This Week in CGREAL This Week in CGREAL Home * Genetics in the News * Genetics in the Literature * Archive
Genetics in the News
RFI: Priorities in basic Behavioral and Social Sciences Research " The National Institutes of Health (NIH) Office of Behavioral and Social Sciences Research (OBSSR) and Office of Portfolio Analysis and Strategic Initiatives (OPASI) are seeking input from the scientific community, health professionals, patient advocates, and the general public about emerging priorities in basic Behavioral and Social Sciences Research (bBSSR) that may offer potential for improving and accelerating health research and its impact on the health of the Nation. ..."
Welcome to the Future (Conde Nast Portfolio) "With a little help from Google, secretive Silicon Valley startup 23andMe is betting you ll want to Web-surf your own DNA. But is the science ready? ..." [Related: Will 23andMe and Navigenics lock up your genome and charge you for the key?]
Race and Intelligence: Is There a Link? NPR "Farai Chideya talks about why the conversation of race and intelligence persists with Phil Rushton ..." [Related: The Eugenics Temptation (Washington Post) "When it comes to eugenics, they face not only a tension but a choice -- and they should choose human equality over the pursuit of human perfection. ..."]
Scientists Using Maps Of Genes for Therapies Are Wary of Profiling (Wall Street Journal) "As researchers delve deeper into the biochemistry of human variation, however, we lack the vocabulary to talk about these distinctions clearly. ..."
Medicine that s only skin deep (Times ) "Should treatments be tailored to race? Simon Crompton reports on a controversial new trend curing by colour ..."
Consortium publishes Phase II map of human genetic variation "The second-generation haplotype map, or Phase II HapMap, contains more than 3.1 million genetic variants, called single nucleotide polymorphisms (SNPs) three times more than the approximately 1 million SNPs contained in the initial version. ..."
Researchers underscore limitations of genetic ancestry tests "Although many people rely on commercially available genetic tests for insights into their ancestry, the tests have significant limitations ..."[Related: Genetic ancestral testing cannot deliver on its promise, study warns "The technology is flawed and could spawn unwelcome societal consequences ..."]
DNAPrint Genomics and Bioserve Form Strategic Alliance to Provide Clinical Patient Samples Tagged With Genetic Ancestry Data "Clinical DNA samples for the first time will include genetic ancestry data for each sample. ..." [Related:
GeneTree " allows users to submit their own DNA and to collaborate with others using social networking tools. ..."DNA Direct Now Offers Genetic Genealogy Testing (The Genetic Genealogist) "DNA Direct, a direct-to-consumer genetic testing company, has just announced the addition of Ancestry and Ethnicity DNA testing to their suite of products. ..."]
Evolution: Live fast, love hard, die young (Economist) "But one striking piece of inequality has been conveniently overlooked: lifespan. ..." [Related: Genes that both extend life and protect against cancer identified "These findings greatly strengthen the view that the controls of lifespan and cancer have deep, common roots. ..."A longer-living, healthier mouse that could hold clues to human aging "The research adds to a growing body of work showing the importance of insulin signalling pathways as an ageing mechanism in mammals and potentially humans. ..."]
His daughter's DNA (Nature News)"Despite a training in clinical genetics, Hugh Rienhoff didn't know what was wrong with his daughter. So he set about finding out. ..."
Missing the mark (Nature News) "Genetic tests to detect cancer are feasible. But with researchers drowning in a sea of biomarkers and little financial incentive to get the tests on the shelves, the idea is floundering. ..." [Related: Cancer and Your Genes: Medicare and Genetic Testing for Cancer Risk "The letter summarizes a number of proposed changes to this policy which are likely to go into effect beginning Nov. 1. ...]
So similar, yet so different (Nature News) "Tiny pieces of the genome can already explain many human characteristics.. ..."
Genetic testing raises bias worries (San Jose Mercury News) "24% of 1,199 adults surveyed would trust insurers to see their genetic test results and 16 % would entrust that information to employers. ..."
Cheap, Detailed Genetic Testing Soon May Be Ready for Market (Bloomberg)
"Techniques to analyze a person's complete DNA for as little as $300 in material costs may be ready within months for research purposes, leading to routine tests in the marketplace, scientists said. ..."
U.S. Unveils Database of Genetic, Clinical Research - Yahoo! News "One of the largest collections of genetic and clinical data available free to researchers worldwide has been launched by the U.S. National Institutes of Health. ..."
Looking for Ms or Mr Gene Right: Premarital Genetic Screening "Should your choice of spouse be left solely to your heart, or should the choice incorporate some genetic fitness phase? ..."
Genes may make some people more motivated to eat, perhaps overeat "Obesity researchers find clues to individual risk factors;gene studies could lead to better, tailored treatment ..." [Related: Genetic variation implicated in Pima obesity ..." Researchers find disease genes hidden in discarded data "Previously hidden obesity-related genes have been uncovered from old experiments by researchers ..."]
Public not so sure 'personalized medicine'
Autism Consortium releases data on genes involved in autism to researchers worldwide "The Autism Consortium has completed the first genome scan for Autism Spectrum Disorders (ASD) and has released the reference data set to a database that autism researchers around the world can use. ..."
Largest ever Alzheimer's gene study underway "The team has received £1.3 million from the Wellcome Trust to scan the entire human genome in search of the genes that predispose people to or protect them from developing the disease. ..."
deCODE launches deCODE MI for genetic risk factors for early onset heart attack "deCODE genetics in Iceland has announced the launch of deCODE MI(TM), a reference laboratory test for variations in the genome (called SNPs) that the company has associated with increased risk of myocardial infarction, or heart attack. ..."
Genetics in the Literature
Entine, J. (2007). Abraham's Children: Race, Identity, and the DNA of the Chosen People Grand Central Publishing
"Could our sense of who we are really turn on a sliver of DNA? In our multiethnic world, questions of individual identity are becoming increasingly unclear. Entine examines the profound human implications of the Age of Genetics while illuminating one of today's most controversial topics: the connection between genetics and who we are, and specifically the question "Who is a Jew?" ..."
Harris, J. (2007). Enhancing Evolution: The Ethical Case for Making Better People, Princeton University Press
"Human enhancement, Harris argues, is a good thing--good morally, good for individuals, good as social policy, and good for a genetic heritage that needs serious improvement. Enhancing Evolution defends biotechnological interventions that could allow us to live longer, healthier, and even happier lives by, for example, providing us with immunity from cancer and HIV/AIDS. But the book advocates far more than therapies designed to free us from sickness and disability. Harris champions the possibility of influencing the very course of evolution to give us increased mental and physical powers--from reasoning, concentration, and memory to strength, stamina, and reaction speed. Indeed, he supports enhancing ourselves in almost any way we desire. And it's not only morally defensible to enhance ourselves, Harris says. In some cases, it's morally obligatory. ..."
(2007). "Do-it-yourself science." Nature 449(7164): 755-756.
"How much involvement can patient advocates have in genetics? ..."
"This paper reviews the currently rapid changes in research ethics governance affecting many kinds of social research. Arguments for and against single discipline and multidisciplinary research ethics committees will be considered, with examples of how medical and social research ethics can inform one another. We conclude that the use of multidisciplinary research ethics committees, guidance and governance can be an effective and necessary part of social research methodology. ..."
"The article comments on the article by Klaus MÃkelÃ's essay on ethical control of social research. There is a growing problem in social science and in addiction research. MÃkelÃ's essay rises the concern to provide a balance between the needs of the society and the rights of research participants to be protected from unethical data collection. ..."
Barnett, J., H. Cooper, et al. (2007). "Belief in Public Efficacy, Trust, and Attitudes Toward Modern Genetic Science." Risk Anal 27(4): 921-933.
"This article uses the concept of public efficacy-the extent to which people believe that the public might be able to affect the course of decision making-to explore differences in trust, attentiveness, and attitudes toward modern genetic science. t. ..."
"The paper shows, on the basis of longitudinal analysis of the British press, that public opinion of genetic research and biotechnology varies over two long-term waves: from 1946 to 1972 and from 1973 to the 2000s. s. ..."
"This research raises the question of whether testimony regarding a defendants genotype, exposure to child maltreatment, and experience of unusual stress is appropriate to present during the guilt or penalty phases of criminal trials, especially when capital punishment is a consideration. The authors present their experience in genotyping criminal defendants and presenting genetic information at criminal trials. ..."
"The purpose of this study was to describe the concerns and experiences of GD in the HD community. We describe a process of engagement with GD in which individuals formed meaningful interpretations of GD and personalized its risk and consequences in their lives. ..."
"As the controversial discourse in science and health politics shows, the integration of genomics into public health research, policy and practice is one of the major challenges that our health-care system is currently facing. ..."
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Brenner, S. E. (2007). "Common sense for our genomes." Nature 449(7164): 783-784
Bruce, D. M. (2006). "Moral and ethical issues in gene therapy." Hum Reprod Genet Ethics 12(1): 16-23.
"Overall, institutional academicindustry relationships are highly prevalent and underscore the need for their active disclosure and management. ..."
"This article considers the impact of recent developments within the social and natural sciences on notions of race. The Human Genome Project has generated a range of debates about what it is to be human, the genetic relations between human beings and other animals and about the connections between disease and genetic populations. These debates have not been confined to geneticists and other science professionals but have flowed into wider debates about social policy and governance in which race concepts have been re-invigorated through their association with genomically based claims about human populations. The linking of genetics and genealogy has also often served to reinforce popular notions of ancestry, descent and belonging, resulting in a view of history based on a form of 'genetic reductionism'. ..."
"Investigated genetic explanations for perceived gender differences in nurturance, a gender intensified prescriptive trait, compared to other gendered traits. Based on a nationally representative telephone survey of Black and White Americans ( N = 1200), we found perceived gender differences in nurturance were more often attributed to genetics than perceived gender differences math ability or violence. Men were more likely than women to use genetics to explain perceived gender differences in nurturance, but not math or violence. Finally, respondents viewed perceived gender differences as more strongly genetic than individual differences for nurturance, but not math and violence, suggesting such beliefs have ideological roots. We discuss the potential of genetic explanations to reinforce stereotypes and to justify the social hierarchy. ..."
Crawley, L. (2007). "The paradox of race in the Bidil debate." J Natl Med Assoc 99(7): 821-2.
"Patterns of research governance are changing rapidly in the field of social research. In current debates about these changes one issue of particular concern is the impact that new patterns of research governance will have on the quality of the data collected. The optimistic scenario on this issue is that more ethical research practice will lead to better quality data, but a more pessimistic scenario exists in which the unintended outcome is poorer quality data. Drawing on material from a study of researchers experiences of dealing with the process of gaining informed consent from research participants, this article identifies the various ways in which the researchers position themselves in relation to the competing optimistic and pessimistic scenarios. It concludes by seeking to develop a synthesis of the two positions in which ethical research practice is treated neither as an automatic guarantee of, nor as an inevitable obstacle to, the collection of good quality data. ..."
"The quest for a "preterm birth gene" to explain racial differences is now under way. Scores of papers linking polymorphisms to preterm birth have appeared in the past few years. Is this strategy likely to reduce racial disparities? We reviewed broad epidemiological patterns that call this approach into question. Overall patterns of racial disparities in mortality and secular changes in rates of prematurity as well as birth-weight patterns in infants of African immigrant populations contradict the genetic theory of race and point toward social mechanisms. We postulate that a causal link to class disparities in health exists. ..."
"This study examined how the use of qualifying language in direct-to-consumer (DTC) pharmaceutical advertising affects consumers' perceptions of drug appeal, anticipated pleasantness of drug usage, and the expected incidence of side-effect occurrence. The design manipulated the number of side effects associated with drug use and the type of qualifying language used to describe the side effects. The results indicate that qualifying language has a profound effect on drug perceptions, especially when used in combination. Drug appeal and the anticipated drug-using experience almost always were more positive in the presence of qualifying language. Qualifying language appears to exert its influence by causing individuals to reduce their estimate of the likelihood of experiencing individual side effects. ..."
Dollery, C. T. "Beyond Genomics." Clin Pharmacol Ther 82(4): 366-370.
"By refocusing marketing strategy on racially designated populations, the industry has gathered support for medicines that were previously racially neutral. And this strategy has in turn inspired strange bedfellow support from clinicians who claim selective advantage for their patients from such racialized medicine. There has been a parallel development in forensic science. There are new claims that DNA analysis of crime scene data will assist criminal investigations by narrowing the search for suspects along racial lines. Because these tests are privately conducted, it is not possible for critics to assess the sampling procedure or the overall methodology that is used in categorizing human populations by race. Nonetheless, these claims dovetail with those in pharmacogenomics that assert the importance of patterns in the DNA for predicting ethnic and racial membership. In sum, these developments are ushering in an era of the molecular reinscription of race in the biological sciences. ..."
"This article discusses ways of eliminating bias and maintaining ethical safeguards when designing and conducting research on people with disabilities. Participatory action research, which engages those studied in the design and conduct of research, is discussed as a model, as is the use of qualitative methods. Recent methodological innovations in survey research with deal" populations are also described and illustrated. ..."
Edwards, R. G. (2007). "A burgeoning science of embryological genetics demands a modern ethics." Reprod Biomed Online 15 Suppl 1: 34-40.
"This brief article discusses the nature of recent scientific advances in reproductive biomedicine and genetics, their moral implications and their effects on society. The ethical and legal aspects of these items have led to intense debates on their rights and wrongs. The future may have even more bizarre possibilities such as producing medicines in cow's milk or trees and delaying death for many years. ..."
Emery, J., K. Barlow-Stewart, et al. (2007). "Genetics and preventive health care." Aust Fam Physician 36(10): 808-11.
"General practitioners can play an important role in the early diagnosis of these conditions and subsequent screening of at risk relatives. These conditions highlight the potential for genetic medicine to be applied to support tailored disease prevention in general practice. ..."
"What do you do about protecting human subjects when no IRB rules apply? In this case the "author" received no funding and had no institutional affiliation when he interviewed volunteers and residents of a Red Cross shelter in which he worked. Having signed a confidentiality agreement with the Red Cross the information that he could not reveal directly was clear, but what rules apply to use of information that informants provided that violated their commitment to the same confidentiality agreement? Is any research possible under these conditions? Would the absence of research serve the public interest?Should the "author" as a former Milgram subject feel especially sensitive to the predicament of informants? ..."
Fullwiley, D. (2007). "Race and Genetics: Attempts to Define the Relationship." Biosocieties 2: 221-237.
"In this article Gibel Azoulay critiques the tenacity of the correlation between race as a socio-political notion and as a biological entity in academic circles in general and medical research in particular. Legacies of nineteenth-century scientific racism percolate into the public sphere, facilitating a uniquely US American cultural consensus that imagines and markets external physiological features as gross criteria for making distinctions, highlighting the medicalization of race in pharmaceutical, medical and genetic research. ..."
"By examining course-offerings at LGU5 through the 20th century, we demonstrate that eugenics courses were available at prominent US research institutions not only prior to World War I, but also after the end of World War II, when eugenics was considered bad and inappropriate science. ..."
Goddard, K. A. B., C. Moore, et al. (2007). "Awareness and use of direct-to-consumer
nutrigenomic tests, United States, 2006." Genetics in Medicine 9(8): 510-517.
Gollogly, L. Ethical approval for operational research, World Health Organization.
"The article presents the author's views on ethical guidelines for the operational research in the area of public health intervention. Nowadays, authors are not seeking ethical approval for their research. According to the author, recently researcher Manica Balasegaram and colleagues did not take approval from ethical committee for their research in the Republic of the Congo. The author views that they should have taken permission from the Ministry of Health for publication of their research.
" We argue that parents generate a parallel construct whereby genetic inheritance is seen to be simultaneously irrelevant (to the constitution of the family), and yet at the same time relevant (in highly bounded domains, for example related to medically specified conditions). We analyse the ambiguities of interpreting this construct as one reflecting a separation of procreation from the process of reproduction, and reflect on the implications for information-sharing. ..."
Hale, P. J. (2006). "The search for purpose in a post-Darwinian universe: George Bernard Shaw, 'creative evolution', and Shavian eugenics: 'The dark side of the force'." Hist Philos Life Sci 28(2): 191-213.
"The very public debate between Shaw and Wells, which continued to concern Huxley and Haldane, shows that public concern over the moral implications of Darwinism has a long history. Taking into account the opinions of John Maynard Smith on this matter, I suggest that a consideration of Shaw in this context can give us an understanding of the historical popularity of vitalist teleology as well as of the persistent ambivalence to the non-normative character of Darwinism. ..."
"After a discussion of the problem, we analyse the word 'risk', as both noun and verb, with recourse to three corpora containing over a hundred million contemporary English words. We examine whether or not the meaning of 'risk' is stable and consistent across a variety of social contexts to test the commonplace view that 'risk' is at times manipulated in ideological ways. Data from the corpora, and the methods of corpus linguistics, therefore suggest ways of reconsidering claims about the meaning(s) of 'risk'. ..."
" Situating the rhetoric of race in genomics research within a larger socio-political context, Happe further argues that the use of race in genomics research is an instantiation of what race theorists Michael Omi and Howard Winant call a racial project defined as simultaneously an interpretation, representation, or explanation of racial dynamics, and an effort to reorganize and redistribute resources along particular racial lines. ..."
"June 2000 saw the triumphal announcement of the completion of the human genome 'working draft'. This attracted extensive, peak and vivid coverage. While several studies have explored media coverage of the announcement, there has been little discussion of the production process: the overall aims, values and structures which underpinned this staged event. This article redresses this gap and draws on ten interviews with UK journalists and their sources to show how reporting was influenced by a number of factors, including news values, organisational identity, the history of reporting and editorial interest. This paper thus gives valuable insights into how science stories are 'made' and presented in terms of the dynamics of coverage. It reveals the ways in which political and economic factors may drive a science story and provides crucial insights into the key relationships which influence and shape media reporting of scientific research. ..."
Hewison, J. (2006). "Overcoming barriers to recruitment in health research." BMJ: British Medical Journal 332(7562): 300.
Hewitt, J. (2007). "Ethical Components of Researcher Researched Relationships in Qualitative Interviewing." Qual Health Res 17: 1149-1159.
"The majority of studies performed indicate that the age-related increase in oxidative damage to DNA is significantly reduced by CR. Early studies suggest that CR reduces DNA damage by enhancing DNA repair. With the advent of genomic technology and our increased understanding of specific repair pathways, CR has been shown to have a significant effect on major DNA repair pathways, such as NER, BER and double-strand break repair. ..."
"In The Netherlands, insurance companies are restricted in the use of genetic information of their clients by the Medical Examination Act (1998). Within the scope of this specific law, the Foundation for the Identification of Persons with Inherited Hypercholesterolaemia, the patient support association, representatives of the medical profession as well as insurers designed guidelines for risk assessment of mortality and morbidity of FH carriers. Risk assessment should be based on phenotype, that is, lipoprotein profile and the presence of classical cardiovascular risk, instead of the LDL receptor gene mutation. Applicants with FH should be accepted at normal rates if LDL-c levels are <4.0 mmol/l, in the absence of additional risk factors. After implementation of these guidelines, the number of complaints about insurance contracts has decreased markedly. ..."
"The article reports on cranial morphology. This area of study has occupied the discussion of human races for over a century. Some anthropologists in earlier times have argued that skull morphology is inappropriate for recovering human evolutionary history due to its alleged plasticity. However, recent studies have identified that cranial morphology has a strong valid genetic background, and that it acts as a neutral evolutionary entity. Other anthropologists have also pointed out that skeletal materials could be accurately sorted by geographic origin, and that cranial form is largely determined by environmental conditions. ..."
"In this paper, we explore the dynamics of expertise and their implications for the lay-expert divide at a series of public events about the new genetics. We examine participants' claims to expertise and consider how this relates to their claims to credibility and legitimacy and the way in which these events unfolded. Using a combination of ethnographic and discursive analysis, we found that participants supplemented technical expertise with other expert and lay perspectives. We can also link participants' claims to expertise to their generally positive appraisal of genetic research and services. The colonization of lay positions by expert speakers and the hybrid positioning of lay-experts was characteristic of the consensus and conservatism that emerged. This leads us to conclude that public engagement activities will not challenge the dominance of technical expertise in decision-making about science, technology and medicine without more explicit and reflexive problematization of the dynamics of expertise therein. ..."
"This article considers how IRB regulations on journalistic research methods might fare if subjected to the judicial scrutiny of a First Amendment challenge. Through analysis of relevant case law, the article considers critical elements likely to be at issue. Regardless whether the plaintiff in such a challenge could in fact prevail given the possibility that case law on conditions imposed in return for government funding could be held to apply to the regulations in question the analysis suggests that such regulations are at odds with American free-speech traditions and values. ..."
"The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. ..."
"This paper draws on a study on the development of medical genetics as a medical specialism in the U.K. and Canada to reflect on how local and national contents affect specialty formation. The paper begins by supporting earlier findings in the literature that stress, first, technological innovations as driving specialty formation, and second, the domination of physicians in the division of medical labour. Beyond this, however, the paper explores the specific circumstances under which geneticists set about turning their work into a medical specialism based on a "genetics-based approach" to illness and how "medical genetics" as a specialism has been assessed and configured to fit national and regional health service requirements. ..."
"In this paper, we consider third party research rights and risks from the perspective of social and behavioral scientists. Focusing on research about health and quality of life, we first discuss the rationale for research methods that elicit contextual information about family members, friends, co-workers, and other social contacts. Second, we discuss the matter of privacy and its central role in the current third party rights and risks dialogue. Next, we describe ways to effectively manage third-party information, building upon current recommendations. Protecting the privacy of family members in survey and pedigree research. We assert that these recommendations protect the rights of, and minimize the risks to, third parties without impeding social and behavioral health research. ..."
"Concepts that refer to trends like globalization and medicalization have, of late, become a hallmark of public debates. The logic of such concepts is that the same word can refer both to good and bad developments, partly depending on the chosen viewpoint. Hardly anyone opposes the global enforcement of human rights, but the global liberation of trade is sometimes viewed with suspicion. In a similar vein, advances in medicine are seldom seen as a bad thing, but medical solutions to social issues can be seen as problematic. ..."
Mfutso-Bengo, J. M. and A. S. Muula (2007). "Potential benefits and harm of biotechnology in developing countries: the ethics and social dimensions." Afr J Med Med Sci 36 Suppl: 63-7.
"In this paper, we discuss the risks and benefits of biotechnology especially regarding human health in developing countries. We have drawn significantly from the ethical tenets of beneficence, autonomy of individuals, fairness or justice and informed consent. ..."
"This paper examines the UK regulatory framework and the ethical arguments surrounding the use of genetic tests, specifically considering how they would apply to selecting for enhanced health characteristics. It argues that the HGC conflates the concepts of ‘best’ and ‘enhancement’ and that this limits the persuasiveness of their moral stance against preimplantation genetic selection for nondisease characteristics. Subsequently, the paper develops a conceptual framework of ethical objections related to genetic tests and selection. ..."
"Most Western Australians do not consider the statutory inclusion and use of identifiable data by the WA Birth Defects Registry to be an invasion of privacy, to the extent that such data are required for legitimate public health research, would be notified by the registrant's medical practitioner and would be kept confidentially and securely. "
"In Aotearoa (New Zealand), the government funded studies on communicating biotechnology to different sectors in the community from 2003 to 2006. Subsequently, a researcher covering the Maori sector performed a content analysis of data gathered in the community. The views indicate that a common understanding can be achieved in the diverse range of Maori tribal communities providing those communicating biotechnology can identify the view and interpretations communities associate with biotechnology. This knowledge is essential for government agencies, researchers, community practitioners, scientist, and businesses that desire to dialogue with Maori communities in the language of biotechnology. ..."
"Neulander will define as unscientific folk taxonomy all biological classification according to cultural commonalities: those traits and characteristics that like religious affiliation can only be acquired through learning, and are not biologically heritable. She examines the social consequences of giving religious labels to genetic disorders in multiracial New Mexico, where disease-based claims of secret or crypto-Jewish forebears are being used to assert an overvalued line of white ancestral descent, and where use of the term Jewish to determine who is at risk of heritable diseases is generating, in turn, the use of heritable diseases to determine who is a Jew. The phenomenon will be examined in both folkloric and academic contexts, since locals who seek crypto-Jewish legitimacy thereby striate, into colour-coded levels of human valuation, what is otherwise a cohesive society, bringing their academic enablers into active, legitimating complicity. Neulander's essay seeks to help readers distinguish between folkloric and academic motivations and methods for discerning and describing human differences. Finally, she proposes a more valid and reliable means of classifying populations at risk of heritable disorders, the better to ensure results that are both scientifically accurate and socially responsible. ..."
"Inferences of selection are challenged by several confounding factors, especially the complex demographic history of human populations, and concordance between studies is variable. Although such studies will always be associated with some uncertainty, steps can be taken to minimize the effects of confounding factors and improve our interpretation of their findings. ..."
"The author reflects on the significance of a research focusing the role of genomic medicine in treating substance use disorder. He emphasizes that the claim of the researchers that biological markers such as genotype can lead to better treatment may the basis for addictive disorder medication. He denotes that the systematic probing discussed at the research using various models may allow to which treatment patients most likely to respond. ..."
Palmer, C. G., A. Martinez, et al. (2007). "Ethnic Differences in Parental Perceptions of Genetic Testing for Deaf Infants." J Genet Couns.
"The overall finding is that reasons for, and beliefs about, genetic testing for deafness varied as a function of ethnicity. Virtually all parents sought genetic testing to understand why their child is deaf. However, Asian and/or Hispanic parents were more likely than Caucasian parents to view family planning, helping with their child's medical care, and helping the family as other important reasons for testing, and were more likely than Caucasian parents to perceive genetic testing to be useful for these purposes. Asian and Hispanic parents were more likely than Caucasian parents to perceive genetic testing in harmful terms. Genetic testing fulfills a cognitive need for parents to understand why their child is deaf, yet differences in responses suggest that Asian and Hispanic parents may seek testing for other purposes. ..."
"We clarify the scientific status of evolutionary genetic theory and explain the plausibility and value of our evolutionary genetic model of personality, despite some shortcomings with the currently available theories and data. We also have a closer look at mate choice for personality traits, point to promising ways to assess evolutionarily relevant environmental factors and defend higher-order personality domains and the g-factor as the best units for evolutionary genetic analyses. Finally, we discuss which extensions of and alternatives to our model appear most fruitful, and end with a call for more inter-disciplinary personality research grounded in evolutionary theory. ..."
"This paper illustrates the cultural construction of the thrifty gene theory and its role in the geneticization of diabetes among Aboriginal peoples. Currently, the thrifty gene reifies racial categories of biological risk by matching neo-colonial ideologies of "problematic races" with disease "epidemics." Drawing upon decolonizing critiques of science, the thrifty gene is denaturalized by challenging the assumptions of genetic homogeneity among Aboriginal peoples and the validity of comparative racial groups. The thrifty gene should not be considered a genetic marker, but rather imagined as a complex character in an evolutionary drama about genes, race and society beginning with a story of Raven Trickster. ..."
Pulley, J. M., M. M. Brace, et al. (2007). "Attitudes and perceptions of patients towards methods of establishing a DNA biobank." Cell Tissue Bank.
"This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens ('DNA Databank' project). These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. ..."
Raich, T. and J. Irwin (2007). "State and federal legislation in personalized medicine." MLO Med Lab Obs 39(8): 48.
" This article explores how one group of individuals for whom genetic disorder is highly relevant formulates their views of the body in light of genetic knowledge. Using data from an ethnographic study of 106 parents or potential parents of children with known or suspected genetic disorders who were referred to a pediatric genetic counseling and evaluation clinic in the southeastern United States, we find that these parents do, to some degree, perceive of their children's disorders in terms of a genetic body that encompasses two principal qualities: a sense of predetermined health and illness and an awareness of a profound historicity that reaches into the past and extends into the present and future. They experience this genetic body as both fixed and historical, but they also express ideas of a genetic body made less deterministic by their own efforts and future possibilities. This account of parents' experiences with genetics and clinical practice contributes to a growing body of work on the ways in which genetic information and technologies are transforming popular and medical notions of the body, and with it, health, illness, kinship relations, and personal and social identities. ..."
"The article provides an editors' introduction to this issue focusing on the interaction between genetic research and human society. ..."
Richmond, M. L. (2007). "Opportunities for women in early genetics." Nat Rev Genet 8(11): 897-902.
"Although women have long been engaged in science, their participation in large numbers was limited until they gained access to higher education in the last decades of the nineteenth century. The rediscovery of Mendel's work in 1900 coincided with the availability of a well trained female scientific workforce, and women entered the new field in significant numbers. Exploring their activities reveals much about the early development of the field that soon revolutionized biology, and about the role of gender in the social organization of science. ..."
Roskies, A. L. (2007). "Neuroethics beyond genethics. Despite the overlap between the ethics of neuroscience and genetics, there are important areas where the two diverge." EMBO Rep 8 Spec No: S52-6.
"We propose three frameworks for examining the science and ethics of report-back in exposure assessment studies: 1) clinical ethics; 2) community-based participatory research; and 3) citizen science 'data judo.' While the first approach emphasizes reporting results when the health significance of exposures is known, the latter two approaches represent a new research paradigm in which study participants can potentially play a broader role in interpreting, disseminating, and ultimately leveraging results of corporal contamination to take action to promote community health. This new frontier of research report-back in environmental health science points the way to new standards of ethical and democratic scientific practice. ..."
Rushton, J. P. (2007). "Generalisability, Groups, and Genetics." Anthropos 102(2): 746-747.
"The article presents a model of understanding that takes into account interaction, cultural knowledge, and the constraints of organizations and institutions. It analyzes discourse and cognition in high school biology classes and clinical consultations involving discussions of genetics. The analytical lenses of constraint satisfaction, coherence-based reasoning, and collective cognition reveal multilayered social, cultural, and interactional components of authority and agency that influence understanding. The analysis reveals similarities across settings in discourse structure and the ways that participants relate to local constraints. In both types of settings, participants attempt to develop process narratives that present a sequential or causal relationship between information and lead to remembered understandings of concepts. However, the absence of certain process information that links terms or concepts functions like a missing plot point in a story, hindering the development of process narratives and understandings. I ..."
Storz, P., K. Kolpatzik, et al. (2007). "Future relevance of genetic testing: A systematic horizon scanning analysis." Int J Technol Assess Health Care 23(4): 495-504.
"The aim of this study was to identify research and development on genetic testing to find out if research addresses important disease areas, how far it is from potential clinical use, and what consequences might arise for the prioritization of health technology assessment (HTA) activities. Widespread diseases are frequently addressed in research. HTA on genetic testing might focus on innovations addressing neoplastic diseases (in particular breast, colon, and prostate cancers) and pharmacogenetic applications for therapeutic prediction. The horizon scanning approach seems useful in the early steps of HTA processes to identify emerging new technologies that might have significant impact on future health care. ..."
Streetman, D. S. (2007). "Emergence and Evolution of Pharmacogenetics and Pharmacogenomics in Clinical Pharmacy over the Past 40 Years (December)." Ann Pharmacother.
" This paper discusses how personalised, nutrigenomic foods might be developed. Early results from research into food fractions that have the potential to ameliorate Crohn's disease are presented along with illustrations of candidate foods. Issues covering food customisation, consumer response and the ethics of genetic testing for food selection are also discussed briefly. ..."
Tannert, C. (2007). "The autonomy axiom and the cloning of humans." Hum Reprod Genet Ethics 13(1): 4-7.
Tarzian, A. J. (2007). "Disability and Slippery Slopes." Hastings Center Report: 49-49.
"The author addresses the issue of disability rights. She discusses Ashley's case and how it came to be framed as a disability rights issue. She describes the social model of disability. She believes advocating Ashley's rights as a disabled person seem to misinterpret the principle of respect for persons. ..."
"A strategy to understand the microbial components of the human genetic and metabolic landscape and how they contribute to normal physiology and predisposition to disease. ..."
"A study is presented on the issue of consent for research on biological samples and public support for one-time general consent. A search of studies on support of consent for such research from PubMed revealed that the majority of respondents support one-time general consent. Respondents came from a variety of ethnic and national groups, many different countries and were patients, research participants, family members, religious leaders and the public. The diverse nature of the sample suggests that one-time general consent would be an effect way of obtaining consent, especially is used universally. The author calls for a universal standard for obtaining consent. ..."
Wiles, R., V. Charles, et al. Researching researchers: lessons for research ethics, Sage Publications, Ltd.
"In this article, we draw on research conducted on an ESRC-funded study of informed consent in social research to explore the ethical issues that are raised when conducting research with one's peers. The study involved conducting focus groups and telephone interviews with academic and non-academic researchers. The ethical issues emerging from the study related to consent, data ownership and the management of confidentiality and anonymity. Participants' responses to these issues and the ways that we managed them are discussed. We conclude by exploring the implications of this study for research more generally and argue that the increased regulation of research needs to enable researchers to attend reflexively to the social context in which consent takes place. ..."
Woodcock, J. "Molecular Medicine: How, What, and When?" Clin Pharmacol Ther 82(4): 376-378.
"This paper tries to examine the doctrine of informed consent in the context of Biobank, particularly Taiwan Biobank. I argue that a clinical therapeutic research is in nature different from a prospective large scale public health biomedical research, so informed consent should have a different face in Biobank. A one-time general consent might be ethically acceptable, and the regulatory focus should be shift from informed consent to the establishment of a truly accountable governing body. ..."
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