This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Center News Welcome to Cecilia Guadestegni! Aa scientist with the Italian version
of the NIH in Rome, she will visiting CGREAL from April 7 to May 9, to work on biobanking issues as well as to participate in the ELSI The 2008 Translating ELSI Conference now has 246 registered attendees and 18 pre-conference workshop attendees! Don't forget to register now for the 2008 Translating ELSI Conference!
Opportunities
Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University
Call for Applications - Genomics and Society: Setting the Agendas April 18-19, 2008 Rutgers University
What's The Use of Race? Call for Papers Special Issue: Bioethics - Ethical Implications of Social Determinants of Health Due May 1, 2008 Translating “ELSI”: International Congress on Call for Papers Society for Disability Studies Annual Conference Congress of Qualitative Inquiry: Ethics, Evidence and Social Justice May 14-17, 2008 University of Illinois at Urbana-Champaign Genetics, history and public understanding May 30-31 , 2008 Barcelona, Spain Genotyping and Association Studies: Technologies, Approaches and Applications - June 9-10, 2008 San Francisco, CA Public Health Genomics Institute Course - June 10-12, 2008 Emory University Governing Biobanks – What are the challenges? June 23-26, 2008 Oxford, UK Three Societies 2008 -
Connecting Disciplines July 6-8, 2008 Oxford UK Rocky Mountain Ethics Congress Boulder, Colorado 4S/EASST: Acting with science, technology and medicine Rotterdam, The Netherlands August 20-23, 2008 Proto-Eugenic Thinking before Galton - Washington DC Making Race, Making Health: Historical Approaches to Race, Medicine, and Public Health November 13-15, 2008 Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission. ResourcesCenters for Excellence in ELSI Research (CEER)
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Genetics in the News
Better Regulation Of Home Genetic Tests Needed, Researchers Urge (Science Daily) "Better regulation is urgently needed for genetic tests, particularly those marketed directly to the public ..."[Related: Lawless Gene-Testing Industry Needs a Sheriff (Wired) "Think twice before you act on the recommendations of a genetic test. ..."]
Marketing of unproven genetic tests a threat to public health "Government regulatory action by FDA, FTC key to ensuring future of personalized medicine..." [Related: Genetic Testing Gets Personal (Washington Post) "This is the world of direct-to-consumer genetic testing, a peculiar mix of modern science, old-fashioned narcissism and innovative entrepreneurialism, all made possible by the government-sponsored Human Genome Project. ..." DNA testing firms eye consumers (BBC ) "New DNA testing companies are arriving on the market, offering greater insight into our genes than ever before. ..."]
Bipolar gene test stirs self-help debate "Some argue at-home psychiatric testing has no oversight ..." [Related: DNA tests a mouse click away (The Star) "Home genetics tests are a growing field that can help determine cancer risks, baby gender and even how humans metabolize caffeine ..."]
Toward the ethical treatment of whole genome research participants "Caulfield and his colleagues argue that the ability to sequence a person's entire genome has created a whole new set of moral challenges that standard research ethics guidelines were not designed to solve. ..."
Choosing a deaf baby is criminal (London Times) "Mr Lichy opposes a new law that will forbid people undergoing IVF from deliberately choosing a deaf child. Why? Because he believes that deafness is not a disability. ..."
Embryology research is controversial... (London Times) "But would you refuse the treatment? ..."[Related: The Ethics of Embryology "There are no easy answers to the questions raised by recent medical research ..."UCLA researchers examine human embryonic stem cell genome "Stem cell researchers from UCLA used a high resolution technique to examine the genome, or total DNA content, of a pair of human embryonic stem cell lines ..."]
Knowing doctor's financial interests doesn't deter clinical trial participants
"A patient's willingness to participate in a clinical trial may be unaffected by the disclosure of a researcher's financial interests in the study, unless the amount of money a researcher stands to earn depends on the results of the trial ..."
Answer to troublesome question of why some genetic assoc. studies have failed replication attempts "Paper resulted from identification of childhood obesity gene and carries implications for fundamental study design and analysis ..."
First study hints at insights to come from genes unique to humans "Scientists currently estimate that there may be as few as 50 to 100 that have no counterparts in other species. Despite the distinctive contributions these genes likely make to our species, little is known about the roles they play. ..."
Deadly genetic disease prevented before birth in zebrafish "Finding offers potential for helping humans ..."
Scientists launch human oral microbiome database "Tool offers the most complete resource on microbiology of the mouth ..."
Researchers at Odds Over Tuskegee Study "Two separate studies took opposing sides on whether the Tuskegee experiment remains a significant factor in turning Blacks away from clinical trials at a greater rate than Whites. ..."
Slow catch-up time just understanding what genetic screening can do (Daily News) "This is largely a DIY marketplace, and patients intent on detecting cracks and flaws in their personal genetic foundation and acting to patch them up are finding they re pretty much on their own. ..."
Lawyers Fight DNA Samples Gained on Sly (New York Times) "The practice, known among law enforcement officials as surreptitious sampling, is growing in popularity even as defense lawyers and civil liberties advocates argue that it violates a constitutional right to privacy. ..."
Genetics May Bring New Life to Failed Drugs (WSJ) "The discovery of new links between genes and diseases can help not only to design new treatments, but to salvage drugs that are shelved when they come up short in clinical trials. "
Umbilical cord blood cell therapy may reduce signs and symptoms of Alzheimers disease (Think Gene) "Targeted immune suppression using human umbilical cord blood cells may improve the pathology associated with Alzheimer s disease, a new study in a mouse model of this currently untreatable neurodegenerative condition reports. ..."
Social Networking Hits the Genome (Technology Review) "You will soon be able to compare your DNA with that of friends. ..."
When Anti-Aging Therapies and Youth Come Together - US News and World Report "Yearning for everlasting youth may amount to a "new anorexia," ..."
Related: Reflections: Mine Is Longer than Yours (The New Yorker)"Extending your own life expectancy is the most selfish motive imaginable for doing anything. Do it, by all means. ..."]
Cancer research Web exploits human Genome map (Computerworld ) "Research grid could lead to improved drug research and safer clinical trials for cancer patients -- and soon for other diseases ..."
Ancestry Helps Map Disease Genes "Mapping by admixture linkage disequilibrium (MALD) is a powerful approach for identifying regions of the genome that contain genes associated with disease. ..."
Cracking the Code (Reform Judaism Magazine) "DNA detectives reveal secrets about the Jewish past and imagine the future. ..."
New study urges caution over revolutionary gene treatment "A US research team on Wednesday urged strong caution over a prototype gene treatment that has generated billions of dollars in investment as a hoped-for cure for cancer, diabetes and other diseases. ..."
Genes now linked to ... diabetes ("Analysis Identifies Potential New Therapeutic Targets; Suggests Possible Ties to Prostate Cancer ..."), weight (a woman's waistline may have more to do with the genes of her parents ..."), alcoholism (Reshaping of the DNA scaffolding may play a major role in the alcohol withdrawal symptoms. ..."), schizophrenia ("People with schizophrenia have high rates of rare genetic mutations..."), stress ("Inherited variations in the amount of an innate anxiety-reducing molecule help explain why some people can withstand stress better than others ..."), and smoking ( "Studies show double whammy' link to addiction and cancer ...").
Genetics in the Literature
Office for Human Research Protections (2008). International Compilation of Human Research Protections"This Compilation lists the approximately 900 laws, regulations, and guidelines that govern human subjects research in 84 countries, as well as from a number of international and regional organizations. This year’s Compilation features a new section on research standards for Embryos, Stem Cells, and Cloning. ..."
Domestic Policy Council (2008). Advancing Stem Cell Science without Destroying Human Life "A White House Domestic Policy Council report promoting alternative stem cell research methods. ..."
Alberts, B. (2008). "Shortcuts to Medical Progress?" Science 319(5871): 1733-.
"Emerging demands can only be met if biobanks cooperate at the transnational or even global scale. Establishment of common standards and strategies to cope with the heterogeneous legal and ethical landscape in different countries are seen as major challenges for biobank networks. The Central Research Infrastructure for Molecular Pathology (CRIP), the concept for a pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI), and the Organization for Economic Co-operation and Development (OECD) global Biological Resources Centres network are examples for transnational, European and global biobank networks that are described in this article. ..."
"In brief, the ESHG recommends limiting the breadth of the claims in genetic patents and, more practically, to reduce the number of patents by limiting the patentable subject matter, thereby improving the quality of the patents that will eventually be granted. The problem of licensing should also be addressed. Practically, this means supporting the Organisation for Economic Co-operation and Development guidelines, which prescribe that licenses should be non-exclusive and easily obtainable, both in practical and in financial terms. To promote this, the practical exploration of alternative models for licensing, like patent pools and clearinghouses, is a prerequisite. . ..."
"We propose four components necessary to support family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening: (1) accurate and understandable information; (2) formal and informal support; (3) active surveillance; and (4) general and targeted interventions. We argue that no condition is "untreatable" and that a well-designed program of prevention and support has the potential to maximize benefit and minimize harm. . ..."
Biondi, G. and O. Rickards (2007). "Race: the extinction of a paradigm." Ann Hum Biol 34(6): 588-92.
"This paper explores the ethical issues of non-disclosure of genetic inheritance by contrasting two principle models used to articulate the problem--liberal and communitarian ethical models. It argues that whilst the latter provides a more constructive avenue to providing an ethics for donation than the competing and contradictory positions represented in a liberal rights approach, it raises issues of ethical judgement and authority that remain problematic.. ..."
"In the genetic counseling setting, the health care provider can be challenged by opposing duties to members of the same family: protecting the privacy of the patient identified with a gene mutation and the ethical obligation to warn at-risk relatives. In a situation of nondisclosure between members of a family with a known disease-predisposing mutation, this type of dilemma can present in acute form for the provider who cares for different members of the family. This can hinder effective medical decision making. To minimize this effect, we recommend detailed pretest genetic counseling steps to empower the patient to communicate with their at-risk relatives their intent to pursue testing and willingness to share information. In addition, post-test counseling should reiterate the implications of a positive result for at-risk relatives and conclude with a written summary that patients can share with their family. ..."
"Disclosure of information regarding Alpha-1 and CF testing appears to be potentially acceptable to patients and unlikely to prevent clinicians from conducting useful diagnostic procedures. This study is a step in alleviating concerns about raising issues related to genetic testing for Alpha-1 and CF in chronic obstructive pulmonary disease patients during the informed consent process. ..."
"The article reflects on the social complexities of genetic technologies and biomedical prenatal practices. The section aims to discusses on how the field of reproductive genetics can profit from the position of feminists and how gender, the body and ethics go together. It demonstrates how the combination of prenatal genetics, politics and gender develops threats to female embodiment. It also focuses on the concept of new reproductive technologies, also known as prenatal technologies. The study determines that prenatal genetic technologies are gender biased, thus needs re-visioning. ..."
Feinberg, A. P. (2008). "Epigenetics at the Epicenter of Modern Medicine." JAMA 299(11): 1345-1350.
"Thus, including epigenetics into epidemiologic studies of human disease may help explain the relationship between the genome and the environment and may provide new clues to modifying these effects in disease prevention and therapy. ..."
Fenton, E. (2008). "Genetic enhancement--a threat to human rights?" Bioethics 22(1): 1-7.
"I argue that Annas' appeal to human rights ultimately falls flat, and so provides no good reason to object to genetic technology. Moreover, this argument is an example of the broader problem of appealing to human rights as a panacea for ethical problems. Human rights, it is often claimed, are 'trumps': if it can be shown that a proposed technology violates human rights, then it must be cast aside. But human rights are neither a panacea for ethical problems nor a trump card. If they are drafted into the service of an argument, it must be shown that an actual human rights violation will occur. Annas' argument against genetic technology fails to do just this. I shall conclude that his appeal to human rights adds little to the debate over the ethical questions raised by genetic technology. ..."
"Consumers face an array of providers with conflicting information on the usefulness of banked cord blood. We analyse the growing cord blood banking industry in the UK and the potential impact of Virgin Health Bank’s novel model that provides blood for both personal use and public banks. ..."
"The purpose of this analysis was to examine parents' (N = 142) concerns about issues (i.e., privacy of information, insurance, healthcare costs, employment, school) related to their children's genetic conditions. Parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues. . ..."
" By understanding and applying fundamental clinical principles relating to the emerging fields of molecular medicine, nutrigenomics and human exposure assessment, doctors will be empowered to address causality of affliction when possible and achieve sustained reprieve for many suffering patients. ..."
"This study assesses the information provision and access requirements that are in place for genetic tests that are being advertised DTC over the Internet. Results showed that companies offering risk assessment and diagnostic testing were most likely to require that testing be mediated by a clinician, and to recommend physician-arranged counseling. Companies offering enhancement testing were less likely to require physician mediation of services and more likely to provide long-distance genetic counseling. DTC advertisements often provided information on disease etiology; this was most common in the case of multifactorial diseases. The majority of companies cited outside sources to support the validity of claims about clinical utility of the tests being advertised; companies offering risk assessment tests most frequently cited all information sources. DTC advertising for genetic tests that lack independent professional oversight raises troubling questions about appropriate use and interpretation of these tests by consumers and carries implications for the standards of patient care. These implications are discussed in the context of a public healthcare system. ..."
"In this chapter, we discuss several ethical, legal, and social issues that have been raised surrounding biobanks, including recruitment of vulnerable populations, informed consent, data disclosure to participants, intellectual property, and privacy and security. Throughout the chapter, we will highlight experiences of national biobanks in Iceland, the U.K., Sweden, and Estonia, and the proposal for a U.S. population cohort study. The dependence on public participation requires clear and transparent policies developed through inclusive processes. ..."
"The objective of this literature review is to analyze the implications of using genetically modified organisms (GMOs) as well as international and European position regarding such organisms. Suggested steps to tackle the challenge of developing and managing biotechnology for the benefit of public health and the environment are presented. ..."
"Here, we provide a review of the data from reported DNA vaccine clinical studies with an emphasis on the ability of DNA vaccines to elicit antigen-specific, cell-mediated and antibody responses in humans. The majority of these trials are designed to test candidate vaccines against several major human pathogens and the remaining studies tested the immunogenicity of therapeutic vaccines against cancer. ..."
Lunshof, J. E., R. Chadwick, et al. (2008). "From genetic privacy to open consent." Nat Rev Genet.
"Here, we show the feasibility of the co-development of scientific innovation and ethics, using the open-consent framework that was implemented in the Personal Genome Project as an example. ..."
"One of the central arguments given to resist testing currently healthy, asymptomatic children for adult-onset diseases is that they may be psychologically harmed by the knowledge gained from such tests. In this discussion I examine two of the most serious arguments: children who are tested may face limited futures, and that testing may result in damage to the child's self esteem (where the test result returns a positive diagnosis). I claim that these arguments do not stand up to critical evaluation. In conclusion, whilst I do not suggest that all at-risk children should be tested for adult-onset diseases we ought to listen carefully to some parental requests for such testing because the putative psychological harms may not be as significant or likely as initially thought. This is because parents generally have the best interests of their children at heart and if they are properly supported and educated about predictive genetic testing and the possible consequences, then the risk of psychological harms occurring may be ameliorated. ..."
Mesoudi, A. and P. Danielson (2008). "Ethics, evolution and culture." Theory Biosci.
"Here we suggest that a science of morality/ethics can benefit from adopting a cultural evolution or gene-culture coevolution approach, which treats culture as a second, separate evolutionary system that acts in parallel to biological/genetic evolution. This cultural evolution approach brings with it a set of established theoretical concepts (e.g. different cultural transmission mechanisms) and empirical methods (e.g. evolutionary game theory) that can significantly improve our understanding of human morality. ..."
"In this article we construct a taxonomy of types of "experiments of concern" in the biological sciences, and thereby map the terrain of ethical risk. We then provide a series of analyses of the ethical problems and considerations at issue in the dual-use dilemma, including the impermissibility of certain kinds of research and possible restrictions on dissemination of research results given the risks to health and security. Finally, we explore the main available institutional responses to some of the specific ethical problems posed by the dual-use dilemma in the biological sciences. ..."
"In this paper, we briefly outline the existing state of IRB protections for prisoners selected for research, and focus on the effectiveness of prisoner representatives in this process. We suggest that there are weaknesses within the existing system such that representation may provide little more than ideological legitimation for the process. Moreover, we question whether "being heard" is enough. We suggest that research needs to be conducted to more extensively map the scope of this issue and to raise some critical questions in order to improve the effectiveness of the ethical considerations for research on prisoners, as well as the RB process and any post-IRB oversight, in protecting this vulnerable population. ..."
Morton, N. E. (2008). "Into the Post-HapMap Era." Adv Genet 60: 727-42.
"The month of June 2007 saw advances in genome-wide association scans (GWAS) for several diseases. Many questions remain to be answered if genetic epidemiology is to continue the significant contribution to medicine that its definition promises and its history illustrates. ..."
"This article describes the design, interpretation, application, and limitations of GWA studies for clinicians and scientists for whom this evolving science may have great relevance. ..."
"This article presents the findings of a qualitative study of multiracial individuals' understanding of identity, race and human genetic variation. The debate regarding the correlation between race, genetics and disease has expanded, but limited empirical data has been collected regarding the lay public's perspective. Participants in this study explore their identity and its relationships to their health care interactions. Participants also share their views on race-based therapeutics, health disparities and the connections between race, ancestry and genetics. Their voices highlight the limitations of racial categories in describing differences within our increasingly diverse communities. The genomic era will be a pivotal period in challenging current understandings and uses of racial categories in health. ..."
"Here we present a review of the epigenetic theory of complex disease and an evaluation of current epigenetic therapies, as well as predictions of the future directions in this expanding field. ..."
"The article reports on the efforts of environmental health scientists in implementing molecular technologies in their researches. The section determines human genetic variation in susceptibility to untoward outcomes following environmental exposures. It also identifies individuals who have maintained DNA damage due to exposure to chemicals present in the environment. According to the report, most environmental health scientists are utilizing practices to enhance public health, through innovations in biomedical practice and refinement of environmental health risk evaluation and regulation. ..."
"A new perspective for personalized care which genomics and bioinformatics cooperatively open was described, with emphasis on promising possibilities which "genome/omics-based personalized care" is thought to bring about. In doing so, we took it into consideration that, along the rapid progress of the genome/omics and bioinformatics, the contents of "genome/omics-based personalized care" have evolved, mainly through three generations.. ..."
"This article critically evaluates bettering human life. Because this involves lives that do not exist yet, the article investigates human eugenics and enhancement through the social prism of ‘the imaginary’ (defined ‘as a set of assumptions and concepts for thinking and speaking about human enhancement and its future direction’) [1]. “Moral imagination in contemporary fiction and the history of old eugenics”, introduces moral images in history of eugenics and demonstrates how examples fall foul of the problem. “The new (liberal) eugenics and the moral image of therapy” examines progress in contemporary debates, the move from authoritarian to non-authoritarian eugenics (human enhancement), and how, to some extent, this has solved the problem of difference, through liberal defence of personal choice. “The heart of the eugenic issue” suggests that personal choice in liberal non-authoritarian eugenics is not immune to basic drive behind all eugenic arguments; desire as lack which is expressed as the continual dissatisfaction of not having our future expectations met. ..."
"Drawing upon a concept of ‘critical bioethics’ [7] this paper takes a species-broad approach to the social and ethical aspects of enhancement. Critical Bioethics aims to foreground interdisciplinarity, socio-political dimensions, as well as reflexivity to what becomes bioethical subject matter. This paper focuses upon the latter component and uses the example of animal enhancement as a way to think about both enhancement generally, and bioethics. It constructs several arguments for including animal enhancement as a part of enhancement debates, and considers some connections between human and animal enhancement. The paper concludes in a plea for an ‘enhancement’ to our critical abilities to examine some of the underlying social, moral and ethical assumptions bound up in varied anticipated ‘enhanced’ futures. ..."
"Basic scientists should probably focus their attention on medical innovation. Velculescu believes that most research scientists probably do not know enough about health policy to play a major role in its development. However, scientists have an important part to play--indeed, an obligation to explain their work and its relevance to legislators and to the general public--because it is scientists who can best alert policymakers to what is on the health care horizon. ..."
"There is evidence for widespread disbelief in the genetics of suicide, despite recent research progress in this area and convergent evidence supporting a role for genetic factors. This study analyzed the beliefs held in 8 samples (total N = 1224) of various types (psychology, medical, and various undergraduates, psychology graduates, and the general population) from 6 countries located on 3 continents (Austria, Canada, Malaysia, Romania, United Kingdom, and the USA). Endorsement rates for the existence of genetic risk factors for suicide ranged from 26% and 30% (Austrian psychology undergraduates and general population) to around 50% (psychology undergraduates in the USA and United Kingdom). In the 8 samples, respondents' sex, age, religiosity, political orientation, and other demographic variables were, for the most part, unrelated, but overall knowledge about suicide throughout was related positively to endorsement rates. Consistent with previous research, across a considerable variety of sample types and cultural settings there was no evidence for a clear majority believing in genetic bases for suicide. ..."
"This article argues that totipotent character of human totipotent cells--defined as the capacity of a cell "to differentiate into all somatic lineages (ectoderm, mesoderm, endoderm), the germ line and extra-embryonic tissues such as the placenta"--is not a sufficient reason to exclude their patentability. Therefore, this article suggests that, when evaluating patentability of human totipotent cells, they should be further evaluated according to their location and their method of derivation . ..."
"There is increasing awareness of the role of genetics as a factor that can dramatically alter susceptibility to all disease, especially environmentally induced chronic disease, such as cancer, asthma, diabetes, cardiovascular disease, and neurodegenerative disorders. In some cases, a genetic factor influences disease susceptibility in a small fraction of the population because it occurs at a low frequency or involves a relatively low-incidence disease; however, in other cases, a genetic factor increases susceptibility in a large number of individuals and involves a disease that occurs at high incidence, creating a large public health burden. ..."
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