Center NewsErica Haimes has been invited to join the UK's Human Fertilisation and Embryology Authority's Ethics and Law Advisory Committee and the International Society of Stem Cell Research (ISSCR) Ethics and Public Policy Committee, in order to provide insight into social science research on, and the social aspects of, assisted conception. Opportunities
Call For Abstracts
Conferences & MeetingsThe Future of Genomic Medicine III Does Genetics Matter Help, Hype and the New Horizon of Epigenetics World Congress of Gene 2009 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.
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Genetics in the News
Class Action Challenging Patents on Breast Cancer Genes Can Proceed "A federal judge has allowed a class action to proceed against the U.S. Patent Office and Myriad Genetics that argues the company's patents on two human genes associated with breast and ovarian cancer are unconstitutional. ..."
hMutant gene conclusively linked to Parkinson's disease "New research into a rare genetic disorder called Gaucher disease has revealed a genetic predisposition for people with this disease to Parkinson's disease. ..."
Lighter sentence for murderer with 'bad genes' : Nature News "Italian court reduces jail term after tests identify genes linked to violent behaviour. ..."
The Drug Does Work"Modafinil was never meant for people like me. It was invented to stop narcoleptics falling asleep, then adapted to let soldiers stay up all night. But gradually it was noticed that as well as increasing wakefulness, the drug improved concentration. With finals looming, they wanted to boost their concentration and fight the urge to slack off. ..."
DNA testing providers : DNA Test Index "The number of opportunities to test your DNA is large and growing. Here is a list of companies, non-profits, and other providers. ..."
23andMe Tests NFL Players' DNA for Athletic Genetic Factors"23andMe, Inc., conducted the genetic analysis of both former and current NFL players, as well as scientific controls, to investigate how genes impact athletic performance. Over 100 players were recruited for the study, the largest genetic examination ever conducted on professional American athletes. I ..."
DNA barcodes: Creative new uses span health, fraud, smuggling, history, more "Scientists to seal historic agreement on plant barcodes; DNA in permafrost may reveal Earth's pre-historic Life ..."
Want A Job In Akron? Hand Over Your DNA - Taking Liberties - CBS News "It's not unusual for employers to conduct criminal background checks during the hiring process. But the University of Akron has taken this to a surprising new level. The Ohio school now reserves the right to require any prospective faculty, staff, or contractor to submit a DNA sample, which genetic-testing experts say makes it the first employer in the nation to take such an extreme and potentially intrusive step. ..."
Call For Post-Mortem Genetic Testing To Become Routine In Cases Of Sudden Death "It is currently illegal to retain tissue for DNA testing without consent of the deceased's relatives except in forensic cases. A Clinical Geneticist and Clinical Lead for Cardiac Genetics for the Northern Genetics Service argued for a change to the current situation. ..."
Will genomics help prevent the next pandemic? "A collection of essays, perspectives, and reviews that explores how genomics—with all its associated tools and techniques—can provide insights into our understanding of emerging infectious disease. ..."
New Genomic Zoo to Collect DNA of 10,000 Vertebrate Species | Popular Science "The massive Genome 10K Project will help biologists watch evolution in action on the genetic level ..."
Scientists See Signs of a Resurgence for Gene Therapy - NYTimes.com"Three recent successes, though small, prompted hopes among scientists that a still-experimental idea for correcting genetic disorders might be back. ..."
Diagnosis Emerges from Complete Sequencing of Patient's Genes "For the first time, scientists have diagnosed a genetic disease by completely sequencing all of a patient’s genes. ..."
Wanted: Consistency in Social and Behavioral Science Institutional Review Board Practices "Why do some social and behavioral science IRBs require researchers at other institutions to obtain local IRB approval for low-risk data collected in person, but not for low-risk data collected over the internet? ..."
Breakthroughs in genetics leave families facing agonising choices - Telegraph "Prospective parents with a family history of killer genetic diseases could be allowed to undergo embryo screening to protect their children - without finding out whether they are themselves doomed to an early death. ..."
Lawsuit Banning Human Gene Patents Continues, Court Rules | Popular Science "The ACLU is one step closer to getting patents on human genes banned after a federal court today ruled that its lawsuit can continue. ..."
Genes as weather vanes for disease | Science in the Triangle "Personalized medicine - the idea of using gene-based information to individualize medical care - was one of eight hot research areas that RTI International's scientific advisors recommended for further scientific scrutiny. ..."
PHG Foundation | New European personalised medicine initiative "A new European initiative has formed for the purpose of promoting the use of diagnostics for personalised medicine. ..."
Hunting for the Prozac gene "Researchers seek genetic 'Prozac markers' to find a simple test for treating depression ..."
Genes show when a woman's biological clock will stop "It is a dilemma facing a growing number of young women: can I delay having a baby until my career is more established? A genetic test that could make this decision less of a gamble might be on offer by next year, thanks to the discovery of a gene that seems to predict the rate at which a woman's egg supply diminishes. ..."
'Culture of we' buffers genetic tendency to depression"NonWestern communal cultures keep biology from having its way with depression ..."
Genetics in the Literature
Adamkova, V., M. Veleminsky, et al. (2009). "Volunteer's willingness to genetic testing - lack of the understanding of the matter." Physiol Res. 58(Suppl 1): S53-4."Medical genetic research achieved in last decade many efforts leading to better understanding of inherited basis of human diseases. This will not be possible without the participation of patients and controls. However, the general understanding of the background and possibilities of genetic association studies is very low. It was confirmed by study of university of students. Because of the fair of misuses of the individual genetic information, significant part of participants refused the use of already donated blood samples for genetic testing but agreed with using of buccal swabs for the same analysis. To enhance the general knowledge's of the population, leading to realistic expectations not just about genetic predictive power but also about the eventual risks in behind will be the major mission in the next years. ..."
Antonio, M. (2009). "WHEN SPEED TRULY MATTERS, OPENNESS IS THE ANSWER." Bioethics 23(7): 385-393.
"In this paper I analyse the ethical implications of the two main competing methodologies in genomic research. I do not aim to provide another contribution from the mainstream legal and public policy perspective; rather I offer a novel approach in which I analyse and describe the patent-and-publish regime (the proprietary regime) led by biologist J. Craig Venter and the 'open-source' methodologies led by biotechnology Nobel laureate John Sulston. The 'open-source methodologies' arose in biotechnology as an alternative to the patent-and-publish regime in the wake of the explosion in computer technology. Indeed, the tremendous increase in computer technology has generated a corresponding increase in the pace of genomics research. I conclude this paper by arguing that while the patent-and-publish method is a transactional method based on the exchange of extrinsic goods (patents in exchange for research funds), the free and open-source methodology (FLOSS)1 is a transformational method based on a visionary ideal of science, which leads to prioritizing intrinsic goods in scientific research over extrinsic goods. ..."
"Although both aggressive (AGG) and deceitful behaviors (DEC) are symptoms of childhood conduct problems, few studies have examined common vs. specific etiological influences. Early intervention is encouraged for conduct problems and findings from genetically informative studies can suggest whether interventions should focus on conduct problems in general or groupings of conduct problems more specifically. Twin model-fitting analyses were conducted on same and different teacher ratings of AGG and DEC for 872 9-year old male twin pairs. Common genetic influences were found to underlie the susceptibility for both AGG and DEC. The same teacher ratings resulted in somewhat higher heritability estimates than different teacher ratings. Results also indicated stronger environmental effects for DEC as compared with AGG, with a significant shared environmental component for same teachers and a substantial non-shared environmental component for different teachers. Our data suggest that AGG and DEC share risk genes and environmental factors may differentiate these two types of conduct problems. Characterizing these specific environmental factors may be useful when developing interventions. ..."
"This paper examines the operation of power and its consequences arising from the growth of new ethical bureaucracies in universities. We use the UK as a case study to illustrate more general points about the globalised nature and impact of such bureaucratisation. Our focus is on the social sciences as this is where, we argue, the impact is likely to be most marked. The paper is organised in five sections. The first introduces our concerns. Section 2 traces the genealogy of these new regimes of control in the UK. We then problematise the new ethical bureaucracies, making an analysis in terms of the shift in the locus of power away from researchers to becoming centralised in bureaucratic structures. In section 4 we explore some of the ways in which researchers might respond to the changing regimes of ethical control. Finally, we offer considerations of the ways in which ethical governance of research might be differently conducted so as to avoid the adverse consequences of new regimes of control on research practice. Our aim is to provoke debate and thereby contribute to a platform from which to reassert ways to ensure that research is ethical and that do not interfere with the production and consumption of critical social science. ..."
Cronstein, B. N. (2009). "Rheumatoid arthritis: GWAS or TMI?" Genome Med. 1(10): 98.
"ABSTRACT: Genome-wide association studies are the most comprehensive and straightforward approach to teasing out the identity of genetic polymorphisms associated with any given disease or characteristic. With the availability of DNA banks from large cohorts of ethnically matched patients and healthy individuals it is now possible to define even marginal genetic associations between genetic polymorphisms and diseases. As increasing numbers of these studies are carried out and as associations with smaller and smaller risks are identified, there is the growing concern that the findings will be of increasingly marginal value. Thus, the glut of new genetic associations is rapidly overwhelming our interest in the results, a situation that could be described as TMI (too much information). Recent genetic association studies in rheumatoid arthritis suggest that we may be approaching the TMI stage of genome-wide association studies. ..."
"Placental gene therapy might be justifiable when: there is reasonable certainty that the foetus will suffer irreversible and substantial harm without the intervention; the intervention is safe and effective; the risk to the health of the mother is negligible; and the mother can give informed consent to the intervention. ..."
"A selective review of the recent literature on molecular genetic and genomic approaches to the psychoses including the early output from genome-wide association studies and the genomic analysis of DNA structural variation.Susceptibility variants at strong candidate genes have been identified including neuregulin, dysbindin, DISC1 and neurexin 1. The genomics have done much for the psychoses to date and more is anticipated. ..."
"The relationship between clinical research and clinical care is often perceived as unclear, particularly in highly technological subspecialties. This ambiguity is illustrated in cancer genetics where research protocols are frequently used to provide access to procedures that may be offered as a clinical service in other specialties. The project on which this paper is based investigated lay and expert perceptions of the activities which take place within the cancer genetics clinic. Semi-structured interviews were conducted with 40 individuals who are involved in cancer genetics research in the UK, the majority (18 clinical geneticists, 10 genetic counsellors/nurse specialists) of whom also provide a clinical service. Interviewees emphasised the need to differentiate research from clinical care for service users, and provided regulatory, ethical, economic and translational justifications for distinguishing these activities. A number of strategies for differentiating research from clinical care were described by those who work as healthcare professionals, which involved deliberately displacing these activities in time and space. It is argued that by distinguishing research from clinical care clinical researchers are engaging in a form of boundary work which enables them to manage what they experience as a conflict of interest generated by the different roles they occupy within the cancer genetics clinic. Finally, we discuss the implications of these findings for the process of informed consent. ..."
"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. . ..."
Holmes, M. V., S. H. Shah, et al. (2009). "Complex disease genetics: present and future translational applications." Genome Med. 1(11): 104.
"Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers' abilities may increase participants' acceptance of consent for broad research uses of biobank data by a wide range of researchers. ..."
"This paper presents findings from an evaluation of an English initiative to integrate genetics into 'mainstream' clinical provision in the National Health Service. Methods: Qualitative research in 11 case-study sites focusing on attempts by pilots funded by the initiative to embed knowledge and provision within primary care illustrating barriers faced and the ways in which these were surmounted. Results: Lack of intrinsic interest in clinical genetics among primary care staff was compounded by national targets that focused their attention elsewhere and by service structures that rendered genetics a peripheral concern demanding minimal engagement. Established divisions between the commissioning of mainstream and specialist services, along with the pressures of shorter-term targets, impeded ongoing funding. Conclusions: More wide-ranging policy and organizational support is required if the aim of entrenching genetics knowledge and practice across the Health Service is to be realized. ..."
"The current healthcare system in the United States is unsustainable, but any attempts at improvement must be carefully managed to avoid weakening the country's contribution to biomedical science research and the future of genome medicine."
"In this article, a brief overview of the various types of genetic research will be given in order to set the scene for some ethical and practical issues surrounding the research in developing countries that will be discussed subsequently. Case studies that illustrate some of the ethical and practical issues flagged will be given, followed by suggestions on possible ways of tackling some of the challenges in developing country settings. Nevertheless, genetic and genomic research could go a long way in providing knowledge that could be useful in the development of drugs and vaccines for many diseases affecting the developing countries.. ..."
"It can be argued that age-related macular degeneration is one of the best characterized complex trait diseases. Extensive information related to genetic and environmental risk factors exists, and a number of different biological pathways are strongly implicated in its aetiology. Along with recent improvements in high throughput and relatively inexpensive genetic technologies, we are now in a position to consider developing a presymptomatic, personalized approach towards the assessment, management and treatment of this disease. We explore the applicability and challenges of this approach if it is to become commonplace for guiding treatment decisions for individuals with pre-existing disease or for those at high risk of developing it. ..."
Pennisi, E. (2009). "No Genome Left Behind." Science 326(5954): 794-795.
"The Genomes 10K plan, formally announced this week, is short on details: where funding will come from; what sequencing strategy to use; and how to process and make use of the data generated. But supporters are gung ho. ..."
Platt, D. (2009). "When consumers get their genomes." Personalized Medicine 6(6): 669-679.
"Recent findings have highlighted the importance of DARPP-32 (dopamine- and cAMP-regulated phosphoprotein, 32 kDa), a key regulatory molecule in the dopaminergic signalling pathway for dopamine related phenotypes like antisocial-behavior, drug addiction and schizophrenia. This is the first study investigating the role of the DARPP-32 gene for personality. In a sample of n = 838 healthy German Caucasian subjects we found a significant association between rs907094 and ANGER. Carriers of the T-allele showed significantly higher ANGER scores than participants without a T-allele (F(1,837) = 9.52, p = 0.002). In a second step we validated self-report data of ANGER by investigating their relation to structural brain differences in anger-related brain regions using voxel-based morphometry. A negative association between ANGER scores and the volume of the left amygdala could be detected. The present findings yield genetic evidence for the importance of dopaminergic signal transduction for the personality trait of ANGER. In addition volumetric MRI data support the role of the amygdala for the processing of anger. ..."
Ries, N. M., R. Hyde-Lay, et al. (2009). "Willingness to Pay for Genetic Testing: A Study of Attitudes in a Canadian Population." Public Health Genomics 26: 26.
"Background: This article reports results of a 2008 telephone survey of approximately 1,200 residents of the Province of Alberta, Canada. The majority of respondents reside in urban centers, have some post-secondary education, and report annual family income near or above the Canadian average. The goal was to explore attitudes and interest regarding different types of genetic tests. Across all test categories, few respondents expressed willingness to pay more than CAD 500 out of their own pocket. 62% stated that the public health insurance system should pay for genetic tests for manageable conditions and opinion was divided about whether the government should fund tests for serious, unpreventable conditions and tests to inform healthy eating choices. Conclusion: The principal motivator for interest in genetic testing was to learn clinically relevant details to inform health-related decisions. Curiosity about genetic risk had only a modest impact on consumer interest. In general, younger respondents (18-35 years) expressed somewhat greater willingness to pay than older respondents, especially those 65 and older. ..."
"Two new studies report improved statistics to predict whether an individual participated in a genome-wide association study based on aggregate allele or genotype frequency information. They demonstrate that it may be possible to release summary statistics for a subset of genetic markers in a study while maintaining individual privacy. ..."
"This article examines and discusses the ethical, medical and legal considerations that arise from the operation of umbilical cord banks in Mexico. Discussion. A number of experts have stated that the use of umbilical cord goes beyond the mere utilization of human tissues for the purpose of treatment. This tissue is also used in research studies: genetic studies, studies to evaluate the effectiveness of new antibiotics, studies to identify new proteins, etc. Meanwhile, others claim that the law and other norms for the functioning of cord banks are not consistent and are poorly defined. Some of these critics point out that the confidentiality of donor information is handled differently in different places. The fact that private cord banks offer their services as "biological insurance" in order to obtain informed consent by promising the parents that the tissue that will be stored insures the health of their child in the future raises the issue of whether the consent is freely given or given under coercion. Another consideration that must be made in relation to privately owned cord banks has to do with the ownership of the stored umbilical cord. Summary. Conflicts between moral principles and economic interests (non-moral principles) cause dilemmas in the clinical practice of umbilical cord blood storage and use especially in privately owned banks. This article presents a reflection and some of the guidelines that must be followed by umbilical cord banks in order to deal with these conflicts. This reflection is based on the fundamental notions of ethics and public health and seeks to be a contribution towards the improvement of umbilical cord banks' performance..."
"The decoding of the human genome suggests the creation of an impressive array of new diagnostic tests. Nevertheless, a large number of genetic disorders are rare, and required tests are sometimes available only in specialized laboratories. For this reason, many samples must be sent abroad to be tested. However, a comparative analysis shows that most countries have different frameworks governing genetic laboratories and patient rights. The internationalization of genetic services is an undeniable reality, creating important ethical and legal issues for the health professionals required to send samples abroad for genetic analysis. An analysis of these issues, using three major ethical perspectives, principlism, utilitarianism and deontology, demonstrates prima facie evidence of the ethics of the internationalization of genetic services. However, this analysis also raises several issues created by the coexistence of different national frameworks governing genetic laboratory services. ..."
"Clinical hematologists are faced with a growing list of new genetic-based tools for identifying a patient's risk of disease. While many of the disease-specific tests are readily available, validation studies are required. Furthermore, genetic-based tests are being pushed to their technical limits, such as testing a single cell prior to embryo selection and transfer for couples at risk of genetic disease. As a result, misdiagnosis or misinterpretation of the data may result. As new genetic testing opportunities proliferate, the hematologist needs to be aware of the medical and legal issues surrounding their use. Furthermore, the hematologist needs to consider the psychological, ethical and social implications of this new field of genomic-based medicine. ..."
Watanabe, M., T. Ohata, et al. (2009). "Problems in the Regulation of Genetic Tests in Japan: What Can We Learn from Direct-to-Consumer Genetic Tests?" Public Health Genomics 26: 26.
"This article describes the regulatory framework for clinical laboratory tests including genetic tests, and the gaps in regulation, which are particularly highlighted by the appearance of DTC genetic testing. Furthermore the current initiatives taken by different organizations, especially the self-regulatory initiatives by related industries, will be discussed. To conclude the article, recommendations to improve the situation will be made. ..."
Watson, J. (2009). "Living with my personal genome." Personalized Medicine 6(6): 607-607.
"We developed Web-based applications that encourage the exploration of the literature on human genetic associations by using a database that is continuously updated from PubMed. These applications provide user-friendly interfaces for searching summarized information on human genetic associations, using either genes or diseases as the starting point. ..."
Zonno, K. D. and S. F. Terry (2009). "Transparency, openness, and genetic testing." Genet Test Mol Biomarkers. 13(4): 433-4.
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