Center NewsCongratulations to Patty Marshall, Aaron Goldenberg, and Christian Simon, who were among the recipients of the the widely sought NIH "Challenge Grants"! Patty Marshall and Aaron Goldenberg's grant, "Community Voices On Health Disparities And Translational Genomics Research", will examine beliefs and experiences that influence understanding of genomic research and its application to health disparities among underserved and minority populations in Cleveland, Ohio, to identify barriers to genomics research relevant to health disparities, and to develop innovative approaches for addressing these barriers through collaborative community-based partnerships. Christian Simon's challenge grant, "Managing Incidental Findings In The Genomic Era", will examine how the prospect of incidental findings is addressed in the context of GWAS and CMA, and continues to build on earlier work he did through a CGREAL seed grant. Jeff Botkin has been appointed by Francis Collins as the Chair of the NIH Stem Cell Eligibility Working Group, which will vet human stem cell lines for NIH funded research, and Dena Davis will be a member of that committee!
OpportunitiesPolicy, Ethics and Life Sciences (PEALS) Research Centre You will work with Professor Erica Haimes, the Principal Investigator and Professorial Fellow at PEALS, on a project entitled, ‘The provision and acquisition of reproductive tissue for stem cell research: engendering, promoting and applying interdisciplinary contributions to policy and practice’. Further particulars can be obtained from Tom Martin, at tom.martin@ncl.ac.uk
INSTITUTE FOR ADVANCED STUDIES
ON SCIENCE, TECHNOLOGY & The IAS-STS is broadly speaking, an institute for
the enhancement of science and technology studies. For application forms and further information: Please visit our website: www.sts.tugraz.at Call For Abstracts
Conferences & Meetings
ASBH Annual Meeting The New Sentinels of Progress: Investigating Emerging Approaches to Governing Technology
HUGO Symposium on Genomics and Ethics, Law and Society (GELS) ResourcesCenters for Excellence in ELSI Research (CEER) Bibliographic database of audiovisuals, books, and articles, many of which are indexed using the Bioethics Thesaurus for Genetics.
|
Genetics in the News
New Rules Protect Patients’ Genetic Information Interim final rules were published today re the implementing sections of the Genetic Information Nondiscrimination Act of 2008.
U.K. Backing Away From DNA, Isotope Nationality Tests? After criticism of its use of DNA testing and isotopic tissue analysis to decide the fate of asylum seekers, the U.K. Border Agency has apparently changed its plans.
Better world: Screen your genes - New Scientist "It's debatable whether getting your genes tested can tell you anything very helpful about your health, for now at least. But it could make a huge difference to your children's. ..."
A study to prevent sudden death in sports by means of genetic testing "Although similar gene sequencers exist in Spain, this is the only device devoted exclusively to the study of alterations linked to sudden death in sports. ..."
‘DNA Transistor’ Could Revolutionize Genetic Testing | Wired.com "The “DNA transistor” could make it faster and cheaper to sequence individuals’ complete genomes. In so doing, it could help facilitate advances in bio-medical research and personalized medicine. ..."
Nick Bostrom on the Future of Human Enhancement - TIME "Modern science already offers ways to enhance your mood, sex drive, athletic performance, concentration levels and overall health. But is such medically driven self-improvement always a good idea? ..."
Autism Speaks' genetic resource exchange, tissue program support findings published "Autism Speaks' Autism Genetic Resource Exchange (AGRE) and the Autism Tissue Program (ATP) continue to play an integral role in continuing genetic research and new findings in the complex autism inheritance and causation puzzle. ..."
New genetic research indicates Jewish priesthood has multiple lineages "Recent research on the Cohen Y chromosome indicates the Jewish priesthood, the Cohanim, was established by several unrelated male lines rather than a single male lineage dating to ancient Hebrew times. ..."
Years of caste system belie Indians' shared ancestry - New Scientist"The analysis showed that castes are descended from a small pool of ancestors and that an initial lack of genetic variability has been reinforced by marriages within the group. The current caste system has resulted in limited gene flow for thousands of years ..."
Keeping DNA 'all in the family' "Kids' right-to-privacy for their genetic material needs better protection ..."
Gene for memory and IQ gives students low grades - New Scientist "The difference between passing and failing an exam may come down to a letter – not a grade or multiple choice answer, but a single nucleotide. ..."
It's in the bank: Human cord blood reprogrammed into embryonic-like stem cells "Human umbilical cord blood cells may be far more versatile than previous research has indicated. ..."
Rare genetic disease successfully reversed using stem cell transplantation "In research that holds out hope for one day developing a potential therapy to treat the fatal disorder, the study shows that the genetic defect in mice can be corrected with stem cell transplantation. ..."
Nanotechnology and synthetic biology: What does the American public think? "Nanotechnology and synthetic biology continue to develop as two of the most exciting areas of scientific discovery, but research has shown that the public is almost completely unaware of the science and its applications. ..."
NIH funds grantees focusing on epigenomics of human health and disease "The National Institutes of Health announced today that it will fund 22 grants on genome-wide studies of how epigenetic changes -- chemical modifications to genes that result from diet, aging, stress, or environmental exposures -- define and contribute to specific human diseases and biological processes. ..."
Genes may explain why children who live without dads have earlier sex ""While there's clearly no such thing as a 'father absence gene,' there are genetic contributions to traits in both moms and dads that increase the likelihood of earlier sexual behavior in their children," notes Mendle. "These include impulsivity, substance use and abuse, argumentativeness, and sensation seeking. ..."
Human genetics: Hit or miss? : Nature News "With such 'hits' would presumably flow a better mechanistic understanding of disease, genetic-testing abilities and even treatment. ..."
New ways to predict violent behavior? "In the future, diagnosing severe personality disorders, evaluating the childhood environment, assessing alcohol consumption and the analysis of the MAOA genotype may provide more accurate means for assessing risk among violent offenders ..."
Genomics shifts focus to rare diseases : Nature News "Disappointing genome-wide studies prompt researchers to tackle single-gene defects. ..."
Gene variation that lets people get by on fewer zees transferred to create insomniac mice "Rare number of people have DEC2 gene variation ..."
MormonTimes - Does DNA disprove Lehi story? "The first rumblings about DNA and the Book of Mormon came about 10 years ago. ..."
Genetics in the Literature
Murray, T. and M. A. Baily (2009). Ethics and Newborn Genetic Screening: New Technologies, New Challenges, John Hopkins University Press."The contributors to this collection study the complex ethical and policy challenges present in the changing newborn screening environment and offer guidance to professionals, policy-makers, and the general public. ..."
Garrett, J. M., K. L. Triman, et al. (2009). Chapter 2 Resources and Strategies to Integrate the Study of Ethical, Legal, and Social Implications of Genetics into the Undergraduate Curriculum. Advances in Genetics, Academic Press. Volume 66: 35-59.
"This chapter provides (1) a set of nine ELSI topic modules that can be incorporated into courses for both majors (from introductory to graduate level) and nonmajors and (2) examples of course pedagogy for specific classes. ..."
(2009). "Genetics without borders." Nature 461(7265): 697-697.
"A UK government scheme to establish nationality through DNA testing is scientifically flawed, ethically dubious and potentially damaging to science. ..."
(2009). "Putting DNA to the test." Nature 461(7265): 697-698.
"Genetic-testing companies lack regulation, and a list of guiding principles does not go far enough. ..."
(2009). "Biobanks need pharma." Nature 461(7263): 448.
"Which is why Europe's citizens need reassurance that their donations will be in the public interest. ..."
"To assess their experience with and attitudes towards anonymous testing for BRCA1/2, genetic counselors were invited to complete an internet-based survey via the NSGC Familial Cancer Risk Counseling Special Interest Group (FCRC-SIG) listerv. In general, a strong consensus exists among counselors that anonymous testing should not be offered routinely. In light of the current legislative landscape, it is of note that a substantial proportion of respondents (42.7%) cited the threat of life insurance discrimination as a reason for pursuing AT, and fewer cited health insurance (30.0%) or employment discrimination (29.1%) as justifications. Since there exists no federal legislative protections against discrimination by life insurance companies, it makes sense that genetic counselors were more responsive to this issue as opposed to the threat of discrimination in health insurance and employment. ..."
Audibert, F., R. D. Wilson, et al. (2009). "Preimplantation genetic testing." J Obstet Gynaecol Can. 31(8): 761-75.
"OBJECTIVE: To review the techniques and indications of preimplantation genetic testing, including preimplantation genetic diagnosis and screening. . ..."
Balck, F., H. Berth, et al. (2009). "Attitudes Toward Genetic Testing in a German Population." Genet Test Mol Biomarkers.
"Aims: In 2001 our group conducted a representative survey for a German population among a total of 2076 respondents aged 14-95 years. The questionnaire administered consisted of 13 items covering the advantages and disadvantages of molecular genetic testing for hereditary diseases. Results: We can summarize that Germans have a markedly more skeptical view than Finns. In our opinion this could well be understood in the context of German history. We assume that this created a less conducive environment for the population to form a clearer attitude toward genetic testing as compared to the Finns. Conclusions: In the light of our results there is certainly a need for more information and education. Further, it would in our opinion be most useful if the German development regarding attitudes to genetic testing, especially after reunification, is studied longitudinally to provide a better understanding of possible developments. ..."
Bathe, O. F. and A. L. McGuire (2009). "The ethical use of existing samples for genome research." Genet Med.
"A framework for accessing these existing samples and related clinical data for research is presented. Archival tissues may be accessed only when there is a reasonable likelihood of generating beneficial and scientifically valid information. To minimize risks, databases containing information related to the tissue and to clinical data should be coded, no personally identifying phenotypic information should be included, and access should be restricted to bona fide researchers for legitimate research purposes. These precautions, if implemented appropriately, should ensure that the research use of archival tissue and data are no more than minimal risk. . ..."
Birnbacher, D. "Thresholds of Coercion in Genetic Testing." Medicine Studies.
"One moot point in bioethical debates about genetic testing concerns the conditions that have to be fulfilled to make individual genetic testing or individual participation in genetic screening programs truly voluntary. Though there is a relatively broad consensus about the non-viability of views on the extremes of the spectrum of opinions, there is considerable disagreement in the middle. This mirrors the difficulties in defining satisfactory demarcation lines between autonomous choice, pressured choice and coercion in cases in which the decision to participate is triggered, wholly or partly, by factors such as material incentives, urgent health needs, massive social expectations, or moral pressure from relatives. In this contribution, some of the semantic conditions and ethical principles concerning coercion are explored with a view to applying them to genetic testing, especially in the context of insurance and participation in clinical trials. ..."
Bombard, Y., F. A. Miller, et al. (2009). "The expansion of newborn screening: is reproductive benefit an appropriate pursuit?" Nat Rev Genet 10(10): 666-7.
Bonham, V. L. J. D., S. L. P. Sellers, et al. (2009). "Physicians' attitudes toward race, genetics, and clinical medicine." Genetics in Medicine 11(4): 279-286.
"Purpose: This qualitative study explored black and white general internists' attitudes about the relevance of race in clinical care; views of the relationships among race, genetics, and disease; and expectations about the future of genetics and health., Methods: We conducted 10 racially concordant focus groups of primary care physicians in five metropolitan areas in the United States. Understanding the similarities and differences between black and white physicians' attitudes and beliefs about race, health and genetics is important for the translation of genomics to clinical care. ..."
"The article discusses the disputed belief that autism is a genetic disease, the biomedicalization of reproductive technology, and the feminist response. The term geneticization was coined by scholar Abby Lippman to name the relationship between "genetic determinism" and reproduction. The idea that autism is genetic has led some scientists to research behavioral genetics. Other topics include genetic citizenship, autism advocacy, families of autistic people, women's reproductive choice, and public opinion about people with disabilities. ..."
Campbell, H., I. Rudan, et al. (2009). "Human population structure, genome autozygosity and human health." Genome Med. 1(9): 91.
"A major transition in human population structure is currently under way, moving from a historical metapopulation, comprising small and mainly rural endogamous communities, to large and increasingly panmictic urban populations. This process is predicted to increase outbreeding, and preliminary data from genomic surveys have helped to quantify the potential magnitude of the effects. Population genetic trends of this nature should result in a reduced burden of recessive disorders, and have a favourable impact on complex diseases influenced by partially recessive genetic variants of smaller effect. The overall outcome is expected to be beneficial for a range of traits associated with human health and disease that show dominance variance. ..."
Chandrasekharan, S. and R. Cook-Deegan (2009). "Gene patents and personalized medicine - what lies ahead?" Genome Med 1(9): 92.
"Our preliminary studies have found patent claims that, if strictly enforced, might block the use of multi-gene tests or full-genome sequence data. Yet new technologies promise to reduce the costs of complete genomic sequencing to prices that are comparable to current genetic tests for a single condition. Courts, companies, and policy makers seem unlikely to allow intellectual property to obstruct such technological advance, but prudent policy will depend on careful analysis and foresight. The SACGHS report signals that the US government is paying attention, and increases the odds that policy will foster socially beneficial uses of genetic testing while preserving intellectual property incentives and mitigating the problems that arise from legal monopolies. ..."
"In this article we explore the notion of function creep as we discuss why and how it has taken place on forensic DNA databases. We also consider what future function creep it is possible to envisage. As even security enhancing technologies may contribute to insecurities, what safeguards should be in place to render function creep governable? We use the Norwegian DNA database, expanded considerably as recently as September 2008, as our primary case for discussion. Additionally we use examples from the English and Welsh DNA database which, considered world leading, may be an indication of where other DNA databases are heading. The article isn''t data-driven but draws on a wide spectrum of data: governmental documents, public and Parliamentary debates, and interviews. ..."
De Marco, M. (2009). "Views on Personalized Medicine: Do the Attitudes of African American and White Prescription Drug Consumers Differ?" Public Health Genomics 23: 23.
"The aims for this study that were developed collaboratively as part of a community-academic partnership are: (1) What are the attitudes and perceptions of prescription drug consumers concerning personalized medicine and genetic testing for drug compatibility and how do they differ between African American and white patients? (2) What are the attitudes and perceptions of patients concerning race-based prescribing and how do they differ between African American and white patients? Methods: We conducted 6 focus groups, 2 with white participants and 4 with African American participants. Focus groups were audio-recorded, transcribed, and analyzed to ascertain common themes. Results: Our results suggest that personalized medicine and genetic testing, though not well understood by lay persons, were considered positive advances in medicine. However, participants also voiced concerns about these advances that differed by race. Conclusion: This study points to the need to include perspectives of at-risk communities as we move toward wider use of this technology. ..."
Deplanque, D., G. Birraux, et al. (2009). "Collections of Human Biological Samples for Scientific Purposes. Why do Current Regulation Need to be Clarified and How?" Therapie 64(4): 259-67.
"The definition of biobanking activities should be clarified, and regulatory procedures, including consultation of the Ethics Committee, declarations to the Ministry of Research and the protection of personal data, should be simplified. It is also of great importance to correctly define the modalities in which Biobanks are granted their authorisations. The role of Ethics Committees regarding the evaluation of information and the consent procedures should also be clarified, particularly when samples from children are used, or when the samples are used for genetic analyses. As well as scientific and public health aspects, the storage of human biological samples may also have important economic consequences. It is hence crucial to adapt the procedure for submitting patents, particularly when several public or private partners are working together. The possible changes to both French and European laws planned in the next months would be an ideal time to introduce these changes. ..."
Dermitzakis, E. T. and A. G. Clark (2009). "Life After GWA Studies." Science 326(5950): 239-240.
Dubochet, J. (2009). "Genomics for citizens. Providing the public with more and better knowledge to address the challenges of the twenty-first century." EMBO Rep 10(10): 1076-9.
"This article provides a review of literature of articles and texts on prenatal genetic technologies and is limited specifically to research that focuses on the intersection between the dynamics of prenatal screening; the regulation of family life and reproduction; the issues of disabilities, risk, and shame; embodied affect; and contemporary molecular medicine. Three themes emerge from the literature: the fact that these technologies have a transformative impact on the social process of human reproduction, are powerful ways of regulating family normality and health, and have the unintended consequence of dividing women into "good" and "bad" reproducers. It is argued that in reviewing the literature it is important to take a critical focus to expose some of the repressive dynamics embedded in the diffusion and proliferation of these technologies. ..."
"This paper reviews the literature on genetic privacy, especially since 1995 and the first proposal for national genetic privacy legislation. Since that time, a majority of states have passed some form of genetic privacy legislation, and efforts to pass federal legislation are ongoing. Such new laws, however, remain untested in the courts and their effects are unclear. If they fail to provide additional protections against discrimination for most people, their most significant impact may be in their ability to either diminish or enhance the power of genetic information and to influence the way individuals view themselves and others. How does “genetic exceptionalism”—the idea that genetic information is different from other types of medical information—relate to “genetic essentialism”—the idea that we are to a large extent shaped by our genes? Anthropological views on genetics and personhood bring a new perspective to this ongoing debate. Implications for counseling practices are also explored. ..."
Fangerau, H. "Genetics and the Value of Life: Historical Dimensions." Medicine Studies.
"This paper examines the historical dimensions of current debates surrounding genetics and the value of life. Thus, the paper is conceptual and offers a heuristic model and analytical categories for answering the question, “what is so intriguing about genetics that it can be closely connected with different value concepts,” although the consideration of the moral, biologic, or economic value of life may lead to completely different ideas of man and society. A special emphasis will be placed on the use of genetics for the purposes of the eugenics movement. . ..."
"The current article examines the influence of genetics and evolution on acts of extreme and criminal violence among human primates. Moderate aggression can function to increase an organism''s reproductive success; extreme violence can place the organism at unnecessary risk. Genetic polymorphisms that have been linked to extreme acts of violence are reviewed as is research elucidating how genetic risk and environmental stress may interact to increase risk of extreme violence. Extreme violence is viewed as high-end variance in an evolutionarily adaptive process in which the propensity for aggression and violent behavior, in moderate doses, has been adaptive for individual humans. ) ..."
Field, D., S.-A. Sansone, et al. (2009). "'Omics Data Sharing." Science 326(5950): 234-236
"Setting a common goal of weighing the scientific benefits of using racial and other social heuristics with testable estimates of the potential social harms of racialization can reduce both the unreflexive use of race and other social identities in biological analyses as well as the unreflexive use of racialization in social critiques of genetics. Treating social identities used in genetic studies as objects for investigation rather than artifacts of participant self-report or researcher attribution also will reduce the extent to which genetic studies that report social identities imply that membership in social categories can be defined or predicted using genetic features. ..."
Goring, H. (2009). "Evidence for a genetic contribution, and a chromosome 4 locus, to musical aptitude." J Acoust Soc Am 126(4): 2278.
"The genetic influences on mental diseases, skills, and behaviors are essentially entirely unknown. We have performed a family study to investigate the genetic etiology of musical aptitude. Our results suggest that genetic factors in aggregate influence musical aptitude, with chromosome 4 appearing to harbor a major locus. ..."
"This article draws upon findings from an interview study with twenty-three families about participation in a large-scale population genetic database called, "Generation Scotland: The Scottish Family Health Study" (GS: SFHS). GS: SFHS aspires to become a DNA identification vehicle for the discovery of genetic contributions to diseases that affect the Scottish population e.g., cancer, heart disease and mental illness. Little is known about why families invited to take part in this type of research do so, especially when a family member is acting as a "proxy" recruiter and is healthy with no known genetic (or otherwise) disease. Who will agree to be such a "proxy recruiter" (or "proband"), who GS: SFHS will recruit and why has been shown to be dependent on the existence of family disease, proband use of indirect and direct coercion, and the status of family relationships more generally. This study adds to these findings demonstrating that participation is limited by family history affecting the numbers of family members who can be recruited and enhanced by gender affecting who will be recruited. Although not mutually exclusive, the reasons for participation by probands were tied to leaving a "healthy legacy," whereas for the family members it was because they were asked and felt obliged to or were persuaded to by the proband. This research concludes: 1) biology is a choice not a given; 2) yet the biological basis of family relationships can give rise to a gendering of recruitment to the clinical study; and 3) women continue to be "kin-keepers". ..."
Hawkins, N., J. de Vries, et al. (2009). "Planning for translational research in genomics." Genome Med 1(9): 87.
"Translation of research findings into clinical practice is an important aspect of medical progress. Even for the early stages of genomics, research aiming to deepen understandings of underlying mechanisms of disease, questions about the ways in which such research ultimately can be useful in medical treatment and public health are of key importance. Whilst some research data may not apparently lend themselves to immediate clinical benefit, being aware of the issues surrounding translation at an early stage can enhance the delivery of the research to the clinic if a medical application is later found. When simple steps are taken during initial project planning, the pathways towards the translation of genomic research findings can be managed to optimize long-term benefits to health. This piece discusses the key areas of collaboration agreements, distribution of revenues and recruitment and sample collection that are increasingly important to successful translational research in genomics. ..."
"Based on an analysis of autonomy-related issues in predictive genetic diagnosis and genetic screening programmes, this contribution stresses the central relevance of a broad notion of autonomy for the discussion of ethical issues raised in connection with predictive genetic testing and genetic screening programmes. Only against the background of such a broad notion of autonomy, which stresses not only free and informed decision-making but also the relevance of long-term prospects for leading a self-determined life in familial and social contexts, can the manifold autonomy-related issues linked to predictive genetic testing be given adequate consideration. ..."
Hinman, A.et al. (2009). "Newborn dried bloodspot screening: mapping the clinical and public health components and activities." Genetics in Medicine 11(6): 418-424.
"Purpose: To define components and activities of the entire Newborn Dried Bloodspot Screening process, highlighting long-term follow-up-both clinical and public health-as a basis for defining requirements for information systems to support the process. Successful newborn screening systems rely on effective partnerships to ensure that there is appropriate screening, diagnosis, and follow-up. Coordinating care across multiple settings and service providers, ensuring continuity of care over time, and generating new knowledge about heritable disorders requires information systems that can fully support the process. Developing such information systems requires a clear understanding of the Newborn Dried Bloodspot Screening process and documentation of the roles and responsibilities for all involved. Business process analysis can be applied to Newborn Dried Bloodspot Screening and other child health programs to help achieve that outcome. ..."
Hunter, P. (2009). "The secret garden. The human digestive system is teeming with microbiotic life, but just how important are these interlopers for health and disease?" EMBO Rep 10(10): 1082-6.
"This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the ethical questions raised by genetic exceptionalism in such a way as to do justice to the normative scope and epistemological complexity. The author argues that the current genetic exceptionalism discourse is restrictive and offers little opportunity for exploring viable and ethically justifiable solutions regarding the implementation of genetic information in medical practice. Discourses on genetic exceptionalism should not only adhere to scientifically consistent criteria but also reflect individual perceptions and cultural values, enriched by adequate historical reflection. ..."
Keogh, L. A., C. M. van Vliet, et al. (2009). "Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications?" Med J Aust 191(5): 255-8.
"OBJECTIVE: To assess whether knowledge of insurance implications influenced uptake of genetic testing by participants in a research study of the causes of colorectal cancer. Identification of people with a mutation in an MMR gene has clinical importance, and such screening may be a cost-effective way to reduce the burden of colorectal cancer in the community. If people are choosing not to obtain genetic information because of how it will affect their eligibility for insurance, reforms to existing insurance practices are indicated. ..."
Kevles, D. "Eugenics, the Genome, and Human Rights." Medicine Studies.
"This article assesses the potential impact of current genomics research on human rights against the backdrop of the eugenics movement in the English-speaking world during first third of the twentieth century, The echo of eugenic interventions in societies far beyond Nazi Germany reverberates in the ethical debates triggered by the potential inherent in recent molecular biological developments. Mandatory eugenic restrictions of reproductive freedom seem less likely in countries committed to civil liberties than under authoritarian governments. More likely, consumer choice might sustain a trend towards voluntary “improvement” of biological inheritance in the future. However, the increasing availability of genetic information and the patenting of human genes may lead, respectively, to a loss of reproductive autonomy and a reduction in equitable access to medical care; hence new regulations and/or legislation may be required to ensure appropriate control over genetic information and use of intellectual property rights in human genes. ..."
"I review how genome-wide association studies are robustly identifying new disease susceptibility loci, providing insights into disease pathogenesis and potential targets for drug therapy. Some of the remarkable advances being made using current genetic approaches in Crohn's disease, coronary artery disease and atrial fibrillation are described, together with examples from malaria, HIV/AIDS, asthma, prostate cancer and venous thrombosis which illustrate important principles underpinning this field of research. The limitations of current approaches are also noted, highlighting how much of the genetic risk remains unexplained and resolving specific functional variants difficult. There is a need to more clearly understand the significance of rare variants and structural genomic variation in common disease, as well as epigenetic mechanisms. Specific examples from pharmacogenomics are described including warfarin dosage and prediction of abacavir hypersensitivity that illustrate how in some cases such knowledge is already impacting on clinical practice, while in others prospective evaluation of clinical utility and cost-effectiveness is required to define opportunities for personalized medicine. There is also a need for a broader debate about the ethical implications of current advances in genetics for medicine and society. ..."
"The potential benefits of biobank research are well known. Also, the ethical implications of genetic research on stored tissue samples are well discussed in existing literature. The inclusion of tissue samples from minors may have significant scientific value. However, this inclusion raises specific ethical questions. We have performed a systematic search of the literature and found 21 theoretical and empirical articles dealing with the issue. After review, we distilled five clusters of themes: consent, risks, benefits, return of results, and ownership. We have described the different components of these themes, as they occurred in the literature and have provided a discourse on the topic. . ..."
"This article illustrates in which sense genetic determinism is still part of the contemporary interactionist consensus in medicine. Three dimensions of this consensus are discussed: kinds of causes, a continuum of traits ranging from monogenetic diseases to car accidents, and different kinds of determination due to different norms of reaction. On this basis, this article explicates in which sense the interactionist consensus presupposes the innate–acquired distinction. . ..."
"Science is finding evidence of genetic diversity among groups of people as well as among individuals. This discovery should be embraced, not feared ..."
"The article focuses on the association of human genes and sociology, specifically on the research of sociologist Guang Guo on the impact of family environment on the education of children in the U.S. It notes that Guo used genetic data to develop sociological research. . ..."
Lucassen, A., C. Hill, et al. (2009). "'Ethnicity testing' before adoption; a help or hindrance?" Arch Dis Child.
"Several different companies now sell 'DNA ancestry' or 'ethnicity' testing kits via the internet. A small sample of a person's blood or saliva can be sent via the post, its DNA extracted, and a panel of polymorphic genetic markers can be analysed. This information is then used to provide a breakdown of a person's 'racial origins' by categorizing someone as a percentage of their ancestry that is African, East Asian, Native American or European. Whilst these kits have proved very popular with adults interested in genealogy, we have recently become aware of their use in adoption and fostering cases in attempts to determine a child's ethnicity. We believe such use is inappropriate and indicates both a misunderstanding of the concept of ethnicity and the technical limitations of such genetic tests. We urge extreme caution in their use in any adoption and fostering decisions. ..."
Maienschein, J. (2009). "Cloning and stem cell debates in the context of genetic determinism." Yale J Health Policy Law Ethics 9 Suppl: 565-84.
Nathan, D. G. and S. H. Orkin (2009). "Musings on genome medicine: the Obama effect redux." Genome Med 1(9): 86.
"From the point of view of genome medicine, Barack Obama has made two vital policy decisions: he has chosen a new director of the National Institutes of Health, and his proposed change in United States healthcare policy will have profound effects on genome medicine and, indeed, all of academic medicine. ..."
"The authors find differences in results from two direct-toconsumer genetics-testing companies. They therefore give nine recommendations to improve predictions. ..."
Pardo, R., M. Engelhard, et al. (2009). "The role of means and goals in technology acceptance. A differentiated landscape of public perceptions of pharming." EMBO Rep 10(10): 1069-75.
"This pilot study therefore aimed to explore South African traditional beliefs regarding common childhood genetic disorders. Three focus groups were conducted with fifteen grandmothers from different cultural backgrounds in an urban community. Questions pertained to the role of the grandmother, traditional beliefs regarding causes of genetic disorders, explanations of heredity, and prevention and management of genetic disorders. Results indicate a variety of cultural explanations for causes of childhood genetic disorders. These causes can be classified into categories related to lifestyle, behavior, social issues, culture, religion, genetic, and familial causes. Prevention and treatment issues are also highlighted. These findings have implications for genetic counseling practice, which needs to include a greater focus on cultural issues. ..."
Primorac, D. (2009). "Human Genome Project-based applications in forensic science, anthropology, and individualized medicine." Croat Med J 50(3): 205-6.
"There is considerable variability in the effectiveness and toxicity of psychotropics used to treat mental health disorders in children and adolescents. Pharmacogenetic (PG) testing is beginning to be used to decrease the time it takes to reach therapeutic response and decrease the occurrence of adverse drug reactions in children and adolescents treated with psychotropics. This article reviews the pharmacogenetics literature and uses a clinical scenario to illustrate the essential genetic/genomics competencies pediatric nurses need to meet when providing care to patients whose medication therapy is being guided by PG testing. ..."
"We analyse 25 diverse groups in India to provide strong evidence for two ancient populations, genetically divergent, that are ancestral to most Indians today. We therefore predict that there will be an excess of recessive diseases in India, which should be possible to screen and map genetically. ..."
"In this article I explore the intersections among behavioral genetics, 'new' eugenics, and disability and their implications for future conceptualizations of impairment and its perceived role in socially deviant behavior and societal 'reform'. Critics from a number of different backgrounds have pointed out the shortcomings of behavioral genetics, most notably that it has not yielded any meaningful findings. Missing from most discussions, however, is a critical assessment of the degree to which genetic research remains reliant upon socially constructed notions of impairment. In this article I offer an initial foray into this often neglected thread in an otherwise powerful critique of behavioral genetics. I contend that any future discussions of the intersection of behavioral genetics, 'new' eugenics and disability must contain a critical analysis of the psychiatric and psychological 'disorders', 'defects', 'illnesses' and 'conditions' at the center of most research programs. ..."
"The article discusses the racial and social issues surrounding reprogenetics and similar technologies in the U.S. It is noted that the cost of human reproductive technology is often too high for minority women to afford and that some are encouraged not to have children. Scholar Marsha Darling has argued that such practices are a kind of eugenics. The advertising that is used by fertility clinics, the author notes, often features white children and ads for minority women egg donors. The views of genetic testing of fetuses by medical personnel is discussed. ..."
"The article explores how prenatal care affects the self-determination of women by forcing them to make decisions about prenatal testing for which they are ill equipped, despite emphasis on "informed choice." The author considers how women are counseled by medical professionals regarding pregnancy in countries such as China, Mexico, and India. The article also considers medical definitions and statistical probabilities of an at-risk pregnancy, limitations of prenatal testing in determining fetal abnormalities, and genetic counseling. ..."
"Purpose: Racial and ethnic disparities in health are evident among a range of diseases and health care services. New genetic technologies are likely to increase these disparities as access to expensive genetic tests further widens the gap. Our findings raise concern about several barriers among minorities and calls for a development of educational and communication strategies that facilitate in narrowing the gap between racial and ethnic groups. .."
"The article reviews the book "Promising Genomics: Iceland and deCODE Genetics in a World of Speculation," by Mike Fortun. ..."
"Because many institutions struggle to determine how best to support their institutional review board programs, we conducted an exploratory study to identify the individual, group, and institutional factors that may influence commitment to the role responsibilities of being on an IRB. We defined this commitment as consisting of time spent preparing for IRB meetings, views of the importance of serving on an IRB, time dedicated to IRB activities relative to other academic committee service, and willingness to attend IRB meetings. Our study suggests that member commitment to IRB role responsibilities may be related to adequate compensation for time spent on IRB activities, serving on an IRB whose chair fosters a supportive group dynamic, IRB size, length of tenure, efficiency of protocol review, receiving training on the ethical and regulatory requirements for research with humans, and attendance of principal investigators at convened meetings. ..."
"In this essay the co-authors adopt the position that 'mainstream' medicine seems to be taking some dangerous turns and that these turns have serious potential consequences for human variance and diversity. The authors believe that genetic testing and medication for bipolar disorder are problematic illustrations of the ways in which a 'brave new world' is now being foreshadowed and, unfortunately, will perhaps be realized in the near future. In order to frame our discussion, we incorporate close readings of literary and cinematic texts. The essay is situated by a discussion regarding 'mentalism' and the consumer/survivor/ex-patient rights and disability rights movements. Specific implications for the fields of social work, rehabilitation and mental health practice are discussed. ..."
"Proponents of synthetic biology have been quick to realise that these challenges call for reviews of the societal and ethical aspects of synthetic biology. This paper shows that the template commonly adopted for such reviews draws on bioethics. It goes on to show that this template is far from ideal, both because of limitations in the way that bioethics has been institutionalized and because of key differences between the regulatory demands on synthetic biology and on bioethics. The paper concludes that broader models of societal and ethical review of synthetic biology are urgently required. ..."
"We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. ..."
8197-8308
* 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.