gibel Azoulay critiques the tenacity of the correlation between 'race' as a socio-political notion and 'race' as a biological entity in academic circles in general and medical research in particular. Legacies of nineteenth-century scientific racism percolate into the public sphere, facilitating a uniquely US American cultural consensus that imagines and markets external physiological features as gross criteria for making distinctions, highlighting the medicalization of race in pharmaceutical, medical and genetic research. ..."
"These results are noteworthy because they suggest that the effects of mutations are dynamic rather than fixed. ..."
"While many national organizations may already have appropriate policies addressing various ethics issues, there is a need for an international framework to assist those nations that have not yet developed such policies, as well as to enable alignment of existing national policies. We have proposed a generic ethics framework, incorporating a hierarchy of four fundamental guiding principles: autonomy, justice, non-maleficence and beneficence. Proposals or issues requiring policy development can be considered and tested against this hierarchy, resulting in the development of policy and positions consistent with the above framework, acceptable to all participating stakeholders. . ..."
"This paper situates age discrimination within a broader system of age relations that intersects with other inequalities, and then uses that framework to analyze internet advertisements for the anti-aging industry. Such ads reinforce age and gender relations by positing old people as worthwhile only to the extent that they look and act like those who are middle aged or younger, by defining manhood and womanhood in opposition to each other, and by defining old age as an unhealthy loss of gender identity. These ads promote a reversion to middle age and white, middle-class, heterosexual norms of male performance and female beauty. ..."
"Following a contemporary analysis of malnutrition, the claim that GM technology has the potential to provide the hungry with sufficient nourishment will be discussed within the domain of moral philosophy to determine whether there exists a moral obligation to pursue this end if and only if the technology proves to be relatively safe and effective. By using Peter Singer's duty of moral rescue, I argue that we have a moral duty to assist the third world through the distribution of such GM plants. . ..."
"Many geneticists are disgruntled with the coverage of genetics in the mass media, yet geneticists themselves have a part to play in improving that coverage. This article aims to help geneticists to do so by explaining the forces that shape science news. It provides some specific options for reducing hype, countering genetic determinism and preventing the use of genetics to reinforce discriminatory messages, slants that many reporters are inclined to give to their articles. ..."
"This article discusses the approach to ethics review currently being adopted at a large Canadian university in transition from a teaching to a research institution. It articulates the values that guide the REB in its deliberations and explores how these values support a facilitativerather than an auditapproach to ethics review. Two case studies of innovative qualitative inquiry are discussed. ..."
"Here, we will use DNA barcoding of fish as an example to illustrate foreseen applications, and as a basis to stimulate reflection on potential societal impacts of this horizontal genomics project. ..."
Egorova, Y. (2007). "The meanings of genetics: Science and the concepts of personhood." Health Care Analysis 15(1): 1-3.
"There are two schools of thought on how tort liability may affect personalized medicine, i.e., whether fear of lawsuits will tend to accelerate progress or slow it down. Tort suits include product liability suits against manufacturers and negligence suits against physicians and other providers of health-related services. ..."
"Inspired by diffusion research, this paper identifies factors affecting the adoption pattern of pharmacogenetics in the public using an Internet-based questionnaire survey. Knowledge of pharmacogenetics, and thus the diffusion of the technology, is influenced by medicine consumption, experienced lack of effect and side effects, use of medical testing and perception of societal need..."
"We propose a framework for the ethical analysis of stem cell research and development that considers the welfare of communities, tissue recipients, and cell sources in relation to a range of stem cell production and distribution options. Ethical desiderata include: equitable access, maximized potential therapeutic benefit across demographic and disease groups, and reasonable cost. We array plausible sources of stem cells and distribution strategies to characterize 12 potential models for producing and distributing cells and tissues in the future. . . ..."
Gilman, S. L. (2006). "Alcohol and the Jews (again), race and medicine (again): on race and medicine in historical perspective." Patterns of Prejudice 40(4-5): 335-352.
"The question of why or whether Jews have a resistance to alcoholism is now the subject of genetic research. Parallel to investigations into such perceived resistance in other groups (such as 'Asians'), the recent work makes global claims that can be shown to have very specific social and historical origins. The accusation that the Jews abused alcohol was rebutted in the eighteenth century as Jews entered into the German-speaking public sphere. The key to such access was adherence to rules of 'decorum', and the public consumption of alcohol was central to this project. ..."
Goodman, A. H. (2007). "Toward genetics in an era of anthropology." American Ethnologist 34(2): 227-229.
Graves, J. L. and M. R. Rose (2006). "Against racial medicine." Patterns of Prejudice 40(4-5): 481-493.
"Graves and Rose construct a case against racial medicine. Biological races in other species are strongly differentiated genetically. Because human populations do not have such strong genetic differentiation, they are not biological races. Nonetheless, the lack of population genetic knowledge among biomedical researchers has led to spuriously racialized human studies. In order to resolve these issues, medicine should take both social environment and population genetics into account, instead of dubious 'races' that inappropriately conflate the two. ..."
"The workgroup participants met to discuss how to improve the use of family history information in pediatric settings. Topics addressed at the meeting included current practices, needs, and barriers for use of family history information in pediatric primary care and public healthSpecific model conditions were presented that illustrated issues involved in the use of family history information in pediatric settings. Ethical, economic, and technologic concerns involved in integration of family history information into pediatric settings were discussed also. ..."
Guilam, M. C. and M. C. Correa (2007). "Risk, medicine and women: a case study on prenatal genetic counselling in Brazil." Dev World Bioeth 7(2): 78-85.
"This paper focuses on medical and legal consequences of the detection of severe foetal anomalies, mainly anencephaly and Down syndrome, and in light of the fact that abortion is illegal in Brazil. ..."
Hefner, P. (2007). "Genetic frontiers: Challenges for humanity and our religious traditions." Zygon 42(1): 183-191.
"This article surveys the challenges and the resources that the monotheistic religions can bring to bear in response. It is important for those religious communities to communicate to the larger society both their common beliefs and values and the diversity among them. ..."
Huggins, P., L. Pachter, et al. "Toward the Human Genotope." Bulletin of Mathematical Biology.
"Here we use data from the HapMap Project, restricted to two ENCODE regions, to study a subpolytope of the human genotope. We study three different approaches for obtaining informative low-dimensional projections of this subpolytope. The projections are specified by projection onto few tag SNPs, principal component analysis, and archetypal analysis. We describe the application of our geometric approach to identifying structure in populations based on single nucleotide polymorphisms. ..."
Ibanez-Orcajo, M. T. and M. M. Martinez-Aznar (2007). "Solving problems in genetics, part III: Change in the view of the nature of science." International Journal of Science Education 29(6): 747-769.
"We present some results of an investigation with fourth-level Spanish secondary education students (15 year olds) who were taught genetics through a unit based on an open problem-solving methodology as an investigation. The conceptual change about the nature of science experienced by the students in the experimental group was not observed in the control group, which worked in a traditional manner. . ..."
Ilkilic, I., M. Wolf, et al. (2007). "The brave new world of prevention? On the prerequisites and scope of public health genetics." Gesundheitswesen 69(2): 53-62.
"This study analyses the scientific venture points and the larger framework of the implementation of strategies of public health genetics. The applicability of predictive and preventive measures of public health genetics are scrutinised with regard to their effect on both public and individual health. A major focus is on the economical, social and ethical challenges arising from any implementation of public health genetics. The guiding principle of our analysis is the (improvement of) social achievability of health as a measure for successful innovation of health care and prevention. ..."
Kerr, A., S. Cunningham-Burley, et al. (2007). "Shifting subject positions - Experts and lay people in public dialogue." Social Studies of Science 37(3): 385-411.
"In this paper, we explore the dynamics of expertise and their implications for the lay-expert divide at a series of public events about the new genetics. We examine participants' claims to expertise and consider how this relates to their claims to credibility and legitimacy and the way in which these events unfolded. Using a combination of ethnographic and discursive analysis, we found that participants supplemented technical expertise with other expert and lay perspectives. This leads us to conclude that public engagement activities will not challenge the dominance of technical expertise in decision-making about science, technology and medicine without more explicit and reflexive problematization of the dynamics of expertise therein. ..."
Kieran, S., L. J. Loescher, et al. (2007). "The role of financial factors in acceptance of clinical BRCA genetic testing." Genetic Testing 11(1): 101-110.
" We explored financial factors implicated in non-uptake of BRCA testing in women who had received genetic counseling in a clinical setting. Specifically, we described financial factors (affordability, health insurance, other) involved with BRCA testing; compared nonfinancial factors (disease, sociodemo-graphic, risk assessment) in women who did not have BRCA testing (nontesters) with women who had the test (testers); showed associations of financial and nonfinancial factors with BRCA testing; and identified predictors of non-uptake of BRCA testing.. ..."
"This review focuses on genetic factors that determine the variable response to vaccination. ..."
Kjosavik, F. (2007). "From symbolism to information? Decoding the gene code." Biology & Philosophy 22(3): 333-349.
"'It is examined if coded information distinguishes genes from other information carriers, i.e., whether there are genetic words or sentences by virtue of the genetic code, and, if so, whether they have any semantic content. It is concluded that there is no genetic language with semantic content, but that the genetic code still enables unique language-like modes of transmission and interpretation of causal information. ..."
Lee, S. S. J. (2006). "Biobanks of a 'racial kind': mining for difference in the new genetics." Patterns of Prejudice 40(4-5): 443-460.
"Lee argues that DNA repositories maintain both physical and symbolic space for notions of genetic essence among human groups whereby 'race' is framed as a natural kind. She argues that, despite rhetorical strategies to de-race the new genomics, the ongoing significance of racial differences in the naming of groups reveals the socio-cultural context in which genomic science is produced and translated into clinical medical practice. In addressing the seeming paradox between the mantra of sameness, which emphasizes that humans share 99.9 per cent of their genetic material, and the current infrastructure of biobanks being built in support of research on difference, Lee examines three DNA banks and discusses the emergence of the trope of 'genetic particularity'. She argues that this trope is possible through a reframing of the human genome as not one collective, common blueprint, but rather as derivations of a theme whereby diversity is translated into 'racial identity' relinked to biological difference. ..."
Leeming, W. (2007). "On the relevance of the "Genetics-based" approach to medicine for sociological perspectives on medical specialization." Canadian Review of Sociology and Anthropology-Revue Canadienne De Sociologie Et D Anthropologie 44(2): 151-173.
"This paper draws on a study on the development of medical genetics as a medical specialism in the U.K. and Canada to reflect on how local and national contexts affect specialty formation. The paper explores the specific circumstances under which geneticists set about turning their work into a medical specialism based on a "genetics-based approach" to illness and how "medical genetics" as a specialism has been assessed and configured to fit national and regional health service requirements. ..."
"The rapid developments in modern genetics are changing the way disease and wellness may be considered. New concepts are emerging such as predictive genetic testing and forecasting future disease, as well as internet genetic analysis available to the public. In this short communication we consider some of the implications relating to predictive genetic testing in the public domain. ..."
Lopez, J. J. and A. Robertson (2007). "Ethics or politics? The emergence of ELSI discourse in Canada." Canadian Review of Sociology and Anthropology-Revue Canadienne De Sociologie Et D Anthropologie 44(2): 201-218.
"This paper develops the Foucauldian conceptual framework of discursive formation to discuss the emergence of the Canadian ELSI (Ethical, Legal and Social Implications of genetics and genomics) agenda. It explores the wider discursive ecology which has made possible the positioning of ELSI expertise as a legitimate modality for the governance of biotechnology. The paper critically evaluates the extent to which ELSI provides opportunities for Canadian society to participate in the governance of scientific knowledges by analyzing how "Canadians" are "included" in the activities of the Canadian Biotechnology Advisory Committee (CBAC). It concludes by highlighting some of the problems associated with the eclipse of politics by ethics. ..."
Mailman, M. D., M. Feolo, et al. (2007). "The NCBI dbGaP database of genotypes and phenotypes." Nat Genet 39(10): 1181-1186.
Maini, S. (2007). "Anti-aging treatments: continuous innovation, an opportunity for all." Agro Food Industry Hi-Tech 18(1): 2-2.
Mateos, P. (2007). "A review of name-based ethnicity classification methods and their potential in population studies." Population Space and Place 13(4): 243-263.
"Several approaches have been proposed to classify populations into ethnic groups using people's names, as an alternative to ethnicity self-identification information when this is not available. These methodologies have been developed, primarily in the public health and population genetics literature in different countries, in isolation from and with little participation from demographers or social scientists. The objective of this paper is to bring together these isolated efforts and provide a coherent comparison, a common methodology and terminology in order to foster new research and applications in this promising and multidisciplinary field. ..."
"Routine generation of whole-genome sequences will pose many health system challenges. ..."
Mevorach, K. G. (2007). "Race, racism, and academic complicity." American Ethnologist 34(2): 238-241.
"To compare attitudes of prenatal service consumers and providers regarding extent of prenatal testing and to evaluate these attitudes in relation to sociodemographic and professional characteristics, women were interviewed by phone 5-8 weeks postpartum (n = 596) using a structured questionnaire. Health professionals (n = 351) completed a parallel questionnaire. Health professionals were significantly more supportive of comprehensive prenatal testing than women (61.1 vs. 34.1%, respectively). ..."
Montoya, M. J. (2007). "Bioethnic conscription: Genes, Race, and Mexicana/o ethnicity in diabetes research." Cultural Anthropology 22(1): 94-128.
"This article is an examination of academic, corporate, and state-funded alliance of molecular, biological, computer, and clinical scientists who are conducting research into the genetic epidemiology of type 2 diabetes. Because type 2 diabetes affects human groups differently, researchers use ethnic and racial taxonomies to parse populations and social history to rationalize their categorical choices. In a process termed "bioethnic conscription," the social identities and life conditions of DNA donors are grafted into the biological explanations of human difference and disease causality in both objectionable and constructive ways. Bioethnic conscription is presented as an ethnographically sound alternative to the either-or Proposition of the (R)ace-no race debate within biomedicine and anthropology. ..."
"This article analyses the discursive practices of scientists engaged in controversial science in their narrated accounts of encounters with activists. It explores what happens when scientific credibility and authority are challenged in a public debate on the benefits and risks of such science. The aim is to understand how scientists discursively negotiate and make sense of their encounters with activists, the range of subject positions they claim, and how power is implicated in identification with the public. The article shows how scientists counter emotional appeals, utilizing both scientific and public identities respectively to legitimate the epistemic and moral authority of science and to marginalize opposing activists. It is argued that a unitary view of scientific identity is inadequate. Rather, in times of public challenge and controversy, scientists may utilize a multiplicity of subject positions to achieve identification with public interests. The discursive construct, public interest, is interpreted as a contested discursive space and a discursive resource for influencing public opinion. ..."
Muller-Wille, S. (2006). "The obsession of race: Anthropology and genetics in the 20th century." Nuncius-Journal of the History of Science 21(1): 194-195.
Overboe, J. (2007). "Disability and genetics: Affirming the bare life (the state of exception)." Canadian Review of Sociology and Anthropology-Revue Canadienne De Sociologie Et D Anthropologie 44(2): 219-235.
"This essay, argues that "expressions of life" of disabled people are both marginalized and nullified through geneticism. Underscoring the application of genetics is the continuum from liberal individualism to nostalgic populism. Drawing from the work of Judith Butler, the paper outlines an ableist matrix. Giorgio Agamben's observations about bio-politics - a distinction between the "bare life" and the "political life," with disabled people primarily associated with the former - denotes a restrictive humanism. How disabled people negotiate the privileging of political life over the bare life is illuminated through the concept of "normative shadows." ..."
Packer, A. (2007). "Human genetics: Mapping with expression." Nat Rev Genet 8(10): 734-734.
Parker, M. "Ethnography/ethics." Social Science & Medicine In Press, Corrected Proof.
"This paper situates discussion of the ethics of ethnographic research against the background of a theoretical and methodological debate about the relationship between ethics and method, and about the relationships between research methods and their objects. In particular, the paper investigates the implications of folding together the ethical and the empirical in research and argues that this requires the development of new ethico-ethnographic methods for the investigation of ethico-moral objects. The paper's third section explores the implications of these arguments for research practice, using The Genethics Club as an example. ..."
..."
Perrin, A. J. and H. Lee (2007). "The undertheorized environment: Sociological theory and the ontology of behavioral genetics." Sociological Perspectives 50(2): 303-322.
"The authors consider the concept of "environment" in behavioral genetics and argue that sociology is in a unique position to evaluate and specify a theoretically robust concept of environment. Building on insights from classical and contemporary social theory, the authors argue that the study of genetic influence on behavior needs to incorporate sociological understandings of contextual effects. . ..."
Ratto, M. and A. Beaulieu (2007). "Banking on the human genome project." Canadian Review of Sociology and Anthropology-Revue Canadienne De Sociologie Et D Anthropologie 44(2): 175-200.
"The records contained in these new biobanks aim to link clinical, life course and environmental, and genetic information at the level of populations and are therefore important infrastructures linking genes and society. In our study of two such biobanks, we have focussed on the metaphors used to discuss these initiatives in various discourses. We explore how biobanks become sites for working out the issues associated with biomedia. ..."
Reddy, D. S. (2007). "Good gifts for the common good: Blood and bioethics in the market of genetic research." Cultural Anthropology 22(3): 429-472.
"This article is based on ethnographic fieldwork conducted with the Indian community in Houston, as part of a NIH-AWGRI-sponsored ethics study and sample collection initiative entitled "Indian and Hindu Perspectives on Genetic Variation Research. I consider the meanings that come to be associated with blood donation as it passes through various hands, agendas, and associated ethical filters on its way to the lab bench: how and why blood is solicited, how the giving and taking of blood is rationalized, how blood as material substance is alienated, processed, documented, and made available for the promised ends of basic science research. Examining corporeal substances and asking what sorts of gifts and problems these represent, I argue, sheds some light on two imbricated tensions expressed by a community of Indians, on the one hand, and of geneticists and basic science researchers, on the other hand: that gifts ought to be free (but are not), and that science ought to be pure (but is not). In this article, I explore how experiences of bioethics are variously shaped by the histories and habits Of Indic giving, prior sample collection controversies, commitments to "good science" and the common "good of humanity," and negotiations of the sites where research findings circulate. ..."
Reuter, S. Z. (2007). "The politics of 'wrongful life' itself: discursive (mal) practices and Tay-Sachs disease." Economy and Society 36(2): 236-262.
"This article examines eight wrongful life/wrongful birth suits filed by parents of children born with Tay-Sachs disease. Their legal claims are analysed in terms of the biopolitics of genetic risk that has emerged in recent decades with a view to arguing that, as health and disease are increasingly understood within a genetics framework, the individual is becoming responsibilized to be proactive and undergo genetic testing. At the same time, this responsibilization is being defined as a kind of entitlement rooted in historically specific ideas about personhood and quality of life. The only option for reconciling this contradiction has been simply to define responsibilization as the individual's right, thereby calling into question the notion of agency in genetic decision-making and revealing that choice in this context is in fact becoming the unfreedom to choose. ..."
"We assessed the positive and negative effects of informing obese people about the genetic etiology of being overweight. Two hundred ninety-four obese people were randomized to 2 interventions (a 1-session consultation for obese people on how to manage obesity either including genetic information or not). Both types of consultations were considered helpful by the participants, and had comparable effects on body weight. The consultation with genetic information was rated superior in terms of leading to new insights (advantage for consultation with genetic information. Consultations in obesity should include genetic information . ..."
" Four studies examined young healthy individuals' willingness to take drugs intended to enhance various social, emotional, and cognitive abilities. We found that people were much more reluctant to enhance traits believed to be highly fundamental to the self (e.g., social comfort) than traits considered less fundamental (e.g., concentration ability). Moral acceptability of a trait enhancement strongly predicted people's desire to legalize those enhancements, but not their willingness to take those enhancements. Ad taglines that framed enhancements as enabling rather than enhancing the fundamental self increased people's interest in a fundamental enhancement, and eliminated the preference for non-fundamental over fundamental enhancements. ..."
Roiser, J. P. (2007). "Wrestling with behavioral genetics: Science, ethics, and public conversation." American Journal of Bioethics 7(1): 77-78.
"There is reason to believe that the complexity of many "multifactorial" disorders is primarily due to genetic heterogeneity, with defects of different genes causing the same disease. Moreover, de novo copy-number variation has been identified as a major cause of mental retardation and other complex disorders, suggesting that new mutations are an important, previously overlooked factor in the etiology of complex diseases. These observations support the notion that research into the previously neglected monogenic disorders should become a priority of genome research. ..."
Schmidt, E. B. (2007). "The parental obligation to expand a child's range of open futures when making genetic trait selections for their child." Bioethics 21(4): 191-197.
"I contend that not only would parents act unethically if they make selections that constrain the range of their child's futures, they would act unethically if they make selections that shift the range of their child's futures, because selections that shift the range of the child's futures would allow parents to over-determine their child's futures. Thus, I contend that parents would act ethically only if they make selections that expand their child's range of futures. ..."
Schneider, S. M. (2007). "The dependent gene: The fallacy of "nature vs. nurture"." Behavior Analyst 30(1): 91-105.
"Nature-nurture views that smack of genetic determinism remain prevalent. Yet, the increasing knowledge base shows ever more clearly that environmental factors and genes form a fully interactional system at all levels. Moore's book covers the major topics of discovery and dispute, including behavior genetics and the twin studies, developmental psychobiology, and developmental systems theory. Knowledge of this larger life-sciences context for behavior principles will become increasingly important as the full complexity of gene-environment relations is revealed. Behavior analysis both contributes to and gains from the larger battle for the recognition of how nature and nurture really work. ..."
"The current qualitative study used in-depth, open-ended telephone interviews to gain insight into the public's beliefs about the possible genetic origins of homosexuality. We found that although limited understanding and biased perspectives likely led to simplistic reasoning concerning the origins and genetic basis of homosexuality, many individuals appreciated the complex and interactive etiological perspectives. These interactive perspectives often included recognition of some type of inherent aspect, such as a genetic factor(s), that served as an underlying predisposition that would be manifested after being influenced by other factors such as choice or environmental exposures. We also found that beliefs in a genetic basis for homosexuality could be used to support very diverse opinions including those in accordance with negative eugenic agendas. ..."
Stein, R. A. (2007). "Genetics and life insurance, medical underwriting and social policy." American Journal of Bioethics 7(4): 88-89.
Sustar, P. (2007). "Crick's notion of genetic information and the 'central dogma' of molecular biology." British Journal for the Philosophy of Science 58(1): 13-24.
"The primary aim of the paper is to consider a solution to the major difficulty of the causal interpretation of genetic information: how to distinguish the privileged causal role assigned to nucleic acids, DNA in particular, in the processes of replication and protein production. A close reading is proposed of Francis H. C. Crick's On Protein Synthesis (1958) and related works, to which we owe the first explicit definition of information within the scientific practice of molecular biology. ..."
"The question of whether pathogenesis of the "early" and "late" onset cases is similar enough to qualify as a single disease was previously raised although not conclusively settled. Interestingly, debate on this issue has not kept pace with advancing knowledge about the molecular, biochemical and clinical underpinnings of tangle-and-plaque dementias. Since the question of whether both forms of AD share a common pathogenesis could profoundly impact diagnostic and treatment development efforts, it seems worthwhile to revisit this debate. ..."
"At this early stage of research and development on array comparative genome hybridization, the ethical implications of the conduct of research, as well as how research findings are presented and interpreted, should also be considered by the research, clinical, and ethics communities. These considerations are especially important in the use of array comparative genome hybridization to study complex and common traits. We examined recent publications on autism as an example of the application of array comparative genome hybridization to a complex phenotype. Our goal was to identify points to consider for researchers, clinicians, and patients/families to ensure responsible and ethical design, presentation, and interpretation of these kinds of studies. ..."
Valiverronen, E. (2006). "Expert, healer, reassurer, hero and prophet: framing genetics and medical scientists in television news." New Genetics and Society 25(3): 233-247.
"This paper is concerned with representations of the human genome and medical applications of modern biotechnology in Finnish television news. The main focus is on the way that news stories are framed by various linguistic and visual means and on how scientists appearing in the news are positioned. The qualitative analysis shows that in the national frame, biotechnology was treated as a field with great future promise, weighing the prospects of Finnish scientists to succeed in international competition. In the disease frame, the focus was on the achievements of genetic research in the treatment of serious diseases. In the breakthrough frame, it was predicted that genetics will revolutionise the treatment of diseases in 'the near future'. Finally, news stories presented in the threat frame were mainly concerned to predict and avert problems arising from the potential abuse of genetic research. The analysis suggests that these frames implied certain speaking positions to the scientists appearing in the news stories. ..."
Van Riper, M. (2007). "Individuals, families, and the new era of genetics: Biopsychosocial perspectives." Journal of Family Nursing 13(3): 388-390.
"In light of the vast amounts of genomic data that are now being generated, we propose a new measure, the Bayesian false-discovery probability (BFDP), for assessing the noteworthiness of an observed association. BFDP shares the ease of calculation of the recently proposed false-positive report probability (FPRP) but uses more information, has a noteworthy threshold defined naturally in terms of the costs of false discovery and nondiscovery, and has a sound methodological foundation. . ..."
"This article explicates some of the shortcomings of IE, so future institutional ethnographers can work with these. I offer a critical assessment of IE, focusing on its ontology of the social and the issue of truncation, the constitutive hermeneutics of interviewing, and the production of possible subjects in data analysis. The promise of IE is its critique of traditional sociology and introduction of ethnographic practice inquiring beyond nominalism into extra-local social relations that, through texts, govern local action. But IE establishes itself in a binary of emancipation versus regulation, so it is less concerned with its necessary complicity in objectification. IE must continue to be a sociology of possibilities, open to its own contradictions and continual reflexive intervention into itself. ..."
Wald, P. (2006). "Blood and stories: how genomics is rewriting race, medicine and human history." Patterns of Prejudice 40(4-5): 303-333.
"SWald turns to the Human Genome Diversity Project, the new Genographics Project and the 2003 film Journey of Man to consider how racism typically inheres not in the intentions of researchers, but in the language, images and stories through which scientists, journalists and the public inevitably interpret information. Wald demonstrates the importance of understanding those stories as inseparable from scientific and medical research. Her central argument is that if we understand the power of the stories we can better understand the debates surrounding race and genomic medicine, which, in turn, can help us make better ethical and policy decisions and be useful in the practices of science and medicine. ..."
"The article discusses the analysis of the ethical practice in conducting research which is to acquire informed consent from the people who are involved in the process, especially in groups with vulnerable members. The informed consent is associated with problems when it includes members of groups such as children and people with learning disabilities. The acquisition of permission is linked into two difficulties such as the absence of consensus among the researchers concerning the informed consent, and the absence of an agreement about the sets of principles and procedures that are applicable in different groups. The result has showed that many researchers are in favor of the guidelines that help them to attain balances in the pressure conflicts which occurs in research. ..."
Zeiler, K. (2007). "Who am I? When do "I" become another? An analytic exploration of identities, sameness and difference, genes and genomes." Health Care Analysis 15(1): 25-32.
"What is the impact of genetics and genomics on issues of identity and what do we mean when we speak of identity? This paper explores how certain concepts of identity used in philosophy can be brought together in a multi-layered concept of identity. It discusses the concepts of numerical, qualitative, personal and genetic identity-over-time as well as rival concepts of genomic identity-over-time. These are all understood as layers in the multi-layered concept of identity. Furthermore, the paper makes it clear that our understanding of genomic identity and the importance attached to genomic sameness-over-time matters for the ethical questions raised by certain new gene technologies. ..."
"To examine the scope and outcomes of nationwide GD screening. In this study of GD screening among Ashkenazi Jewish couples in Israel, most couples did not terminate affected pregnancies, although screening was associated with a few pregnancy terminations. The main possible benefit was providing couples with knowledge and control. The divergence of these outcomes from stated goals of screening programs is likely to confront carrier screening programs for low-penetrance diseases. ..."
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