LogoThis Week in CGREAL

a newsletter of the Center for Genetic Research Ethics & Law in the Department of Bioethics, Case Western Reserve University

March 23 , 2009 


Home * Genetics in the News * Genetics in the Literature * Archive


Center News

 

 

 


Opportunities

Call For Abstracts

International Conference
New challenges for biobanks. Ethics, law and governance

The aim of this conference is to explore some of the complex and challenging issues that are linked to the ethical, legal and social issues related to biobanking.

The American Society for Bioethics and Humanities' 11th Annual Meeting is scheduled for October 15-18, 2009, in Washington, DC at the Hyatt Regency Capitol Hill. Scholars are invited to address the issues of translation in the medical humanities and bioethics.

Conferences & Meetings


Genes for Health
03-May-2009

8th IAS-STS Conference 2009 on "Critical Issues in Science and Technology Studies"
May 4-5, 2009

Science and Values: The Politicisation of Science
25-May-2009

International Conference
New challenges for biobanks. Ethics, law and governance
18-20 May 2009
Leuven, Belgium

First Annual Consumer Genetics Show
09-Jun-2009

Summer Institute in Public Health Genetics: Translating Genomics into Policy and Practice

June 22-26, 2009

Seattle, Washington


International Society for the History, Philosophy and Social Studies of Biology Annual Meeting 2009
12-Jul-2009

History of Genetics Conference
9 September 2009

Biobanking 2009
16-Sep-2009

The Age of Personalized Genomics
16-Sep-2009

The New Sentinels of Progress: Investigating Emerging Approaches to Governing Technology
28-Oct-2009

Resources

Centers for Excellence in ELSI Research (CEER)

The ELSI Archives

GenETHX

Bibliographic database of audiovisuals, books, and articles, many of which are indexed using the Bioethics Thesaurus for Genetics.

 

Genetics in the News

DNA on the Loose: Next-Gen Blood Tests Tap Free-Floating Genetic Material: Scientific American "Researchers worldwide are racing to decipher circulating genetic material for better ways to diagnose disease, monitor pregnancy, and even improve food safety. ..."

EEOC Seeks Public Comment on Proposed Regulations Implementing Genetic Information Non-Discrimination Act "The U.S. Equal Employment Opportunity Commission (EEOC) seeks public comment on proposed regulations implementing Genetic Information Non-Discrimination Act (GINA). ..."

Nutrigenomics -- developing personalized diets for disease prevention -- part 2 just published in OMICS "Genomic variation among individuals and populations is a new factor that enriches and challenges our understanding of these complex relationships. Hence, the rapidly emerging intersection of nutritional science and genomics – nutrigenomics – was the focus of a special issue of OMICS ..."

Unraveling Genetics Behind the Human Face | GenomeWeb Daily News | GenomeWeb "Genetic studies of admixed populations are providing new insights into the genetic basis for the wide range of facial traits observed in humans. ..."

Tempted by an at-home gene test? - More health news- msnbc.com "What to know before you swab ..."

Harmonizing biobank research: An achievable world-wide goal "National biobanks play a vital role in modern health research by providing a goldmine of stored human biological samples and data, but they are expensive to run. Can we make better use of these invaluable resources by collaborating across national borders on a larger scale? ..."

Genetics & Public Policy Center || Center releases report on genetic town hall series "The Center has released a summary report on a series of five town halls, part of its Public Consultation Project on Genes, Environment, and Health. Most participants felt that the biobank should go forward, and more than half indicated they were likely to participate in it if asked. ..."

Recreational genomics: Will that be a paternity or cancer test today? "Commercial genetic tests, which can verify risks of cancer risks to paternity, have become commonplace in the Western societies. Yet these tests provide little information and raise a lot more questions ..."

Genetic surveillance for all? - Slate Magazine "What if the FBI put the family of everyone who has ever been convicted or arrested into a giant DNA database? ..."

The Press Association: Intelligence genes theory backed "Inherited genes play a far greater role in intelligence than was previously thought, new research suggests. ..."

Technology Review: A Hole in the Genome "A small chunk of DNA linked to schizophrenia, mental retardation, and autism may change the way we think about disease. ..."

Clinical epidemiology: Archived answers : Nature News "The switch to electronic medical records opens up a potential wealth of data for researchers ..."

Google-Backed 23andMe Seeks Parkinson’s Patients Spit (Update1) - Bloomberg.com "23andMe, the gene-testing company backed by Google Inc., wants to collect DNA from the spit of 10,000 people with Parkinson’s disease to hunt for common genes that may cause the illness or predict patients’ response to drugs. ..."

Design-a-kid clinic puts offer on hold "A fertility doctor who offered to customize traits like eye and hair color is backing down and says he will mess with Mother Nature only for medical reasons - for now. ..."

OBA - REQUEST FOR PUBLIC COMMENT "The Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) is requesting public comments on a draft report to the Secretary of Health and Human Services, "Public Consultation Draft Report on Gene Patents and Licensing Practices and Their Impact on Patient Access to Genetic Tests." ..."

Show me your DNA and I'll tell you your eye color "More and more information is being gathered about how human genes influence medically relevant traits, such as the propensity to develop a certain disease. The ultimate goal is to predict whether or not a given trait will develop later in life from the genome sequence alone ..."

From One Genome, Many Types of Cells. But How? - NYTimes.com "In the wake of the decoding of the human genome in 2003, understanding the epigenome has become a major frontier of research. ..."

Genetics & Public Policy Center || Erroneous vitamin D results should raise red flags for test regulators "Quest Diagnostics recently notified thousands of doctors that some of their patients may have received inaccurate test results from the company. The problem test measures the level of vitamin D in the blood, but the incident illustrates how gaps in the regulatory system for tests – including genetic tests – can wreak havoc on doctors’ abilities to effectively treat their patients. ..."


Genetics in the Literature

 

(2009). "Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics." Eur J Hum Genet.

 

Aarons, J., J. Aulwes, et al. (2008). "An evolving landscape: reproductive genetics, new technologies and health care over the next decade." Contraception 78(6): 433-435.

 

Acharya, K. and L. F. Ross (2009). "Fragile X screening: Attitudes of genetic health professionals." American Journal of Medical Genetics Part A 9999(9999): n/a.

"A survey was conducted of physician geneticists (geneticists) and genetic counselors (GC). The survey addressed GHP's attitudes towards (1) prenatal FrX carrier screening; (2) pre- and full mutation screening of male and female newborns; (3) the single best time for FrX screening over the lifespan; and (4) their willingness to test a normally developing child with a positive family history. Over half would agree to order FrX testing on some normally developing children with a positive family history. In expanding FrX testing and screening to low risk individuals, GHP prefer preconception screening as the single best time. The majority also support prenatal screening and NBS. If NBS were to be introduced, GHP prefer screening to identify boys and girls with both pre- and full mutations. ..."

Alvarez-Castillo, F., J. Cook Lucas, et al. (2009). "Gender and Vulnerable Populations in Benefit Sharing: An Exploration of Conceptual and Contextual Points." Cambridge Quarterly of Healthcare Ethics 18(2): 130-137.

"Vulnerable populations have been defined as those who face a significant probability of incurring an identifiable harm while substantially lacking ability and/or means to protect themselves. Vulnerabilities within population groups can be differentiated by factors that determine the different probabilities of incurring identifiable harms (risks) people face and the means available to them to protect themselves (their protective capacity). Among these factors is gender. ..."

Arnason, G. and A. Van Niekerk (2009). "Undue Fear of Inducements in Research in Developing Countries." Cambridge Quarterly of Healthcare Ethics 18(2): 122-129.

"Prematurely born children who have underdeveloped lungs may suffer a potentially fatal condition called respiratory distress syndrome. A U.S. company developed a drug, called Surfaxin, to treat such poorly functioning lungs. A placebo-controlled study was planned in four Latin American countries (Mexico, Ecuador, Bolivia, and Peru). At the time, in 2001, four treatments were already on the market, although not available to the research populations used in the study. This case is usually discussed as part of the standard of care debate or offered as an example of exploitation. However, what concerns us in this case is rather the choice given to the parents of a prematurely born child under these circumstances: You can give consent for your child's participation in this study. Half of the babies enrolled will receive sham air and are as likely to die as if they had not enrolled. The other half will receive an active treatment and are more likely to survive. The parents can vastly increase their baby's chances of survival by participating in the study. Can the consent be voluntary? Do the parents have any meaningful choice? ..."

 

Blow, N. (2009). "Biobanking: freezer burn." Nat Meth 6(2): 173-178.

Bonham, V. L., S. L. Sellers, et al. (2009). "Physicians' attitudes toward race, genetics, and clinical medicine." Genet Med 4: 4.

"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. Ninety board certified or eligible general internists (50 self-identified whites and 40 self-identified blacks) participated in the study. Analysis included a two-stage independent review and adjudication process. RESULTS:: Both black and white physicians concluded that the race of the patient is medically relevant but did not agree upon why race is important in clinical decisions. They were reticent to make connections among race, genetics, and disease and asserted that genetics has a limited role in explaining racial differences in health. However, they were enthusiastic about the future of genomic medicine, believing that the main benefit will be the potential to improve the efficacy of commonly used drugs. CONCLUSIONS:: 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. ..."

Borry, P., G. Evers-Kiebooms, et al. (2009). "Genetic testing in asymptomatic minors." Eur J Hum Genet.

 

Brand, A. (2009). "Integrative genomics, personal-genome tests and personalized healthcare: the future is being built today." Eur J Hum Genet.

 

Cavazzana-Calvo, M. "Basic research tries to decrease the risks of translational medicine." Gene Ther 16(3): 309-310.

Chennells, R. (2009). "Vulnerability and Indigenous Communities: Are the San of South Africa a Vulnerable People?" Cambridge Quarterly of Healthcare Ethics 18(2): 147-154.

"In recent years, healthcare ethics, international law, and political philosophy have been moving closer together. The previously missing links are considerations of justice and their recognition through legal instruments. The most obvious example to date is the topic of benefit sharing. ..."

 

Churchill, L. R. (2009). "Religion, spirituality, and genetics: Mapping the terrain for research purposes." American Journal of Medical Genetics Part C: Seminars in Medical Genetics 151C(1): 6-12.

"Genetic diseases often raise issues of profound importance for human self-understanding, such as one's identity, the family or community to which one belongs, and one's future or destiny. These deeper questions have commonly been seen as the purview of religion and spirituality. This essay explores how religion and spirituality are understood in the current US context and defined in the scholarly literature over the past 100 years. It is argued that a pragmatic, functional approach to religion and spirituality is important to understanding how patients respond to genetic diagnoses and participate in genetic therapies. A pragmatic, functional approach requires broadening the inquiry to include anything that provides a framework of transcendent meaning for the fundamental existential questions of human life. This approach also entails suspending questions about the truth claims of any particular religious/spiritual belief or practice. Three implications of adopting this broad working definition will be presented. . ..."

 

Collins, H. (2009). "We cannot live by scepticism alone." Nature 458(7234): 30-30.

"Scientists have been too dogmatic about scientific truth and sociologists have fostered too much scepticism — social scientists must now elect to put science back at the core of society, says Harry Collins. ..."

Cox, S. M., M. Kazubowski-Houston, et al. "Genetics on stage: Public engagement in health policy development on preimplantation genetic diagnosis." Social Science & Medicine In Press, Corrected Proof.

" Here we describe and assess our use of theatre as a method of public engagement in the development of health policy on preimplantation genetic diagnosis, a controversial method for selecting the genetic characteristics of embryos created through in vitro fertilization. Emphasizing process and context over emerging outcomes, we reflect on the distinctive contributions of theatre in stimulating public engagement and the need to utilize multiple methods to adequately assess these contributions. We suggest continued dialogue about the possible uses of theatre in health policy development and conclude that greater clarity is needed with regard to citizens' (as well as specific stakeholders, policy makers' and sponsors') desired outcomes if there is to be a suitably nuanced and reflexive basis for assessing the effectiveness of various strategies for public engagement. ..."

 

Dal-Re, R., I. Luque, et al. (2008). "Drug development: assessment of pharmacogenetic studies by Spanish research ethics committees." Pharmacogenomics J 9(2): 86-89.

 

Devitt, T. M. and D. Barton (2008). "When good CF tests go bad." Eur J Hum Genet 17(4): 403-405.

Dorans, K. (2009). "Pilot projects aim to ease access to clinical data." Nat Med 15(3): 226-226.

Dresser, R. (2009). "First-in-Human Trial Participants: Not a Vulnerable Population, but Vulnerable Nonetheless." J Law Med Ethics 37(1): 38-50.

Etchegary, H., F. Miller, et al. "Decision-Making About Inherited Cancer Risk: Exploring Dimensions of Genetic Responsibility." Journal of Genetic Counseling.

" Drawing upon 25 semi-structured interviews with test recipients in Canada, this study explored decisions about inherited breast-ovarian and colon cancer. Qualitative data analysis revealed the pervasive significance of genetic responsibility in test decisions. We highlight three dimensions of genetic responsibility: 1) to know about the self for self; 2) to know about the self for others; 3) to know about the self to oblige others to know. It is argued that these dimensions of genetic responsibility have implications for test decisions, family relationships and other family members’ desire to know (or not know) and to act (or not act) with respect to their own genetic risk. In particular, genetic responsibility may play out as a framing of a relative’s moral obligation to know their risk that could obviate any interest they might have in not knowing. We conclude that perceptions of responsibility to—and of−other family members be thoroughly explored in genetic counseling sessions. ..."

Fanning, J. B. and E. W. Clayton (2009). "Religious and spiritual issues in medical genetics." American Journal of Medical Genetics Part C: Seminars in Medical Genetics 151C(1): 1-5.

"This article provides an overview of a special issue on the religious and spiritual concerns that arise in the provision of genetic services. It introduces some of the challenges in defining religion and spirituality and provides contexts and summaries for the empirical and normative research that appears in the issue. . ..."

 

Flynn, J. (2009). "Would you wish the research undone?" Nature 458(7235): 146-146.

 

Frazer, K. A., S. S. Murray, et al. (2009). "Human genetic variation and its contribution to complex traits." Nat Rev Genet 10(4): 241-251.

 

Gordijn, B. and W. Dekkers (2008). "Sociology and bioethics." Medicine, Health Care and Philosophy 11(4): 375-375.

 

Gurwitz, D. and Y. Bregman-Eschet (2009). "Personal genomics services: whose genomes[quest]." Eur J Hum Genet.

Hoeyer, K., S. Noxoe, et al. (2009). "Embryonic Entitlements: Stem Cell Patenting and the Co-production of Commodities and Personhood." Body & Society 15(1): 1-24.

"The article discusses the history of social entitlements related to reproductive material derived from women seeking care in institutions for reproductive health in Denmark. The author states that the emergence of a market-like exchange form for material derived from human embryos depends on the moral categorization of embryonically derived material and of the holders of entitlements. In addition, Dannish women have less influence on the dissemination of material derived from them, however their entitlements have also found their limits, particularly with commercial transactions. ..."

 

Holden, C. (2009). "BIOMEDICAL RESEARCH: A First Step in Relaxing Restrictions on Stem Cell Research." Science 323(5920): 1412-1413.

 

Hudson, T. J. (2009). "Personalized medicine: A transformative approach is needed." CMAJ: cmaj.1090199.

Ikediobi, O. N. (2008). "Personalized medicine: are we there yet?" Pharmacogenomics J 9(2): 85-85.

 

Kiatpongsan, S. and D. Sipp (2009). "MEDICINE: Monitoring and Regulating Offshore Stem Cell Clinics." Science 323(5921): 1564-1565.

"Unverified medical treatments based on stem cells are proliferating and need oversight. ..."

 

Klimentidis, Y. C. and M. D. Shriver (2009). "Estimating Genetic Ancestry Proportions from Faces." PLoS ONE 4(2): e4460.

"We first measured the degree of Native American, European, African and East Asian genetic admixture in a sample of 14 self-identified Hispanic individuals, chosen to cover a broad range of Native American and European genetic admixture proportions. We showed frontal and side-view photographs of the 14 individuals to 241 subjects living in New Mexico, and asked them to estimate the degree of NA admixture for each individual. We assess the overall concordance for each observer based on an aggregated measure of the difference between the observer and the genetic estimates. We find that observers reach a significantly higher degree of concordance than expected by chance, and that the degree of concordance as well as the direction of the discrepancy in estimates differs based on the ethnicity of the observer, but not on the observers' age or sex. This study highlights the potentially high degree of discordance between physical appearance and genetic measures of ethnicity, as well as how perceptions of ethnic affiliation are context-specific. We compare our findings to those of previous studies and discuss their implications. ..."

 

Korthals, M. and B. De Jonge (2009). "Two different ethical notions of benefit sharing of genetic resources and their implications for global development." New Genetics and Society 28(1): 87 - 95.h

"Can genomics working with crop genetic resources, which can be relevant for developing countries, contribute in reducing the gap between rich and poor countries in using modern biotechnologies? In this paper we concentrate on the extent to which benefit sharing of genetic resources can be a mechanism to harness genomics for development and to reduce the biotechnology divide or genomics divide. First we analyze the existing arrangements and we conclude that these presuppose predominantly a concept of commutative justice, which is at the basis of considerable drawbacks. Secondly we propose arrangements founded on another concept of justice, distributive justice, which forbids enhancing (existing) inequalities. Upstream benefit sharing of genetic resources is proposed as an interesting alternative, which connects with several coalitions of scientists and poor farmers in the third world. ..."

Kraft, P., S. Wacholder, et al. (2009). "Beyond odds ratios - communicating disease risk based on genetic profiles." Nat Rev Genet 10(4): 264-269.

Li, M. D. and M. Burmeister (2009). "New insights into the genetics of addiction." Nat Rev Genet 10(4): 225-231.h

"Drug addiction is a common brain disorder that is extremely costly to the individual and to society. Genetics contributes significantly to vulnerability to this disorder, but identification of susceptibility genes has been slow. Recent genome-wide linkage and association studies have implicated several regions and genes in addiction to various substances, including alcohol and, more recently, tobacco. Current efforts aim not only to replicate these findings in independent samples but also to determine the functional mechanisms of these genes and variants. ..."

Lincoln, Y. S. and G. S. Cannella (2009). "Ethics and the Broader Rethinking/Reconceptualization of Research as Construct." Cultural Studies <=> Critical Methodologies 9(2): 273-285.

"The focus of this article is the conceptualization of a critical anticolonial social science that places ethics and concern for others at the forefront, while at the same time challenges the will to know others that so dominates social science research as construct. The authors propose that research examine and challenge social systems, support struggles for social justice, and construct a nonviolent revolutionary ethical consciousness. ..."

 

Magnus, D., M. K. Cho, et al. (2009). "Direct-to-consumer genetic tests: beyond medical regulation? ." Genome Med 1: 17

"The availability of personalized genomic tests, ordered directly by consumers, is rapidly growing. These tests are unlike other genetic or biochemical tests in the sheer amount of data they provide, but interpretation of these genome-wide analyses for health remains uncertain because of the lack of information about environmental and other factors, and because for the vast majority of genetic loci the associations with disease are weak. Although these tests could provide value to customers by offering tools for social networking or genealogy, there are questions about whether and how to regulate these tests and about the extent to which they provide medical information. ..."

Martin, D., H. Greenwood, et al. "Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing." Health Care Analysis.

"The purpose of this study was to explore the views of members of the general public regarding ethical issues in adult predictive genetic testing. The literature pertaining to ethical issues regarding to adult predictive genetic testing is largely restricted to the views of ‘experts’ who have emphasized informed consent, patent issues, and insurance discrimination. Occasionally the views of patients who have undergone genetic counselling and testing have been elicited, adding psychosocial and family issues. However, the general public has not had the opportunity to contribute. In order to explore theatre as a health policy research tool, 1,200 audience members attended the play ‘Sarah’s Daughters’ in seven Canadian cities, following which audience discussions were audiotaped. This study performed a secondary qualitative analysis of the data to identify the ethical issues of adult predictive genetic testing important to members of the general public. The identified issues were: (1) need for public education; (2) choice to undergo genetic counselling and testing; (3) access to genetic counselling and testing; and (4) obligations regarding the handling of genetic information. Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions. ..."

 

Meisenberg, G. (2009). "The belief that genes cannot be changed is now outdated." Nature 458(7235): 145-145.

 

Meloso, D., J. Copic, et al. (2009). "Promoting Intellectual Discovery: Patents Versus Markets." Science 323(5919): 1335-1339.

"Because they provide exclusive property rights, patents are generally considered to be an effective way to promote intellectual discovery. Here, we propose a different compensation scheme, in which everyone holds shares in the components of potential discoveries and can trade those shares in an anonymous market. In it, incentives to invent are indirect, through changes in share prices. In a series of experiments, we used the knapsack problem (in which participants have to determine the most valuable subset of objects that can fit in a knapsack of fixed volume) as a typical representation of intellectual discovery problems. We found that our "markets system" performed better than the patent system. ..."

Murdoch, C. and T. Caulfield (2009). "Commercialization, patenting and genomics: researcher perspectives." Genome Med 1: 22.

"The impact of commercialization and patenting pressure on genomics research is still a topic of considerable debate in academic, policy and popular literature. We interviewed genomic researchers to see if their perspectives offered fresh insights. Regional Genome Canada centers provided us with relevant researcher contact information, and in-depth structured interviews were conducted. Researcher perspectives were sharply divided, with both support and concern for commercialization regimes surfacing in interviews. Data withholding and publication delays were commonly reported, but the aggressive enforcement of patents was not. There are parallels to the Stem Cell community in Canada in these respects. Genomic researchers, as individuals directly implicated in the field of controversy, have developed varied and often novel insights which should be incorporated into the ongoing debates surrounding commercialization and patenting. Many researchers continue to raise concerns, particularly in relation to data withholding, thus emphasizing the need for a continued exploration of the complex issues associated with commercialization and patenting. ..."

Murphy, T. F. (2009). "Ethics and the prohibition of donor gametes in fertility medicine." Reprod Biomed Online. 18(Suppl 1): 60-7.

"Some countries and societies ban the use of donor gametes in IVF and other assisted reproductive treatments. Supporters of these bans maintain that third-party gametes damage marriage, pose dangers to children and families, put donors at risk, and endanger society at large, but these views are open to moral dispute. In particular, secular moral philosophy does not require couples to rely on their own gametes only to have children. Families can thrive even if children vary in their genetic relationships with parents and siblings. The use of donor gametes merits close attention in matters of safety and oversight, but there is no effect that is so damaging to children, donors or society that justifies closing off their use altogether. Moreover, bans on donor gametes can sometimes be evaded through reproductive tourism, which raises questions of justice for those unable to afford that option. According to one method of measuring moral progress - a method that relies on principles of humaneness and humanity - providing access to donor gametes makes important contributions to happiness and equality. These arguments suggest that the bans against donor gametes in fertility medicine should be reconsidered. ..."

Nathan, D. G. and S. H. Orkin (2009). "Musings on genome medicine: abuse of genetic tests." Genome Med 1: 18.

"The wide general publication of a putative genetic test for athletic supremacy is clearly an abuse of genetics and reveals an undercurrent of hucksterism in biomedical science. ..."

 

Nerlich, B. and I. Hellsten (2009). "Beyond the human genome: microbes, metaphors and what it means to be human in an interconnected post-genomic world." New Genetics and Society 28(1): 19 - 36.h

"Four years after the completion of the Human Genome Project, the US National Institutes for Health launched the Human Microbiome Project on 19 December 2007. Using metaphor analysis, this article investigates reporting in English-language newspapers on advances in microbiomics from 2003 onwards, when the word microbiome was first used. This research was said to open up a new frontier and was conceived as a second human genome project, this time focusing on the genomes of microbes that inhabit and populate humans rather than focusing on the human genome itself. The language used by scientists and by the journalists who reported on their research employed a type of metaphorical framing that was very different from the hyperbole surrounding the decipherment of the book of life. Whereas during the HGP genomic successes had been mainly framed as being based on a unidirectional process of reading off information from a passive genetic or genomic entity, the language employed to discuss advances in microbiomics frames genes, genomes and life in much more active and dynamic ways. ..."

 

Ohata, T., A. Tsuchiya, et al. (2009). "Physicians' opinion for /`new/' genetic testing in Japan." J Hum Genet.

 

Parry, S. (2009). "Stem Cell Scientists' Discursive Strategies for Cognitive Authority." Science as Culture 18(1): 89 - 114.

"With such high stakes, it is important to ask: what discursive strategies do stem cell scientists adopt when seeking to defend their cognitive authority in response to competing claims from multiple actors? In seeking to preserve their cognitive authority, stem cell scientists take on multiple roles in relation to multiple boundaries simultaneously in public debates about SCR. Reframing the embryo question as a technical issue rather than a societal one maintains the cognitive authority of (some) stem cell scientists, while expelling others. This strategy of scientisation operates in stark contrast to processes of politicisation involved when distinguishing embryonic SCR from human reproductive cloning. These multiple discursive practices coalesce, constituting a powerful argument supporting embryonic SCR and contribute to the ongoing expansion of embryonic SCR. ..."

Patch, C., J. Sequeiros, et al. (2009). "Genetic horoscopes: is it all in the genes[quest] Points for regulatory control of direct-to-consumer genetic testing." Eur J Hum Genet.

 

Pin, R. R., J. M. Gutteling, et al. (2009). "Determinants of reactions to gene technology: a generic approach." New Genetics and Society 28(1): 51 - 65.

"This paper examines the reactions to gene technology (the intention to buy gene-tech food, worry about abuse, and the public's desire that different actors be able to influence decisions) in a sample of the Dutch population (n = 1010) and studies the relationship between these reactions and perception, trust, experience, knowledge and personal interest. The survey reveals that large parts of the public are concerned about the abuse of gene technology, are not willing to buy gene-tech products, and want actors to have an influence on legislation and enforcement. Path analysis shows that these reactions can be well explained using a generic model. Trust in authorities, personal interest in gene technology, and perception of gene technology are important predictors of people's reactions, whereas experience and knowledge are less important. ..."

Raz, A. "Can Population-Based Carrier Screening Be Left to the Community?" Journal of Genetic Counseling.

"While disproportionately targeted in genetic research, the Orthodox Jewish community often shies away, due to social and religious constraints, from genetic testing and counseling offered by the public health system. The solution is provided by Dor Yeshorim—a program which has become for many a prototype for the successful merging of modern reprogenetic screening and traditional communities. My commentary focuses on the gaps between the rationale and practice of Dor Yeshorim, and the implications of these gaps regarding the trade-off involved in leaving carrier screening to the community. I conclude with a set of questions raised by the implications of the unintended consequences of community genetics. ..."

Rodriguez, V. (2009). "Access to data and material for research: putting empirical evidence into perspective." New Genetics and Society 28(1): 67 - 86.

"The aim of this article is to put into critical perspective the empirical findings on secrecy and withholding in research. In other words, by taking existing empirical literature into account, it is intended that a crucial question is answered: Is secrecy and withholding in research harmful or innocuous to science? To understand how secrecy and withholding in research have affected academic science, empirical studies have been placed in the wider context of Mertonian underpinnings of the anticommons threat. The turning point in testing the effects of secrecy and withholding of data and material on scientific research was marked by statistical studies based on surveys and bibliometric measures. These two types of empirical studies have given answers to the basic question since academia was threatened by different modes of practicing science. ..."

Rothstein, M. A., Y. Cai, et al. (2009). "Ethical implications of epigenetics research." Nat Rev Genet 10(4): 224-224.

Sagoo, G. S., J. Little, et al. (2009). "Systematic Reviews of Genetic Association Studies." PLoS Medicine 6(3): e28.

 

Secko, D. M., M. Burgess, et al. (2008). "Perspectives on engaging the public in the ethics of emerging biotechnologies: from salmon to biobanks to neuroethics." Account Res. 15(4): 283-302.

"In anticipation of increasing interest in public engagement, this article seeks to expand the current discussion in the neuroethics literature concerning what public engagement on issues related to neuroscience might entail and how they could be envisioned. It notes that the small amount of available neuroethics literature related to public engagement has principally discussed only communication/education or made calls for dialogue without exploring what this might entail on a practical level. The article links across three seemingly disparate examples-salmon, biobanks, and neuroethics-to consider and clarify the need for public engagement in neuroscience. ..."

Shostak, S., J. Freese, et al. (2009). "The Politics of the Gene: Social Status and Beliefs about Genetics for Individual Outcomes." Social Psychology Quarterly 72(1): 77-93.

"Drawing on a nationally representative sample of the US population, this study examines belief in the importance of genes for understanding individual differences in a series of broad domains: physical illness, serious mental illness, intelligence, personality, and success in life. We also assess whether the belief that genetics are important for these outcomes is more common among those in relatively advantaged positions or among those who are more politically conservative. Finally, we consider whether such beliefs predict attitudes toward genetics-related social policies. Our analyses suggest that belief in the importance of genetics for individual differences may well have a substantial effect on attitudes toward genetics-related policies, independent of political orientation or other measures. Our study identifies high levels of endorsement for genes as causes of health and social outcomes. We describe a cultural schema in which outcomes that are "closer to the body" are more commonly attributed to genetics. Contrary to expectations, however, we find little evidence that it is more common for whites, the socioeconomically advantaged, or political conservatives to believe that genetics are important for health and social outcomes. ..."

Singh, J., A. Behal, et al. (2009). "Metagenomics: Concept, methodology, ecological inference and recent advances." Biotechnology Journal 9999(9999): NA.

"Microorganisms constitute two third of the Earth's biological diversity. As many as 99% of the microorganisms present in certain environments cannot be cultured by standard techniques. Culture-independent methods are required to understand the genetic diversity, population structure and ecological roles of the majority of organisms. Metagenomics is the genomic analysis of microorganisms by direct extraction and cloning of DNA from their natural environment. Protocols have been developed to capture unexplored microbial diversity to overcome the existing barriers in estimation of diversity. New screening methods have been designed to select specific functional genes within metagenomic libraries to detect novel biocatalysts as well as bioactive molecules applicable to mankind. To study the complete gene or operon clusters, various vectors including cosmid, fosmid or bacterial artificial chromosomes are being developed. Bioinformatics tools and databases have added much to the study of microbial diversity. This review describes the various methodologies and tools developed to understand the biology of uncultured microbes including bacteria, archaea and viruses through metagenomic analysis. ..."

Stephenson, E., C. Mason, et al. (2009). "Preimplantation genetic diagnosis as a source of human embryonic stem cells for disease research and drug discovery." BJOG: An International Journal of Obstetrics & Gynaecology 116(2): 158-165.

"Embryos surplus to therapeutic requirements following preimplantation genetic diagnosis can be used to derive human embryonic stem cell (hESC) lines carrying mutations significant to human disease. These cells provide a powerful in vitro tool for modelling disease progression in a number of cell types as well as having the potential to revolutionise drug discovery. Robust and reproducible directed differentiation protocols are needed to maximise the potential of these cells. In this review, we explore the current use of hESC and induced pluripotent stem cells in disease-specific research and discuss the use of stem cell technology in drug discovery and toxicity testing. ..."

Tansey, J. D. and M. Burgess (2008). "The meanings of genomics: a focus group study of "interested" and lay classifications of salmon genomics." Public Underst Sci. 17(4): 473-84.

"Risk researchers have traditionally examined technologies that have become stigmatized in the public realm. In this study, we examine a prior cognitive phenomenon, which assumes that technologies are classified according to the non-scientific taxonomies that individuals use to make sense of the world. We describe the coarse taxonomies revealed during five focus groups involving expert and non-expert participants. The study suggests that in discussions of salmon genomics, participants consistently conflate genomic research with transgenic applications. The authors discuss the implications of this phenomenon for public policy. ..."

 

Terry, S. F. (2009). "What do leaders of disease-specific advocacy organizations know about pharmacogenomics and biomarkers, anyway?" Personalized Medicine 6(2): 171.

 

Thornley, I., M. Eapen, et al. (2009). "Private Cord Blood Banking: Experiences and Views of Pediatric Hematopoietic Cell Transplantation Physicians." Pediatrics 123(3): 1011-1017.

"We e-mailed a cross-sectional survey to pediatric hematopoietic cell transplantation physicians in the United States and Canada. Few transplants have been performed by using cord blood stored in the absence of a known indication in the recipient. Willingness to use banked autologous cord blood varies depending on disease and availability of alternative stem cell sources. Few pediatric hematopoietic cell transplantation physicians endorse private cord blood banking in the absence of an identified recipient, even for mixed-ethnicity children for whom finding a suitably matched unrelated donor may be difficult. ..."

Torgersen, H. (2009). "Fuzzy Genes: Epistemic Tensions in Genomics." Science as Culture 18(1): 65 - 87.h

"The concept of epistemic cultures, developed to highlight differences between distant fields such as high-energy physics and molecular biology, can render insights into the cultures related to practices and approaches within genomics. Qualitative interviews with scientists shed light on how computer science and experimental molecular biology co-operate and which problems arise from epistemic differences as the criteria for relevant findings become subject to the disciplinary context. In addition, genomics-like approaches have entered other fields of biological research, whilst systems biology further challenges hypothesis-driven experimentation. This may lead to a new epistemic culture differing from the one previously described. These findings provide insights into how different accounts arise and shed light on general properties of prolific multi-disciplinary research fields. Inconsistencies in the way such fields appear from outside might be considered normal rather than the exception. ..."

Tyler, K. (2009). "Whiteness studies and laypeople's engagements with race and genetics." New Genetics and Society 28(1): 37 - 50.

"This paper proposes a research strategy for examining laypeople's thoughts and reflections on innovations in the science of race and genetics. While some sociologists have shown a reluctance to engage in such discussions, this paper argues that social scientists need to take such views seriously. To do this, the paper brings together an anthropological approach to the study of scientific literacy and recent scholarship in the field of Whiteness studies. The combining of these literatures raises a set of interesting and sometimes uncomfortable questions about the ways in which social scientists and research participants contribute to the reproduction of White power and dominance in Western societies. ..."

 

Weikart, R. (2009). "The Sterilization Movement and Global Fertility in the Twentieth Century." Journal of the History of Medicine and Allied Sciences 64(2): 270-271.

 

Welberg, L. (2009). "The epigenetics of child abuse." Nat Rev Neurosci 10(4): 246-246.

 

 

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