This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Center News
Registration is now open for the 2008 Translating ELSI Conference!
Opportunities
Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University Call for papers 4S/EASST: Acting with science, technology and medicine Rotterdam, The Netherlands Due February 15 Call for Papers - APHA Genetics Forum: Public Health Without Borders Due February 15 Call for papers Graphing Genes, Cells and Embryos II. Cultures of Seeing 3D and Beyond Due February 15, 2008 Ethics, Public Health and the Environment February 21-24, 2008 San Antonio, TX Call for papers - New! Transhumanism and Religion Consultation Chicago, IL Due February 25, 2008
Call for papers Winchester, UK Due February 28, 2008 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 - New! World Congress of Bioethics 2008 Extended: Due March 1, 2008 Call for Papers - New! Due March 1, 2008 Call for Papers Crossing Borders in the History of Technology Victoria, B.C. Due March 3, 2008 Call for Applications - New! Robert Wood Johnson Foundation (see attached) Due March 26 Genomics and Society: Setting the Agendas April 18-19, 2008 Rutgers University
What's The Use of Race? Call for Papers - New! 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)
|
Genetics in the News
The Bioethics of a Three-Parent Embryo (Wired) "Jonathan Moreno about what it meant and how America would react. ..."
Blogs Is Baseball Already Losing the Next Steroid Battle? (THE NEW REPUBLIC) "Representatives exposed baseball's apparent failure to be proactive in combating other types of performance enhancers: the medical-exemption loophole, HGH, and gene doping. ..."
Early Birds, Night Owls: Blame Your Genes (National Geographic) "Those who struggle to get out of bed in the morning may be able to hold their genes responsible, new research suggests. ..."
From Trickle Down Genomics to the Virtuous Circle ( The Personal Genome) "The field of translational research is evolving from its trickle down, bench-to-bedside roots into something which approaches an ongoing dialog between scientists and clinicians. ..."
Morphine Dependency Blocked By Single Genetic Change (Science Daily) "Morphine's potential to create dependency has been almost completely eliminated in research with mice by genetically modifying a single trait on the surface of neurons. The study scientists think a drug can be developed to similarly block dependency. ..."
Yeast Life Extended Ten Times; Offers Hope for Humans (National Geographic)"Scientists have discovered a means to extend the life span of yeast cells tenfold and they say further research on unusual communities in Ecuador might offer hope for humans too. ..."
Stem Cell Banking (New York Times) "The companies, some of them small and financially shaky, are capitalizing on the excitement surrounding stem cells. The ventures portray themselves as a form of biological insurance. Cells collected from a person could one day be used to treat that person without immune system rejection. ..." [Related: Cord Blood Registry Reports a Significant Increase in Number of Children Needing Access to Their Own Cord Blood Stem Cells for Treatment ( Yahoo! Finance) "Company Anticipates Trend to Accelerate in 2008 ..."]
A Dying Breed (New York Times) "The world s food supply is increasingly dependent on a small and narrowing list of highly engineered breeds. Poor countries, which possess much of the world s vanishing biodiversity, may also be discarding breeds that possess undiscovered genetic advantages. ..."
Google wife targets world DNA domination (Telegraph)
"23andme is using the opportunity of Davos - the annual jamboree of business leaders, politicians and assorted celebrities - to roadtest the product in Europe. ..."
Scientists claim victory in blocking stem-cell law (Times) "The Government s justification for requiring express consent had been that some patients who agreed to donate cells may not have realised that their tissue could later be used for cloning. The letter in The Times said that the requirement jeopardised years of expensive research and the cultivation of unique tissue samples as raw material for cloning. ..."
When Drug Trials Go Wrong, Patients Have Little Recourse (Wall Street Journal) "The case highlights one aspect of the legal and regulatory void surrounding clinical trials. ..."
American Journal of Medical Genetics Part C: Seminars in Medical Genetics "The February 15, 2008 issue of the American Journal of Medical Genetics is devoted to ethics and policy regarding children and genetics. ..."
Bug guts map brings scientists closer to understanding different bugs' role in the body "Scientists have made a major step towards understanding precisely which bugs in the gut are involved in which processes in the body, by mapping the different species of bugs living in seven members of the same Chinese family. ..."
DNAWitness "The DNAWitness" test provides you with a simple and objective description of your subject's ancestral origins. Eliminate whole populations of people in your search for the truth. Don’t waste another moment chasing false leads that keep you from your goal of solving the crime. ..."
Environmental epigenetics has potential for preventing and treating disease "New research on environmental influences on health and disease has begun to shed light on why genetically identical individuals demonstrate different characteristics, such as susceptibility to disease. ..."
Gene protects adults abused as children from depression "Some forms of a gene that controls the body's response to stress hormones appear to protect adults who were abused in childhood from depression, psychiatrists have found. ..."
Genetic Testing for Psychiatric Diseases "Three companies Neuromark, Psynomics, and SureGene are joining the genetic testing fray. Each is offering genetic tests for variants associated with mental illness. ..."
Is political orientation transmitted genetically? "Your genes play a part in your politics ..."
Microbes as climate engineers "We might think we control the climate but unless we harness the powers of our microbial co-habitants on this planet we might be fighting a losing battle ..."
SeqWright "Our service can detect nearly one million common genetic variations, known as SNP's, in the hopes of providing you with useful information regarding your genetic history and predisposition to disease. SeqWright will only report SNP’s which we have deemed, through the analysis of publications with significant statistical size and power, to have an established association with a disease state or trait. ..."
Study finds genetic link to human herpes susceptibility "There s a high probability that people who are prone to herpes simplex virus (HSV) outbreaks can inherit that susceptibility through their genes ..."
Viruses for a healthy pregnancy "Sequences of DNA in the human genome that originated from ancient viral infections have some surprising effects on our bodies and are even essential for a healthy pregnancy ..."
Genetics in the Literature
Braben, D. W. (2008). Scientific freedom : the Elixir of civilization. Hoboken, N.J., John Wiley."Donald W. Braben argues that creativity and the freedom to discover is hindered by lumbering bureaucracies that threaten the very future of civilization. Dr. Braben outlines the intellectual obstacles facing today’s researchers and discusses what needs to be done to restore the freedom that can transform scientific understanding. ..."
"The rise of managerial capitalism at the turn of the twentieth century brought with it an array of homologous practices, all of which transformed the social fabric. With transformations in political economy and new technologies came new conceptions of biology, and it is in the relationships of social class to breeding practices, of middle managers to biological information processing, and of transportation to experiences of space and time, that we can begin to locate the conditions that made genetic thinking possible, desirable, and seemingly natural. ..."
(2008). "Positively disruptive." Nat Genet 40(2): 119-119.
"Companies now provide individuals with their own genotypes and associated risks extrapolated from association studies. The best outcomes would be to convert patients into active investigators and navigators of their own health, to make genetics the foundation of medical education and to expand the scope of genetic counseling as a profession. ..."
"Environmental influences (both familial and individual-specific) shape alcohol expectancies, while heritable influences may predispose to motives for drinking. Individual differences in expectancies are moderated by alcohol use, suggesting that sources of individual differences in expectancies may vary in drinkers versus abstainers. ..."
"The production of a human/nonhuman chimera raises theoretical questions about the nature of the species barrier in human evolution and about the larger philosophical question of the relationship between humans and nonhuman animals. Engaging with these questions provides critical perspective on the evolution of Homo sapiens and on the relationship between culture and biology in the human past as this past increasingly anticipates the future. ..."
"This essay traces the interlinked origins of two concepts found in Charles Darwin's writings: "unconscious selection," and sexual selection as applied to humanity's anatomical race distinctions. These readings, it is argued, also led Darwin to his theory of sexual selection as applied to race, a theme he discussed mainly in his book The Descent of Man (1871). There Darwin described how the racial version of sexual selection operated on the same principle as unconscious selection. He thereby effectively reunited these kindred concepts. ..."
"This article outlines the current debate over race in contemporary biomedical research and offers a case study of the RaceSci: A History of Race in Science Web project. One of the earliest electronic resources devoted to the history of race in science, RaceSci was relaunched in early 2007 to expand its focus on the present. To date, historians are generally absent from the academic and public dialogue on the "return" of racial science. In response, RaceSci aims to better engage historians with the raced-based organization of current scientific research, particularly in genetics, drug development, and the rise of so-called "personalized" medicine. ..."
"There exists broad variation in breast cancer risk among carriers of BRCA1 and BRCA2 mutations. ..."
"This article examines some of the policy issues related to newborn screening and specifically focuses on three disorders recommended for newborn screening, cystic fibrosis (CF), medium-chain acyl CoA dehydrogenase Deficiency (MCADD), and beta-ketothiolase (BKT). ..."
"The aim of this study is to gather information from European clinical geneticists about their practices and attitudes with regard to presymptomatic and predictive genetic testing in minors. There was strongest support for testing young children when it provides a clear medical benefit, such as in the case of FAP and MEN2A. However, there is disagreement about when to provide predictive genetic testing for childhood-onset disorders for which therapeutic or preventive measures exist with some supporting the rule of earliest onset and others giving parents wider discretion. However, for childhood-onset disorders that do not have therapeutic measures, the majority of the respondents is unwilling to provide a presymptomatic or predictive genetic test. With respect to adolescents, many held a cautious position regarding presymptomatic and predictive genetic testing. Most clinical geneticists were unwilling to provide a presymptomatic or predictive genetic test for adult-onset diseases, except if it might provide a medical benefit. Although adolescents might be legally in the position to request a presymptomatic or predictive genetic test personally, the clinical geneticists are significantly more willing to provide a test if this request is made together with the minor's parents. This variability demonstrates the need for clinical geneticists to discuss their contradicting views and to develop harmonized practices throughout Europe. ..."
"To better understand the opinions of BRCA mutation carriers regarding the genetic testing of minors and the cognitive and affective processes underlying these opinions, we interviewed BRCA mutation carriers and their adult offspring who had learned of their parent's BRCA mutation. Semi-structured interviews were conducted with 53 parents and 22 offspring. 52% (n = 39) of participants were opposed to the testing of minors. Responses to an open-ended question indicate that many participants (24%, n = 18) feel that testing could be permitted for some minor offspring. Psychological risks and the insufficient maturity of minors were frequent concerns but potential to impact health behaviors was frequently cited as a reason to support the genetic testing of minors. These preliminary results suggest that many BRCA mutation carriers and their adult offspring have concerns about, or are opposed to the genetic testing of minors. However, a significant minority in our study would support testing minors. Greater support for testing among offspring could indicate increasing requests for early genetic diagnosis. ..."
"The paper presents an analysis of policy directives needed to respond to threats of harm (e.g., violence against third parties) that may arise in the course of conducting descriptive epidemiological research with high-risk populations. It identifies two key areas where new policies must be developed to guide researchers conducting such investigations. The paper recommends that: (1) an NIH consensus panel be convened to set standards, analogous to Common Toxicity Criteria (CTC) criteria, to classify the severity of different types of indirect, non-research-related risk; and (2) case-based training modules be developed and incorporated into public health research ethics courses and training programs, to enhance researcher judgments in determining the likelihood of harm in different situations. In addition, researchers, Institutional Review Boards (IRBs) and community advisory groups must consider the issue of staff safety and the effectiveness of available responses to reduce the threat of harm. The author reviews and discusses implications for informed consent and IRB review. ..."
"In June 2005, Italy held a referendum on repealing the law on medically assisted fertilization (Law 40/2004), which limits access to artificial reproduction to infertile couples, and prohibits the donation of gametes, the cryopreservation of embryos, preimplantation genetic diagnosis (PDG), and research on human embryos. The referendum was invalidated, and the law remained unchanged. The Italian political e bioethical debate on assisted reproduction was manipulated by the Catholic Church, which distorted scientific data and issues at stake with the help of Catholic politicians and bioethicists. What happened in Italy shows that some perverse socio-cultural e political mechanisms are spreading the absurd and anti-historical view that scientific and technological advancements are threatening democracy and personal freedom. Scientists should not only contrast the political attempts at limiting freedom of scientific research, but also tell politicians, humanists and citizens that the invention of Western science with its view of scientific community as an "open society", contributed and still contributes, through scientific education, to the construction and maintaining of the moral and political values underlying Western democracies. ..."
"Advocacy groups have continued to actively lobby for the expansion of screening to other conditions detectable in newborns and, currently, for states' adoption of a uniform core screening panel. They have also been generally favorable to the offer of fee-based supplemental screening services. In the early years of newborn screening, groups such as the National Association for Retarded Children (NARC) were strongly imbued with a public-health ethic. This ethic has apparently eroded over time as the result of both broad social changes and the increasing entanglement of such groups with pharmaceutical and biotechnology companies. A history of newborn screening reveals both continuities and discontinuities in the agendas and funding of patient advocacy groups and in their rhetorical strategies. In particular, it demonstrates that there have always been tensions as well as partnerships with medical and other professionals, although the nature and intensity of the former have been affected by advocacy groups' increasing numbers, resources, and cultural authority. It also illuminates differences that have emerged as advocacy groups have informally allied with industry and adopted new rationales in support of access to testing. ..."
10.1016/j.socscimed.2007.08.010
"We aimed to explore theoretically and empirically the role of written information in informing participants in research. We conducted a qualitative study involving semi-structured interviews with 29 unpaid healthy volunteers who took part in a genetic epidemiology study in Leicestershire, UK. We found that people may make sense of information about research, including the content of written information, in complex and unexpected ways. Many participants were unable to identify precisely the aim of the study in which they had participated, saw their participation as deriving from a moral imperative, and had understandings of issues such as feedback of DNA results that were inconsistent with what had been explained in the written information about the study. They had high levels of confidence in the organisations conducting the research, and consequently had few concerns about their participation. These findings, which suggest that some misunderstanding may be a persistent and incorrigible feature of people's participation in research, raise questions about the principle of informed consent and about the role of written information. ..."
"Claims for reimbursement of child support, the reversal of property settlements and compensation can arise when misattributed paternity is discovered. The ethical justifications for such claims seem to be related to the financial cost of bringing up children, the absence of choice about taking on these expenses, the hard work involved in child rearing, the emotional attachments that are formed with children, the obligation of women to make truthful claims about paternity, and the deception involved in infidelity. In this paper it is argued that there should not be compensation for infidelity and that reimbursement is appropriate where the claimant has made child support payments but has not taken on the social role of father. Where the claimant's behaviour suggests a social view of fatherhood, on the other hand, claims for compensation are less coherent. Where the genetic model of fatherhood dominates, the "other" man (the woman's lover and progenitor of the children) might also have a claim for the loss of the benefits of fatherhood. It is concluded that claims for reimbursement and compensation in cases of misattributed paternity produce the same distorted and thin view of what it means to be a father that paternity testing assumes, and underscores a trend that is not in the interests of children. ..."
"The article offers information on the biological understanding of different races. A study conducted on the genetic differences between racial groups shows that various human groups shares a ninety-nine.ninety-nine percent genetic similarity. In conducting a study on racial differences, it is important that researchers should consider the culturally constructed racial categories. Several studies mixed together various groups under the label of commonly used category, including "Caucasian," African American," and "Asian." ..."
"We conducted in-depth interviews with 18 young people who had undergone testing, to explore the range of harms and benefits that they perceived were associated with their tests. Participants were eight individuals who were tested for Huntington disease (two gene-positive, six gene-negative) and ten who were tested for familial adenomatous polyposis (five gene-positive, five gene-negative). At the time of their test they ranged from 10 to 25 years of age. Harms described included knowledge of future illness, witnessing distress in parents, negative effects on family relationships and friendships, effects upon employment and school, experiencing regret, feeling guilty and having to confront difficult issues. Benefits included knowledge of gene-negative status, relief from uncertainty, witnessing relief in parents, feeling able to plan for the future, positive effects on family relationships and friendships, feeling empowered and experiencing a sense of clarity about what is important in life. Harms were described in relation to gene-negative test results, as were benefits in relation to gene-positive test results. The testing process itself had several positive and negative effects for young people, distinct from the actual test result. ..."
"This paper explores responses of geneticists interviewed in the UK, the USA and Russia about the cultural meanings of their work. When discussing this question the interviewees distinguished between their 'personal' and 'professional' views. When talking as 'lay people' they demonstrated a wide range of opinions none of which was perceived as incompatible with scientific practice. When talking as 'scientists' the respondents stressed that the cultural implications of their research were not a matter of their professional concern. It is suggested that these two trends in their answers could be explained by scientists tending to relegate the implications of their work to the realm of the social which they construe as divorced from scientific practice. ..."
Fielder, J. (2007). "The ethics of creating designer children." IEEE Eng Med Biol Mag 26(6): 42-4.
..."
..."
..."
"Recent improvements in the production of cloned embryos in non-human primate models, combined with advances in the ability to establish human ESC lines and direct their differentiation along specific pathways support the notion that therapeutic cloning may soon be feasible. This review summarizes the status and current feasibility of the approach and the technical hurdles that must be addressed, and discusses the ethical issues that have arisen as a result. ..."
..."
Hausman, D. (2008). "PROTECTING GROUPS FROM GENETIC RESEARCH." Bioethics 22(3): 157-165.
"This paper considers what sort of protection for groups from the risks of genetics research should be provided and by whom. The paper categorizes harms by distinguishing process-related from outcome-related harms and by distinguishing two kinds of group harms. It argues that calls for community engagement are justified with respect to some kinds of harms, but not with respect to others; and it cautions that community engagement may itself be harmful. ..."
"Unlike experimental research for generating peer-reviewed journal publications and intellectual property, there is no similar paper trail or smoking gun if human gametes and embryos are utilized solely for personnel training without the patient's knowledge and consent. Discarded human gametes and embryos are readily available and can be convenient for training inexperienced personnel in assisted reproduction techniques. Very often, only verbal consent is obtained from patients, without written documentation, and this situation can potentially lead to abuse (training courses for generating additional revenue; and there is a possibility of discarded human material being utilized for such profit-making ventures without patients' prior knowledge). Hence, it is the moral duty and obligation of international professional bodies to advocate and draft clearly defined regulatory guidelines and legislative framework for this purpose. ..."
"The entire costs of a screening program, including not only instrumentation but also labor and time costs; initial, repeat, and confirmatory testing; screening sensitivity and specificity; and short and long-term followup, should be considered in decisions regarding expansion of screening programs. The decision model cited in this study can serve as a tool in exploring alternatives for critical decisions regarding the addition of new disorders to existing newborn screening panels. The evaluation of genetic disorders in this study can be used as a prototype of an approach to evaluating screening for any newborn genetic/metabolic disorder. ..."
"The significant involvement of the gut microbiota in human health and disease suggests that manipulation of commensal microbial composition through combinations of antibiotics, probiotics and prebiotics could be a novel therapeutic approach. A systems perspective is needed to help understand the complex host–bacteria interactions and their association with pathophysiological phenotypes so that alterations in the composition of the gut microbiota in disease states can be reversed. In this article, we describe the therapeutic rationale and potential for targeting the gut microbiota, and discuss strategies and systems-oriented technologies for achieving this goal. ..."
"In this project, we surveyed follow-up coordinators, including one in the District of Columbia and two in Georgia, about protocols for stakeholder notification for SCD and trait. On average, 3.4 stakeholders were notified for a positive screening for SCD, compared to 2.4 stakeholders for sickle cell trait (P < 0.001). In multivariate analyses for SCD, we found a 2.9% increase in stakeholders notified for each additional year of universal screening mandated in a state (95% CI: 1.4-4.4%). For trait, we found an 8.5% increase in stakeholders notified for each additional follow-up staff (95% CI: 1.3-15.7%), and a 1.3% increase for each additional percent of black births in the state (95% CI: 0.1-2.5%). Wide variation exists in stakeholder notification by NBS programs of positive screenings for SCD and trait. This variation may alter the effectiveness of NBS programs by location of birth. ..."
"This article describes parts of an unusually realistic experiment on the comprehension of expert testimony on mitochondrial DNA (mtDNA) sequencing in a criminal trial for robbery. Specifically, we examine how jurors who responded to summonses for jury duty evaluated portions of videotaped testimony involving probabilities and statistics. Although some jurors showed susceptibility to classic fallacies in interpreting conditional probabilities, the jurors as a whole were not overwhelmed by a 99.98 percent exclusion probability that the prosecution presented. Cognitive errors favoring the defense were more prevalent than ones favoring the prosecution. These findings lend scant support to the legal argument that mtDNA evidence (with modest exclusion probabilities) should be excluded because jurors are prone to overvalue such evidence. ..."
Kharaboyan, L., B. M. Knoppers, et al. (2007). "Understanding umbilical cord blood banking - What women need to know before deciding." Womens Health Issues 17(5): 277-280.
"Here, we describe the evolutionary conserved genes that are involved in lifespan regulation of model organisms and humans, and explore the reasons of discrepancies that exist between the results found in the various species. Although the study of model organisms has revealed potential candidate genetic mechanisms determining aging and lifespan, to what extent they explain variation in human populations is still uncertain. ..."
"This article presents an overview to a special issue on ethical and policy issues in pediatric genetics. It discusses challenges to current practices and policies with regard to newborn screening, biobanking initiatives, and predictive genetic testing of minors.. ..."
"Ecological genomics is a research field that aims to determine how a genome or a population of genomes interacts with its environment across ecological and evolutionary timescales. ..."
"Recent advances in high-throughput genotyping technology, and a better understanding of the genetic architecture of complex disease has led to the development of genome-wide association studies (GWA), which are providing novel and important insights into disease processes. The results from these studies could be of substantial clinical importance in the relatively near future. In this review, we present some recent, exciting findings from studies that have used the GWA approach, and discuss the clinical application of identifying disease susceptibility genes and variants. ..."
"Using Ian Hacking's notion of "making up people", this paper argues that human chimeras--people who contain more than one genetically distinct cell population--have been made up. As with multiple personality, the discourse surrounding the phenomenon of chimerism offers a novel vantage point for examining the socio-political processes of subject formation. Evidence from archives, interviews with cell scientists, and popular sources will show that, in a strange leap that has come to seem self-evident, journalists, laypeople, and even scientists have come to equate genomes with selves and hence conclude that chimeras are more than one person. Thus far, the challenge that chimeras pose to the simple alignment of genome-body-person has been limited both by relegating chimeras to freak show status and by liberal institutions' demands that individuals be singular. ..."
"A century ago, the German botanist Hans Winkler (best known for coining the term 'genome') accomplished two novel transplantations. First, he produced a single plant that grafted together two completely disparate species: tomato and nightshade. Second, he chose the descriptive word 'chimaera' to name his innovation, transplanting the term from mythology to biology. This paper features Mrs McK, the first human chimera, and thus follows the term from botany to clinical medicine. Her remarkable story, pieced together from the notes, drafts and correspondence of Robert Race and his colleagues at the MRC Blood Group Unit, draws attention to the significance of names and naming. ..."
"Newborn screening (NBS) represents the largest volume of genetic testing. The 45-year history of NBS has demonstrated its benefits, as well as the importance of an evidence base. The recent addition of tandem mass spectrometry (MS/MS) resulted in a fivefold increase in the number of tests. Experience with MS/MS also showed that laboratory tests are just one part of the NBS system. The lessons learned from NBS will provide important insights as we move into the predictive, preventive, and personalized era of genomic medicine. ..."
"The purpose of this study was to describe research participants' attitudes and judgments about data release and their preferences for varying levels of control over decision-making. Despite wide variation in judgments, there was general interest in receiving information and making decisions about data sharing. Participants preferred multiple data sharing options, but were more likely to consent to public data release when given fewer options. For existing samples most participants felt that genomic information should not be publicly released without explicit consent from research participants.Specific information about data sharing ought to be included in the consent process for all genetic research. These participants desire multiple data release options, but the effect, if any, on consent to public release deserves further investigation. ..."
..."
Parisi, L. (2007). "Biotech: Life by Contagion." Theory, Culture & Society 24(6): 29-52.
"This article will discuss recent developments in genetic engineering in relation to nonlinear dynamics of evolution such as endosymbiosis, re-theorized by Lynn Margulis in the l970s. Bacteria invented the genetic engineering of cellular bodies across species barriers 3900 million years ago. In this sense, genetic engineering marks the re-emergence of a new (hut ancient) mode of sex and reproduction, bacterial sex. Such re-emergence, far from defining an imitation of bacteria, points to a new modulation of life: the acceleration of the variables of life or the emerging mutations of matter. Challenging the Darwinian and neo-Darwinian models of evolution (the arhorescent line of genetic descent), the molecular sciences and technologies of genetic engineering (i.e. enclosymbiosis) contribute to redefining life as a turbulent auto-catalytic assembly of bacterial colonies. Drawing on Bergson's creative evolution and Deleuze and Guattari's machinic nature, the article will lay out the asymmetric relation between emergent dynamics of engineered life and what they emerge from (virtual matter). ..."
Phillips, E. M., A. O. Odunlami, et al. (2007). "Mixed race: Understanding difference in the genome era." Social Forces 86(2): 795-820.
"This article presents the findings of a qualitative study of multiracial individuals' understanding of identity, race and human genetic variation. Participants in this study explore their identity and its relationships to their health care interactions. Participants also share their views on race-based therapeutics, health disparities and the connections between race, ancestry and genetics. Their voices highlight the limitations Of racial categories in describing differences within our increasingly diverse communities. The genomic era will be a pivotal period in challenging current understandings and uses of racial categories in health. ..."
"Even if informed consent for the collection, storage and use of biological materials is a hard process, donors can actually be provided with sufficient information and choices to give a 'really informed consent'. The proposed model can be a useful guideline for the development of specific informed consent forms to be used by researchers. It can also be a good tool to let the donors know which information and guarantees they can request from researchers. ..."
" In this article an ethical framework internationally developed as a charter for medical professionalism is used to guide approaches to ethical dilemmas of breast cancer genetic testing. Specifically, three ethical principles are explored as they relate to testing: primacy of patient, patient autonomy, and social justice. Approaching breast cancer genetic testing from this framework could help to ensure thoughtful and ethical practices in this rapidly evolving field. ..."
"The objective of this article is to review guidelines that address counselling in the context of genetic testing in order to summarise what aspects of counselling they consider most important, and to examine how they construct the ideal of genetic counselling. The ideal of genetic counselling is rather consistent in the guidelines, but there are some contradictions between the requirements of objective information-giving and adapting counselling to counsellee's circumstances. ..."
"In this paper, I explore the decision-making explanations that women at risk of BRCA-related breast and ovarian cancer provide when accounting for their decision to undergo genetic testing. In doing so, I treat women's accounts critically, and examine how and why the women verbalize their explanations in the manner that they do. ..."
"This article analyzes data from a longitudinal, ethnographic study conducted in the United States to examine how 100 mothers of children with genetic disorders used the Internet to interpret, produce, and circulate genetic knowledge pertaining to their child's condition. We describe how they came to value their own experiential knowledge, helped shift the boundaries of what counts as authoritative knowledge, and assumed the role of genetic citizen, fighting for specific rights while shouldering and contesting concomitant duties and obligations. This exploration of e-health use contributes to our understanding of the social practices and power relations that cut across online and off-line worlds to co-produce genetic knowledge and genetic citizenship in multiple contexts. ..."
"This review summarizes current research on the heritability of tobacco use phenotypes and genetic association studies of smoking-related behaviors. Although progress has been made in genetics research on smoking behavior, many studies have methodological limitations, including insufficient samples for detecting gene-gene and gene-environment interactions and use of less refined phenotypes. As this research advances, it will be important to study and address practical, economic, ethical, and social barriers to the translation of genetics research on tobacco use to clinical practice. ..."
Serrano, L. (2007). "Synthetic biology: promises and challenges." Mol Syst Biol 3: 158.
..."
Shevell, M. I. (2007). ""Eugenics" by another name?" Can J Neurol Sci 34(4): 494-5.
..."
"This study investigates beliefs about the determinants of such behavioral characteristics as intelligence, athleticism, obesity, and alcoholism by asking respondents to the 2004 General Social Survey to rate vignettes describing individuals exhibiting these characteristics along a 21-point scale ranging from complete genetic determination to complete environmental determination. Contrary to our expectations, we found no effect of any of the vignette characteristics on the ratings, and only two significant main effects of respondent demographic characteristics: Black respondents were more likely to use genetic ratings; and better educated respondents, environmental ones. ..."
"A tension exists between personalized medicine's need for access to and use of scientific advances and the patent system's reward of exclusive use or nonuse to innovators. This tension may result in fewer diagnostic and therapeutic tools brought to the market and generally adopted. The risk seems particularly acute with respect to the diagnostic and therapeutic tools arising from genetic testing that hold specific value for a subset of the population. The judicial system has introduced ethical exceptions that overcome a patent holder's right to exclude; these judicial overrides relate to the provision of certain types of medical procedures and the development of certain types of new drugs, and not, apparently, to the use of diagnostic and therapeutic tools essential to the success of personalized medicine. A serious question exists as to whether legislative action is necessary to increase public access to genetic testing. ..."
Spicker, P. (2007). "Research without consent." Social Research Update(51): 1-4.
"The article focuses on the issues concerning the arguments on the legality of asking consent from participants for social research in Great Britain as emphasized in the codes of research ethics from the British Sociological Association. The said argumentation has been driven by the assumption in which the consent of participants or subjects is considered a requirement for research to be accomplished. Information about the advantages and the disadvantages of the said standards in research has also been discussed. ..."
..."
"This paper looks at the implications for prenatal genetic testing. What is the purpose of such testing? Who is intended to benefit? Is it the prospective parents, to enable them to make informed reproductive decisions? Or society, by reducing the prevalence of genetic diseases? Or can prenatal testing for adult-onset conditions be done 'for the sake of the child'? While the last justification, if plausible, would provide a better justification than the other two, it is not clear that even reproductive autonomy justifies prenatal genetic testing for untreatable adult-onset diseases. Nor can a rationale be provided by the other possibilities since neither society nor the future child is likely to be benefited by such testing. ..."
"The intestinal commensal microbiota is a dynamic mixture of essential microbes that develops under key influences of genetics, environment, diet and disease. Population profiles differ along the gastrointestinal tract, from the lumen to the mucosa, and among individuals. The total microbiota population outnumbers the cells in the human body and accounts for 35-50% of the volume of the colonic content. Key physiological functions of the commensal microbiota include protective effects exerted directly by specific bacterial species, control of epithelial cell proliferation and differentiation, production of essential mucosal nutrients, such as short-chain fatty acids and amino acids, prevention of overgrowth of pathogenic organisms, and stimulation of intestinal immunity. Oral probiotics are living microorganisms that upon ingestion in specific numbers exert health benefits beyond those of inherent basic nutrition. Emerging evidence indicates prophylactic and therapeutic utility for probiotic consumption in gastrointestinal health and disease. ..."
"Using the example of Pompe disease, we argue that waiving the requirement for informed consent is appropriate for research evaluating the screening phase of potential NBS tests when data support the potential health benefits of testing and when other research safeguards are present. The regulatory requirement for informed consent can be waived if a research study meets criteria of minimal risk, protecting rights and welfare, and practicability. In population-based NBS research, the main risks are related to false positive results and results with ambiguous implications for treatment - risks that are comparable to those posed by many tests newly added to NBS programs without prior population-based NBS research. Waiving the informed consent requirement facilitates the development of flexible strategies for informing and educating parents about NBS research that reflect the logistics of population-based NBS screening. A strict interpretation of the regulatory requirement of informed consent may create significant logistical and financial barriers to adequate evaluation of NBS tests. Without a broader interpretation of this regulatory requirement in NBS research for which there is evidence of a clinically meaningful benefit from treatment, we may create incentives for the implementation of inadequately evaluated NBS tests. ..."
"Surveys were conducted with 187 mothers undergoing BRCA1/2 testing who had children 8-21 years old. Mothers' most-to-least frequently cited information resource needs were: literature (93.4%), family counseling (85.8%), prior participants (79.0%), support groups (53.9%), and other (28.9%; e.g., pediatricians and psychologists). Seventy-eight percent of mothers were interested in accessing three or more resources. Testing motivations, decision-making vigilance, and decisional conflict were associated with mothers' need level; mothers with a greater interest in testing to learn about their children's risks, those with more vigilant decision-making styles, and those with higher decisional conflict had the greatest need. ..."
"The purposes of this report are to examine the current status of ethics of medical research involving human subjects and the nature of the ethical challenges facing this research, to identify the weakness of the current system of safeguards for ethical research, and to stress the importance of the ethical character of the researcher, which is the safeguard that has the greatest potential for protecting the research subjects. Researchers appreciate the risks of human medical research that create ethical dilemmas and the need for an ethical compromise in order to proceed with the research. The main elements of the compromise, formulated primarily from experiences in the Second World War, include: (1) the dominant position of the ethical principle of autonomy; (2) the demand for a signed informed consent; (3) the likelihood of improving health with the research protocol, which must be approved by a duly appointed supervising committee; and (4) an acceptable risk/benefit ratio. The main weakness of this set of safeguards is the difficulty with obtaining a truly informed consent. The new challenges to ethical medical research stem from certain types of research, such as genetic and stem cell research, and from the increasing involvement of the industry in planning and funding the research studies. Developing medical researchers with an ethical character and knowledge about ethics in medicine may be the most effective safeguard in protecting participants of medical research experiments. ..."
Vitetta, L. and B. Anton (2007). "Lifestyle and nutrition, caloric restriction, mitochondrial health and hormones: scientific interventions for anti-aging." Clin Interv Aging 2(4): 537-43.
"Given that the aging process is slow and gradual, it presents with opportunities and options that may ameliorate and improve the overall functional capacity of the organism. Small changes in function may be more amenable and likely to further slow down and possibly reverse some of the deleterious effects of aging, rather, than when the incremental changes are large. This overall effect may then translate into a significant compression of the deleterious aspects of human aging with a resultant increase in human life expectancy. ..."
"As the numbers and types of conditions which can potentially be tested for in PGD rises, the question of how, and indeed what limits should be set is timely.This paper explores the views of staff working in or linked to one PGD Unit in the UK, as to how they saw these potential changes. The paper thus provides an opportunity to develop greater understanding of how staff working in a morally contentious, innovative area viewed the potential expansion of their work, prior to that expansion taking place. Key themes include "drawing lines" on behalf of others, particularly with the current emphasis on individual reproductive autonomy; and balancing the invasiveness and possible risks of PGD treatment against the "seriousness" of the condition. More broadly, the paper highlights the complexities involved in trying to develop general ethical principles to govern the use of ever evolving reproductive technologies. ..."
"We examined the independent effect of race/ethnicity on perceptions of the usefulness of different sources of health information. We analyzed data from a cross-sectional telephone survey of black, Latino, and white adults (n = 515) in Durham County North Carolina, in 2002. Compared to white respondents, Latinos and black respondents were more likely to perceive as useful the local health department, ministers/churches, community centers, television, and radio. Latinos were less likely than white and black respondents to report the pharmacy as a useful source of medical information. There are substantial racial/ethnic differences in perceptions of certain medical information sources. Medical information designed for minority populations may be more effective if disseminated through particular sources. ..."
Wolpert, L. (2007). "Is cell science dangerous?" J Med Ethics 33(6): 345-8.
"This study examines whether attributing smoking to genetic influences is associated with reduced quitting and whether this effect is mediated by perceived control over smoking. A total of 515 smokers (65.0%) viewed genetic factors as playing some role in causing their smoking. They had lower perceived control over smoking than smokers who viewed genetic factors as having no role in causing their smoking. Attributing smoking to genetic causes was not associated significantly with a lower probability of quit attempt success. Attributing smoking to genetic factors was associated with lower levels of perceived control over smoking but not lower quit rates. This suggests that learning of one's genetic predisposition to smoking during a pharmacogenetically tailored smoking cessation intervention may not deter quitting. Further research should examine whether the lack of impact of genetic attributions on quit attempt success is also found in smokers provided with personalized genetic feedback. ..."
"This article aims to contribute to shared decision-making processes where two or more patients are involved. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. ..."
5798-5912
* To subscribe, send an email to lists@case.edu with "subscribe thisweekincgreal <your-email-address>" in the message body. To unsubscribe, send an email to lists@case.edu with "unsubscribe thisweekincgreal <your-email-address>" in the message body.