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

January 12 , 2009 


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


Center News

Join us in welcoming Dr. Aaron Goldenberg as the new Assistant Professor in the Department of Bieothics and the new Assistant Director of CGREAL!

 

 

 


Opportunities

Call For Abstracts

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

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

Conferences & Meetings

 

Practical Biobanking: an intensive course
16-Feb-2009

Clinical Medicine in the Genomic Era
26-Feb-2009

Ethics in Public Life: Understandings, Applications, Controversies
15-Mar-2009

Humanities and Technology Conference 2009
26-Mar-2009

Genes for Health
03-May-2009

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

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

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

First Annual Consumer Genetics Show
09-Jun-2009

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

June 22-26, 2009

Seattle, Washington


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

History of Genetics Conference
9 September 2009

 

Resources

Centers for Excellence in ELSI Research (CEER)

The ELSI Archives

GenETHX

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

 

Genetics in the News

Discount DNA - Science Column - David Ewing Duncan - Natural Selection - Portfolio.com "Complete Genomics says it can sequence a human genome for a fraction of the current cost; a savings that could make DNA scanning affordable to millions. ..."

The Nature-Nurture Debate, Redux - ChronicleReview.com "If sociologists ignore genes, will other academics — and the wider world — ignore sociology? ..."

The Evidence Gap - Genetic Tests Offer Promise of Personalized Medicine - Series - NYTimes.com "Personalized medicine would go beyond that by determining which drug is best for which patient, rather than continuing to treat everyone the same in hopes of benefiting the fortunate few. ..."

Expert Weighs Questions On Genetic Testing : NPR "But for many people seeking answers through genetic testing, all the DNA probing ends in this twist: Less certainty, not more. ..."

The Nature-Nurture Debate, Redux - ChronicleReview.com "If sociologists ignore genes, will other academics — and the wider world — ignore sociology? ..."

Amateurs are trying genetic engineering at home - Yahoo! News "Using homemade lab equipment and the wealth of scientific knowledge available online, these hobbyists are trying to create new life forms through genetic engineering a field long dominated by Ph.D.s toiling in university and corporate laboratories. ..."

First Americans arrived as 2 separate migrations, according to new genetic evidence "The first people to arrive in America traveled as at least two separate groups to arrive in their new home at about the same time ..."

Human genomics in China "Ten years ago, the Chinese National Human Genome Center at Shanghai (South Center, hereafter) was established in the Zhangjiang HiTech Park of Pudong District in Shanghai. To commemorate this important event, which marks the beginning of the Genomics Era in China, we specially organize a series of mini-reviews for this special issue. ..."

Nutrigenomics -- developing personalized diets for disease prevention "The emerging field of nutrigenomics, which aims to identify the genetic factors that influence the body's response to diet and studies how the bioactive constituents of food affect gene expression, is explored in a series of provocative, interdisciplinary reports and analyses ..."

Genes may influence popularity "According to the investigation by behavioral geneticist S. Alexandra Burt, male college students who had a gene associated with rule-breaking behavior were rated most popular by a group of previously unacquainted peers. ..."


Genetics in the Literature

The Hastings Center From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns.

"36 overviews of issues in bioethics of high public interest, such as abortion, health care reform, human and sports enhancement, organ transplantation, personalized medicine, medical error, and stem cells. The chapters, written by leading ethicists, are nonpartisan, presenting reasonable considerations from various perspectives that are grounded in good scientific and ethical facts. They each include recent news stories, clickable experts to contact, linked resources, and (where available) recent legislation and campaign positions. Greater detail on how to use the book is in the introduction. The three framing essays offer valuable insights into the historical and increasing relevance of bioethics to public policy. ..."

Ball, W. and S. Holland (2009). "The Fear of New Technology: A Naturally Occurring Phenomenon." The American Journal of Bioethics 9(1): 14 - 16. ..."

Burris, S. (2008). "Regulatory innovation in the governance of human subjects research: A cautionary tale and some modest proposals." Regulation & Governance 2: 65-84.

De Lorenzi, M. and V. B. Pinero (2009). "Assisted human reproduction offspring and the fundamental right to identity: the recognition of the right to know one’s origins under the European Convention of Human Rights." Personalized Medicine 6(1): 79-92.

Dingwall, R. (2008). "The ethical case against ethical regulation in humanities and social science research." Twenty-First Century Society 3(1): 1 - 12.

"The system of pre-emptive ethical regulation developed in the biomedical sciences has become a major threat to research in the humanities and the social sciences (HSS). Although there is growing criticism of its effects, most commentators have tended to accept the principle of regulation. This paper argues that we should not make this concession and that ethical regulation is <i>fundamentally</i> wrong because the damage that it inflicts on a democratic society far exceeds any harm that HSS research is capable of causing to individuals. ..."

Epstein, R. S., F. W. Frueh, et al. (2009). "Payer perspectives on pharmacogenomics testing and drug development." Pharmacogenomics 10(1): 149-151.

Gaisser, S., E. Vignola-Gagne, et al. (2009). "EU policies in personalized medicine-related technologies." Personalized Medicine 6(1): 93-102.

Gartner, C. E., J. J. Barendregt, et al. (2009). "Multiple genetic tests for susceptibility to smoking do not outperform simple family history." Addiction 104(1): 118-126.

"Aims To evaluate the utility of using predictive genetic screening of the population for susceptibility to smoking. Methods The results of meta-analyses of genetic association studies of smoking behaviour were used to create simulated data sets using Monte Carlo methods. The ability of the genetic tests to screen for smoking was assessed using receiver operator characteristic curve analysis. The result was compared to prediction using simple family history information. To identify the circumstances in which predictive genetic testing would potentially justify screening we simulated tests using larger numbers of alleles (10, 15 and 20) that varied in prevalence from 10 to 50% and in strength of association [relative risks (RRs) of 1.2–2.1]. Results A test based on the RRs and prevalence of five susceptibility alleles derived from meta-analyses of genetic association studies of smoking performed similarly to chance and no better than the prediction based on simple family history. Increasing the number of alleles from five to 20 improved the predictive ability of genetic screening only modestly when using genes with the effect sizes reported to date. Conclusions This panel of genetic tests would be unsuitable for population screening. This situation is unlikely to be improved upon by screening based on more genetic tests. Given the similarity with associations found for other polygenic conditions, our results also suggest that using multiple genes to screen the general population for genetic susceptibility to polygenic disorders will be of limited utility. ..."

Goddard, K. A. B., D. Duquette, et al. (2008). "Public Awareness and Use of Direct-to-Consumer Genetic Tests: Results From 3 State Population-Based Surveys, 2006." Am J Public Health: AJPH.2007.131631

"We conducted population-based surveys on direct-to-consumer nutrigenomic testing in Michigan, Oregon, and Utah as part of the 2006 Behavioral Risk Factor Surveillance System. Awareness of the tests was highest in Oregon (24.4%) and lowest in Michigan (7.6%). Predictors of awareness were more education, higher income, and increasing age, except among those 65 years or older. Less than 1% had used a health-related direct-to-consumer genetic test. Public health systems should increase consumer and provider education and continue surveillance on direct-to-consumer genetic tests. ..."

Hynek, P. (2008). "The Hyper-Commons: How Open Science Prizes Can Expand and Level the Medical Research Playing Field." Rejuvenation Research 11(6): 1065-1072.

"Abstract The largest industry in America is increasingly incapable of serving its customers. Over-fencing of the information commons has led to unaffordable medicine, for want of which millions of Americans and people around the world go without lifesaving treatments. Eliminating patent distribution exclusivity altogether, however, is not feasible, given the entrenched nature of the health-care industry. This paper proposes a program of voluntary Open Science Prizes that would draw large numbers of new players, who would in turn produce much new medical innovation, provide academic priority recognition, and develop a growing body of patent-beating prior art that would serve as public domain firewalls on a new supranational Hyper-Commons. ..."

Kaye, J. (2008). "The regulation of direct-to-consumer genetic tests." Hum. Mol. Genet. 17(R2): R180-183.

"The past year has been marked by the emergence of several companies, such as 23andMe, deCODEME, Navigenics and Knome, offering tests using genome-wide technology direct to consumers over the internet. On the basis of the published research findings of GWAS and other studies, these companies will calculate an individual's risk to a number of common diseases, without the necessity of going through a medical practitioner. One of the significant challenges of direct-to-consumer testing is that it shifts the control of genetic testing from the clinical domain and medical professionals into the hands of consumers. No longer is genetic testing being carried out solely for medical reasons, by specialists in clinical genetics. Testing is now being used to empower consumers and can be used to shed new light on your distant ancestors, your close family and most of all, yourself' (23andMe). Such information can be shared with family and friends for fun', as part of the new recreational genomics'. Direct-to-consumer testing challenges many of the assumptions that underpin current practice surrounding genetic tests while at the same time exposing the deficiencies in the current regulatory frameworks to regulate this area. The purpose of this paper is to explore some of these issues, at a time when the science and the law are changing rapidly. ..."

Leisey, M. (2008). "Qualitative Inquiry and the IRB: Protection at all Costs?" Qualitative Social Work 7(4): 415-426.

"Implications of Institutional Review Board (IRB) decisions, especially for qualitative inquirers, may be that already marginalized voices continue to go unvoiced. Using a constructivist inquiry as a case study, this article examines IRB assessment of risk for interpretive qualitative research. ) ..."

Manolio, T. A. (2009). "Cohort studies and the genetics of complex disease." Nat Genet 41(1): 5-6. ..."

Oliveira, J. R. M. (2008). "Offering unproven genetic tests to the public is irresponsible." Nature 456(7222): 570-570.

Rushton, J. P. and A. R. Jensen (2008). "James Watson's most inconvenient truth: Race realism and the moralistic fallacy." Medical Hypotheses 71(5): 629-640.

"Summary Recent editorials in this journal have defended the right of eminent biologist James Watson to raise the unpopular hypothesis that people of sub-Saharan African descent score lower, on average, than people of European or East Asian descent on tests of general intelligence. As those editorials imply, the scientific evidence is substantial in showing a genetic contribution to these differences. The unjustified ill treatment meted out to Watson therefore requires setting the record straight about the current state of the evidence on intelligence, race, and genetics. In this paper, we summarize our own previous reviews based on 10 categories of evidence: The worldwide distribution of test scores; the g factor of mental ability; heritability differences; brain size differences; trans-racial adoption studies; racial admixture studies; regression-to-the-mean effects; related life-history traits; human origins research; and the poverty of predictions from culture-only explanations. The preponderance of evidence demonstrates that in intelligence, brain size, and other life-history variables, East Asians average a higher IQ and larger brain than Europeans who average a higher IQ and larger brain than Africans. Further, these group differences are 50-80% heritable. These are facts, not opinions and science must be governed by data. There is no place for the "moralistic fallacy" that reality must conform to our social, political, or ethical desires. ..."

Shaw, I. (2008). "Ethics and the Practice of Qualitative Research." Qualitative Social Work 7(4): 400-414.

"This article stems from a concern that relying only on codes of research ethics risks compartmentalizing ethical aspects of research, and shutting them off into a preamble to research. I explore ways in which the practice of qualitative research ethics is presented afresh - and contextualized in distinct forms - at every stage of research. I develop three linked arguments. First, the ethics of qualitative research design pose distinctive demands on principles of informed consent, confidentiality and privacy, social justice, and practitioner research. I focus on consent - for its topicality, not because it is more important or difficult - and social justice. Second, fieldwork ethics raise special considerations regarding power, reciprocity and contextual relevance. Third, ethical issues raised by the analysis and uses of qualitative inquiry evoke illustrative questions regarding the ethics of narrative research and the utilization of research. ..."

Siest, G., H. Benachour, et al. (2009). "Functional genomics towards personalized healthcare." Personalized Medicine 6(1): 19-32.

Solomon, L. M. and R. C. Noll (2008). "Reshaped destinies: Confronting our human future the need for and promise of an interdisciplinary colloquium." Gender Medicine 5(4): 354-360.

"The genomic revolution is bringing with it simultaneous needs for both scientists and nonscientists to understand and assess, in an unvarnished and nonjudgmental way, the implications of genometry. This is the field of science and technology that is taking the genetic code and what we have learned from its secrets, and reshaping our individual and collective human destinies. Together with the editor-in-chief of Gender Medicine, the authors propose an interdisciplinary group--populated by those in science, law, ethics, social policy, and the interested public--to observe, understand, and disseminate information about what is occurring in the fields of biology and chemistry that is the driving force of the genomic revolution. This article discusses the background to the Redefined Destinies Colloquium (RDC) and summarizes 4 of the topics the RDC is studying. ..."

Steele, F. R. (2009). "Personalized medicine: something old, something new." Personalized Medicine 6(1): 1-5.

Testa, G. (2008). "Stem Cells through Stem Beliefs: The Co-production of Biotechnological Pluralism." Science as Culture 17(4): 435-448.

"In the last decade human embryonic stem cells (hESCs) have emerged as prominent scientific and political objects. Their potential for regenerative medicine and the intersection with early human life spurred both great excitement and considerable ethical worries. Partially as a response to this controversy, the search for ethically unproblematic sources of hESCs became a priority. This paper analyses two paradigmatic examples of this search that emerged within the US President's Council on Bioethics (PCB). The first is altered nuclear transfer (ANT), a proposal aimed at modifying the cloning protocol to generate life forms useful for hESC harvesting but incapable of further development. From its inception to the contested implementation by leading scientists, ANT displays the intimate co-production of the scientific and the social: moral norms become encoded in genetic designs, enabling the mutual reinforcement of biotechnological rationalities and political commitments to science and social cohesion. The second example is the attempt to define embryo death in order to equate hESC harvesting to organ transplantation. Also in this case, again in a poignant display of co-production, the social design of brain death is re-enacted in the scientific quest for molecular markers of embryo death. In both cases the mutual adaptation of moral norms and epistemic practices generates biological artefacts as technological solutions to political controversies. This heralds a great intimacy between the scientific and political tasks of making sense of life. This in turn has implications for the pluralistic development of biotechnologically mature societies. ..."

(2009). "[Commentary] THE CLINICAL UTILITY OF GENETIC TESTS." Addiction: 127-128.

"The author reflects on the usefulness of genetic testing in predicting disease susceptibility and addiction susceptibility. He suggests that the main problem with the clinical application of genetic tests is that they must either test for a large genetic effect or for a genetic variant that is common in the population. he argues that in the context of clinical practice, family history and phenotype data are likely to outperform genetic tests when predicting disease susceptibility or addiction susceptibility. ..."

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