LogoThis Week in CGREAL

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

May 14, 2007 


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


Center News

CGREAL has brochures available for distribution at conferences, meetings, etc., please contact Brenda Donahue to pick them up.

Paul Miller is co-chairing The Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities symposium on May 16, which will be webcast live.

Max Mehlman discusses Therapy or Enhancement? Two Hard Cases in the Hastings Center Bioethics Forum.

Peter Derkx, Professor of Humanism and Worldviews at the University for Humanistics at Utrecht in the Netherlands, will be visiting CGREAL until May 25. His current research interests include humanist view of anti-aging. (for more information or to set up a meeting, contact Brenda Donahue)

Anco VanderVorm, who visited CGREAL in April, has a new article in The International Journal of Geriatric Psychiatry: Genetic research into Alzheimer's Disease: a European focus group study on ethical issues

(see the full calendar)


Opportunities

Call for Applicants: Postdoctoral Associate: Ethnographic Studies of Science and Technology

Cornell University

Call for Papers: The Politics of Populations

What we find is that new forms of “population” are emerging, and older historical “populations” are re-emerging. This raises a number of questions that we would like this volume to address.

2nd Annual Chapel Hill Drug Conference:  Pharmacogenomics

One of a kind: the search for individualized therapy

May 18-19, 2007

Nobody's Child, Everybody's Children: An International Conference on New Reproductive and Genetic Technologies

May 24-26, 2007

ESRC Innogen Centre

1 June 2007

Invites applications for studentships as part of the strategic goal of advancing social, economic and technical research capacity in genomic and post-genomic advances.

The Implications of Reproductive Technologies on Parenthood at the Beginning of the 21st century
June 11- 13, 2007

Recombinant DNA Advisory Committee
June 19‑21, 2007

President’s Council on Bioethics
June 28‑29, 2007

Call for Papers: Conference on Empirical Legal Studies

July 1, 2007

Genetic Alliance - 2007 Conference
July 28-30

Call for Abstracts - 2007 Annual HRPP Conference | PRIM&R
December 14
Boston, MA.

SACGHS - public comments "
The Secretary s Advisory Committee on Genetics, Health, and Society is requesting public comment on a draft report, Realizing the Promise of Pharmacogenomics: Opportunities and Challenges. ..."

Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission.

Resources

Joseph Fagan will offer a comprehensive summer grant writing course, Critical Thinking in Research, designed for faculty and advanced graduate students in July. At the end of the course, participants will have a complete proposal ready to submit for the NIH fall 2007 deadline.

Intensive Introduction to ATLAS.ti 5 in Boston

12-13 July 2007

Intensive Introduction to NVIVO 7 in Boston

16-17 July 2007

Catalog of U.S. Government Publications (CGP)

tool for federal publications includes descriptive records for historical and current publications and provides direct links to those that are available online

Genetics in the News

BUDGET POLICY: U.S. Science Adviser Tells Researchers to Look Elsewhere -- Mervis 316 (5826): 817b -- Science "At the annual AAAS Science and Technology Forum last week, presidential science adviser John Marburger told researchers that Congress and the White House cannot keep up with the type of budgetary growth needed to capitalize on scientific opportunities. ..."

Salk Institute for Biological Studies "Now, researchers at the Salk Institute for Biological Studies have cracked open the black box of how persistent hunger promotes long life and identified a critical gene that specifically links calorie restriction (CR) to longevity. ..."

Roots Television | Where History Meets Heritage "Roots Television" is by and for avid genealogists and family history lovers of all stripes. Whether you re an archives hound, a DNA fan... Roots Television" has something for you. We have original programming, like the exclusive New York Press Conference for Annie Moore and “DNA Stories.” ..."

RaidersNewsNetwork.com "What if, by corrupting the species barrier in which each creature was to recreate after its "own kind," Watchers had successfully mingled human-animal DNA and combined the hereditary traits of different species into a single new mutation? An entirely new being Nephilim might have suddenly possessed the combined intelligence and instincts (seeing, hearing, smelling, reacting to the environment) of several life forms and in ways unfamiliar to creation. ..."

Medical News & Articles: Should prisoners be permitted to participate in medical research trials? "More than three decades later, inmates are not only less expensive than chimps, they have fewer government protections. ..."

Baby Boomers - Aging - Wisdow - Middle Age - Medicine and Health - New York Times "If an individual had achieved enough ego integrity over the course of a lifetime, then the imminent approach of infirmity and death would be accompanied by the virtue of wisdom. Unfortunately for researchers who followed, Erikson didn t bother to define wisdom. ..."

Study to Probe How Healthy Younger Adults Make Use of Genetic Tests, May 3, 2007 News Release - National Institutes of Health (NIH) "The National Human Genome Research Institute (NHGRI) and the National Cancer Institute (NCI), parts of the National Institutes of Health (NIH), have teamed with Group Health Cooperative in Seattle and Henry Ford Health System in Detroit to launch a study to investigate the interest level of healthy, young adults in receiving genetic testing for eight common conditions. Called the Multiplex Initiative, the study will also look at how people who decide to take the tests will interpret and use the results in making their own health care decisions in the future. ..."

newsobserver.com | DNA will tell the tale of wild horses "Many who see the wild horses that roam the Outer Banks conclude they're a rare and different breed. Now science may confirm it. ..."

Gene variant may be responsible for human learning - life - 12 May 2007 - New Scientist "Humans have a unique variant of a gene linked with learning and memory. This may help explain how we rapidly cut loose in intellect and language from our closest relatives. ..."

RELEASE: Survey examines Americans trust in science, approach to scientific issues "When it comes to forming opinions on controversial scientific issues, Americans show a strong deference to the views of the scientific community, according to a study co-authored by a University of Wisconsin-Madison researcher. ..."

Autism: highly heritable but not inherited - Nature Medicine "The genetic basis of autism is beginning to come to light. De novo mutations in gene copy number may have a big role. ..."

High-profile departure ends genome institute's charmed run - Nature Medicine "As she left, the organization she shepherded to star status in the scientific world melted behind her: on 11 April, The Institute for Genomic Research (TIGR), over which Fraser-Liggett had presided since 1998, was absorbed into the J. Craig Venter Institute (JCVI) and ceased to exist. ..."

Lilly protects workers' genetic info | IndyStar.com "Eli Lilly and Co. today said it has formalized an employee policy that it says is a first in the health-care industry: Employees' genetic make-up won't be used against them. ..."

GeneTests Home Page "Welcome to the GeneTests Web site, a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons. ..."

Feds Step Up Drug Marketing Cases - Forbes.com "Another pharmaceutical company was in her court, waiting to be slapped with a multi-million-dollar fine for marketing its drugs for uses that had not been approved by the federal Food & Drug Administration. ..."

Gene patenting -- steep cost for health care and patients "In this systematic review, Dendukuri and colleagues compared the cost-effectiveness of 7 strategies (based on a combination of 2 tests) to diagnose HER2 status. ..."

Majority of herb users don't follow evidence-based indications, researchers find "Sales of herbal dietary supplements have skyrocketed by 100 percent in the United States during the last 10 years, but most people don t consider evidence-based indications before using them ..."

Cataloging the structural variations in human genetics "A major new effort to uncover the medium- and large-scale genetic differences between humans may soon reveal DNA sequences that contribute to a wide range of diseases ..."

Gene mutation linked to increased athletic performance in whippets "Scientists at the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), have now discovered a genetic mutation that helps to explain why some whippets run even faster than others. Published in the open-access journal PLoS Genetics, their findings will make for a fascinating experiment in applied genetics and human nature: what will dog breeders do with this information, and what are the implications for human athletic performance? ..."

Genetic roots of bipolar disorder revealed by first genome-wide study of illness "The likelihood of developing bipolar disorder depends in part on the combined, small effects of variations in many different genes in the brain, none of which is powerful enough to cause the disease by itself, a new study shows. However, targeting the enzyme produced by one of these genes could lead to development of new, more effective medications. ..."

Common genetic variation is linked to substantial risk for heart attack "A common genetic variation on chromosome 9p21 is linked to a substantial increase in risk for heart attack, according to a new international research study. ..."

Gene mutation linked to cognition is found only in humans "The human and chimpanzee genomes vary by just 1.2 percent, yet there is a considerable difference in the mental and linguistic capabilities between the two species. A new study showed that a certain form of neuropsin, a protein that plays a role in learning and memory, is expressed only in the central nervous systems of humans and that it originated less than 5 million years ago. ..."

Top 10 DNA Paternity Testing Myths Revealed ..."

ACS :: American Cancer Society Launches Major New Study "The American Cancer Society is launching a major new cancer research study that may be the last best chance to do large-scale population research in the United States to discover the genetic and environmental factors that cause and prevent cancer. ..."

Gene advances bring ethical quandaries - The Boston Globe "A revolution in genetics is leading to almost weekly discoveries about genes linked with diseases such as diabetes, but also creating a dilemma for medical scientists: Should they tell the patients whose DNA was used in the research that they may be at risk for a serious illness? At present, that's almost taboo because of privacy policies governing most medical research ..."

National Review of HIPAA Compliance Finds Rampant Confusion, Mistakes "Mistrust among CEs is rampant, and many have implemented business practices in the name of privacy and security that have no basis in law. ..."

UCSF News Office - UCSF computer server with research subject information is stolen "A computer file server containing research subject information related to studies on causes and cures for different types of cancer was stolen from a locked UCSF office on March 30, 2007. ..."

DNA mutation causes heart disease in whites - Yahoo! News "A treasure hunt for genes has found that up to three-quarters of people of European descent have DNA that raises their risk for heart disease -- and these genes are close to a stretch of DNA linked to diabetes. ..."

Aborigines, Europeans Share African Roots, DNA Suggests "All of the Australian lineages fell within four DNA branches, which are associated with the exodus of modern humans from Africa between 50,000 and 70,000 years ago. ..."

Don t have a cow: They won t bring in the clones - Local & Regional - BostonHerald.com "Plans to bring a pair of cloned calves to the city for next weekend s BIO 2007 conference have been scrapped amid police concerns that the engineered animals would bring a crush of angry demonstrators. ..."

BBC NEWS | Health | Early baby sex test over the web "A test is being sold on the internet that enables parents to check the sex of their unborn baby at just six weeks. ..."

BBC NEWS | Science/Nature | Native American DNA found in UK "DNA testing has uncovered British descendents of Native Americans brought to the UK centuries ago as slaves, translators or tribal representatives. ..."

Is There a Genetic Basis to Race After All? | Health & Medicine | DISCOVER Magazine "Geneticists are uncovering another level of human ethnic diversity: It may not be which genes we have so much as the way they behave that accounts for our differences. ..."

 


Genetics in the Literature

 

(2007). "Completing the map of human genetic variation." Nature 447(7141): 161-165.

Aida, T., A. Konishi, et al. (2007). "Shortened life spans of biotech pioneer patents in Japan: a lesson from the DNA chip." Nat Biotech 25(5): 533-535.

Allocco, D. J., Q. Song, et al. (2007). "Geography and genography: prediction of continental origin using randomly selected single nucleotide polymorphisms." BMC Genomics 8: 68. "Accurate characterization of ancestry is possible using small numbers of randomly selected SNPs. Our findings also demonstrate the extent of variation between continentally defined groups and argue strongly against the contention that genetic differences between groups are too small to have biomedical significance. ..."

Altman, R. B., N. Benowitz, et al. (2007). "Genetic nondiscrimination legislation: a critical prerequisite for pharmacogenomics data sharing." Pharmacogenomics 8(5): 519.

Auray-Blais, C. and J. Patenaude (2007). "Biobanking Primer: Down to Basics." Science 316(5826): 830-.

Couzin, J. and J. Kaiser (2007). "GENOME-WIDE ASSOCIATION: Closing the Net on Common Disease Genes." Science 316(5826): 820-822.

de Silva, R. (2007). "Diagnostic DNA testing and consent." Pract Neurol 7(1): 62; author reply 62-3.

Dunn, W. R., M. S. George, et al. (2007). "Ethics in Sports Medicine." Am J Sports Med 35(5): 840-844."Modern sports medicine has emerged with the goal of improving performance and preventing injury, and the concept of the "team physician" has become an integral part of athletic culture. With this distinction come unique ethical challenges because the customary ethical norms for most forms of clinical practice, such as confidentiality and patient autonomy, cannot be translated easily into sports medicine. The particular areas of medical ethics that present unique challenges in sports medicine are informed consent, third parties, advertising, confidentiality, drug use, and innovative technology. Unfortunately, there is no widely accepted code of sports medicine ethics that adequately addresses these issues. ..."

Etchegary, H. and C. Perrier "Information Processing in the Context of Genetic Risk: Implications for Genetic-Risk Communication." Journal of Genetic Counseling."In this paper, we suggest that information-processing models may offer some guidance for the communication of genetic risk. The paper reviews selected literature from health and social psychology. Ultimately, it presents the Heuristic-Systematic Model (HSM) of information processing as a useful perspective from which to view genetic-risk communication. Through our review of this literature, we identify some of the variables found to influence the systematic or heuristic processing of risk information and note their relevance to genetic counseling contexts. We suggest that systematic information processing is conducive to informed decision-making, as well as improved understanding of risk information. Clinical practice implications derived from our review of these literatures are noted. ..."

Foster, C., M. Watson, et al. (2007). "Predictive genetic testing for BRCA1/2 in a UK clinical cohort: three-year follow-up." Br J Cancer 96(5): 718-24. "This prospective multicentre study assesses long-term impact of genetic testing for breast/ovarian cancer predisposition in a clinical cohort. Given the return to pre-test levels of concern among female non-carriers at 3 years and a substantial minority not engaging in recommended screening, there appears to be a need to help some women understand the meaning of their genetic status. ..."

Frikke-Schmidt, R., C. F. Sing, et al. (2007). "Subsets of SNPs define rare genotype classes that predict ischemic heart disease." Hum Genet 120(6): 865-77. "In conclusion, we present evidence that combinations of SNPs in APOE and LPL identify subgroups of individuals at substantially increased risk of IHD beyond that associated with smoking, diabetes and hypertension. ..."

Goldstein, D. B., A. C. Need, et al. (2007). "Potential genetic causes of heterogeneity of treatment effects." Am J Med 120(4 Suppl 1): S21-5."Nongenetic biologic and lifestyle-related factors, including age, sex, hepatic/renal function, diet/exercise practices, illness severity, smoking, and alcohol consumption habits can account for the heterogeneity of treatment effects (HTE). However, even when these factors are taken into account, considerable variation remains unexplained and could potentially be attributable to genetic differences between patients. . ..."

Goos, L. M. and I. Silverman (2006). "The inheritance of cognitive skills: does genomic imprinting play a role?" J Neurogenet 20(1-2): 19-40."The present study investigated this phenomenon in a nonclinical human population, using intrafamilial correlations. Broadly consistent with predictions, it was found that abilities mediated by frontal, parietal, and temporal lobes, but not occipital lobes, were more closely correlated between children and mothers versus fathers. The implications of these findings for the prevailing theory of the evolution of genomic imprinting, and for the general study of genetics and behavior, are discussed. ..."

Eshre Task Force on Ethics and Law , et al. (2007). "ESHRE Task Force on Ethics and Law 12: Oocyte donation for non-reproductive purposes." Hum. Reprod. 22(5): 1210-1213. "The present paper focuses on oocyte donation for non-reproductive purposes, i.e. research and future therapy. The general principles of research ethics apply to these interventions. The proportionality principle demands that any possible harms to the oocyte donors should be proportionate to the possible benefits for society. The non-maleficence principle states that every reasonable effort should be made to minimize risks for donors. The position is adopted that, mutatis mutandis, women who donate oocytes for research should be treated similarly to research participants in clinical trials. . ..."

Korobkin, R. (2007). "Autonomy and Informed Consent in Nontherapeutic Biomedical Research." UCLA Law Review 54(605)."But a potentially important issue in stem cell research is whether scientists conducting research not covered by the common rule and outside the context of clinical treatment are under a legal obligation to obtain the informed consent of human tissue donors. ... Four have been addressed in this Article: (1) whether informed consent is required in nontherapeutic research not governed by the common rule; (2) whether informed consent in the nontherapeutic context requires informing tissue donors of the researchers' financial incentives; (3) whether specific informed consent must be obtained before new types of research may be conducted on banked tissues; and (4) when and from whom informed consent must be obtained before excess IVF embryos are used for research. ... ..."

Krahn, T. (2007). "Where are we going with preimplantation genetic diagnosis?" CMAJ 176(10): 1445-1446.

Lampe, J. W. (2007). "Diet, genetic polymorphisms, detoxification, and health risks." Altern Ther Health Med 13(2): S108-11."Genetic polymorphisms in detoxification enzymes may account in part for individual variation in disease risk but have to be considered in the context of other aspects of human genetics, gut bacterial genetics, and environmental exposures. ..."

Lee, M. S. (2007). "Could pharmacogenetics play a role as predictor in treatment of depressive disorders?" World J Biol Psychiatry 8(1): 2-3.

Lomax, G. P., Z. W. Hall, et al. (2007). "Responsible Oversight of Human Stem Cell Research: The California Institute for Regenerative Medicine's Medical and Ethical Standards." PLoS Medicine 4(5): e114.

Marks, J. (2007). "Long shadow of Linnaeus's human taxonomy." Nature 447(7140): 28-28."Your 15 March issue honouring Carl Linnaeus brings to mind what is probably his most significant contribution to modern life: the idea that groups of people can be regarded as naturally distinct taxonomic entities, or subspecies, in the same fashion as species, genera and higher categories. ..."

Mielck, A. and W. Rogowski (2007). "[Importance of genetics for health inequalities]." Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 50(2): 181-91."In Germany it has rarely been assessed in a systematic way, if and how genetic disposition and genetic testing are linked to health inequality. The paper aims to be a contribution towards closing this gap. ..."

Mosher, D. S., P. Quignon, et al. (2007). "A Mutation in the Myostatin Gene Increases Muscle Mass and Enhances Racing Performance in Heterozygote Dogs." PLoS Genetics preprint(2007): e79.eor."Double muscling is a trait previously described in several mammalian species including cattle and sheep and is caused by mutations in the myostatin (MSTN) gene (previously referred to as GDF8). Here we describe a new mutation in MSTN found in the whippet dog breed that results in a double-muscled phenotype known as the "bully" whippet. These results highlight the utility of performance-enhancing polymorphisms, marking the first time a mutation in MSTN has been quantitatively linked to increased athletic performance. ..."

Muilu, J., L. Peltonen, et al. (2007). "The federated database - a basis for biobank-based post-genome studies, integrating phenome and genome data from 600[thinsp]000 twin pairs in Europe." Eur J Hum Genet.

Panowski, S. H., S. Wolff, et al. (2007). "PHA-4/Foxa mediates diet-restriction-induced longevity of C. elegans." Nature advanced online publication.

Paradies, Y. C., M. J. Montoya, et al. (2007). "Racialized genetics and the study of complex diseases: the thrifty genotype revisited." Perspect Biol Med 50(2): 203-27."Current debate on the use of population genetic data for complex disease research is driven by the laudable goals of disease prevention and harm reduction for all, especially dispossessed, formerly enslaved, or colonized populations. This article examines one of the oldest gene-based theories of complex disease causation: the thrifty genotype hypothesis (THG). . ..."

Reider, B. (2007). "The Athlete of "a Certain Age"." Am J Sports Med 35(5): 703-704."Not long ago, the surgeon who performed an ACL reconstruction in anyone older than 30 years might have been considered irresponsible. Although in our clinical practice we should continue to serve as the voice of reason to patients who seem intent on stretching the performance envelope too far, our research should also be directed at securing means to help them in their quest not to "go gentle into that good-night" ..."

Scully, J. L., R. Porz, et al. (2007). " YOU DON'T MAKE GENETIC TEST DECISIONS FROM ONE DAY TO THE NEXT - USING TIME TO PRESERVE MORAL SPACE." Bioethics 21(4): 208-217. "ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient-centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal depth of field . We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. ..."

Section on Hematology/Oncology and Section on, A. I. (2007). "Cord Blood Banking for Potential Future Transplantation." Pediatrics 119(1): 165-170."These scientific advances have resulted in the establishment of not-for-profit and for-profit cord blood-banking programs for allogeneic and autologous cord blood transplantation. Many issues confront institutions that wish to establish or participate in such programs. Parents often seek information from their physicians about this new biotechnology option. This document is intended to provide information to guide physicians in responding to parents' questions about cord blood donation and banking and the types and quality of cord blood banks. Provided also are recommendations about appropriate ethical and operational standards, including informed consent policies, financial disclosures, and conflict-of-interest policies for physicians, institutions, and organizations that operate or have a relationship with cord blood-banking programs. ..."

Shabo Shvo, A. (2007). "How can the emerging patient-centric health records lower costs in pharmacogenomics?" Pharmacogenomics 8(5): 507-11."The costs of clinical trials in which the subjects' inherited and somatic genetic variations are taken into consideration are higher than those trials where no genetic data are used. Such complete histories can be made available through the emerging patient-centric health records, and challenges concerning these records, such as sustainability, usability and governance, are discussed in this paper. ..."

Slaughter, L. M. (2007). "Your Genes and Privacy." Science 316(5826): 797-.

Stefanadis, C. I. (2007). "Genomics in cardiovascular disease: is it time for population screening?" Hellenic J Cardiol 48(1): 53.

Sultana, S. R., D. Roblin, et al. (2007). "Translational research in the pharmaceutical industry: from theory to reality." Drug Discov Today 12(9-10): 419-25."Here, we describe examples of the utility of linked preclinical and clinical biomarkers to measure pharmacological effects, to estimate clinical dose range, to determine efficacy, and to determine differentiation compared with existing therapies. The use of pharmacogenomics to identify novel drug targets and define enriched patient subpopulations is also discussed. We illustrate how biomarkers and a deep understanding of disease biology are used to discover additional indications for licensed drugs. ..."

van der Vorm, A., M. O. Rikkert, et al. (2007). "Genetic research into Alzheimer's Disease: a European focus group study on ethical issues." Int J Geriatr Psychiatry. "(1) The role of the family in genetic AD research differs from its role in other biomedical research into AD. The development of a family consent procedure might solve some informed consent problems. (2) Negative social consequences of genetic AD research are expected in the short term, but there are hopes of positive consequences in the long term. ..."

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