LogoThis Week in CGREAL

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

March 21 , 2007 


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


Center News

 

Registration is now open for the 2008 Translating ELSI Conference!




Opportunities

 

Senior Research Associate

Policy, Ethics and Life Sciences (PEALS) Research Centre at Newcastle University

 

Call for Applications -

Robert Wood Johnson Foundation
Investigator Awards in
Health Policy Research

Due March 26

Genomics and Society: Setting the Agendas
Apr 17, 2008

DNA, Race, and History

April 18-19, 2008

Rutgers University


What's The Use of Race?
April 25-26, 2008
Cambridge, MA

Call for Papers

Special Issue: Bioethics - Ethical Implications of Social Determinants of Health

Due May 1, 2008

Translating “ELSI”: International Congress on
Ethical, Legal and Social Implications of Genomics

May 1-3, 2008
Cleveland, Ohio

Call for Papers

Society for Disability Studies Annual Conference
Due May 1, 2008

Congress of Qualitative Inquiry: Ethics, Evidence and Social Justice

May 14-17, 2008

University of Illinois at Urbana-Champaign

Genetics, history and public understanding

May 30-31 , 2008

Barcelona, Spain

Genotyping and Association Studies: Technologies, Approaches and Applications -

June 9-10, 2008

San Francisco, CA

Public Health Genomics Institute Course -

June 10-12, 2008

Emory University

Governing Biobanks – What are the challenges?

June 23-26, 2008

Oxford, UK

Three Societies 2008 - Connecting Disciplines

July 6-8, 2008

Oxford UK

Rocky Mountain Ethics Congress

Boulder, Colorado
August 8-10, 2008

4S/EASST: Acting with science, technology and medicine

Rotterdam, The Netherlands

August 20-23, 2008

Proto-Eugenic Thinking before Galton -

Washington DC
September 25-27, 2008

Making Race, Making Health: Historical Approaches to Race, Medicine, and Public Health

November 13-15, 2008

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

Resources

Centers for Excellence in ELSI Research (CEER)

The ELSI Archives

 

Genetics in the News

Daddy's DNA (WSJ) "The benefits of over-the-counter paternity testing are clear, particularly for men, and Identigene seems subtly to be marketing the test to them. ..."

Google Backs Harvard Scientist's 100,000-Genome Quest (Bloomberg)

"A Harvard University scientist backed by Google Inc. and OrbiMed Advisors LLC plans to unlock the secrets of common diseases by decoding the DNA of 100,000 people in the world's biggest gene sequencing project. ..."

Iceland’s deCODE Suspends 60 Workers (IcelandReview) "Icelandic biopharmaceutical company deCode Genetics has given notice to 60 of its 390 workers and some have already quit. Currently markets are suffering a downswing which deCode had not seen coming. ..."

Insurance Fears Lead Many to Shun DNA Tests (New York Times) "The first, much-anticipated benefits of personalized medicine are being lost or diluted for many Americans who are too afraid that genetic information may be used against them to take advantage of its growing availability. ..."

Sequencing Your Genome - DNA - Genetics - Gene Map Becomes a Luxury Item (New York Times) "Mr. Stoicescu is the first customer of Knome, a Cambridge-based company that has promised to parse his genetic blueprint by spring. ..."

Curiosity drives the gene genie to a £1m turnover (Telegraph) "But Sykes is an entrepreneur as well as a serious player in academia - an environment where some still view starting a business as an act of Promethean rebelliousness. ..."

ISOGG Launches Newsletter "The International Society of Genetic Genealogy (ISOGG) has just launched a new newsletter. ..."

Lab Notes : Race and DNA "But while research on genetic differences that neatly track the three generally-recognized races has mostly come up empty non-overlapping genetic differences track ethnic or population groups better than they do races, which are too large to be biologically meaningful a new approach may yield more. ..."

A Beginner's Guide to Muslim Bioethics | Wired Science "When Sunni and Shiite scholars disagreed over the ethics of cloning animals, I wondered whether there were other bioethical conflicts in the Muslim world. ..."

Philip Morris Tries to Engineer the Cancer Out of Tobacco | Wired Science

"Scientists have genetically modified tobacco plants to knock out a gene that helps turns nicotine into one of the carcinogens in cured tobacco. ..."

Health Blog : Gene for 'Woolly Hair' May Spur Hair Remedies "Why bother? Well, the researchers set out to find genes involved in hair texture and sparseness that might help in the treatment of more common hair problems ..."

Health Blog : For the First Time*, an RNAi Drug Works In People "Alnylam, one of the hot little companies trying to figure out how to monkey with the genetic material RNA to treat disease, said it s just showed that one of its drugs showed a significant effect in people. ..."

This couple want a deaf child. Should we try to stop them? | Science | The Observer "From embryo selection to abortion, fertility treatment to stem cell research, medical advances have created a furious ethical debate. Now MPs must decide how far science should be allowed to go. ..."

Put young children on DNA list, urge police | The Observer "Primary school children should be eligible for the DNA database if they exhibit behaviour indicating they may become criminals in later life, according to Britain's most senior police forensics expert. ..."

DNA traces African past "But now, thanks to African Ancestry Inc., everyone can really know where Gardner s from.  He took part in an N DIGO magazine project that traced the maternal roots of six black lawmakers, politicians and celebrities. ..."

23andMe makes genomics personal and slick » VentureBeat "So it s a pleasant surprise to report that 23andMe appears to have made the process of understanding your genetic inheritance about as simple and intuitive as it can probably get. ..."[Related: Demo Account at 23andMe: Analyze Your Demo Genes! « ScienceRoll "I thought I should create an account at 23andMe and see what happens with my demo genes. ..." What You Can Do for 23andMe (and Future Generations) (The Spittoon) . ... Ann Turner on Personal Genomics Companies 23andMe vs deCODEme "Dr. Ann Turner compared 23andMe vs deCODEme with respect to genetic genealogy and gave me permission to reprint her comments here. ..." 23andMe laboratory delays (Genetic Future)]

Want to know if you're destined for Alzheimer's? (USATODAY) "Genetic test measures risk factor, but then what do you do? ..."

Applied Biosystems Surpasses Industry Milestone in Lowering the Cost of Sequencing Human Genome "Data Made Available to Worldwide Scientific Community; Project Completed for Less Than $60,000 ..."

DDC Mythbusters: Genetic Diets "While scientists who study nutrigenomics the study of interactions between nutrients and genes agree that there is a link between physiology, food and physique, they vehemently point out that the notion of tailoring a nutritional or weight loss plan based on a genetic readout is a reach at best. ..."

Genetic town halls to be held in 5 US cities "The Genetics and Public Policy Center will conduct a series of public town hall meetings to gather feedback from the public on their views related to a proposed large cohort study on the role of genes and environment in health. ..."

Genes hold the key to how happy we are, scientists say "Happiness in life is as much down to having the right genetic mix as it is to personal circumstances according to a recent study. ..."

Investigator attendance at review board reviews: hindrance or help? "Inviting researchers to attend institutional review board sessions designed to approve these same investigators requests to conduct research involving human subjects doesn t seem to affect the efficiency of the process one way or the other ..."

Scientists urge more regulation of DIY kits for health checks | Society | The Guardian "The Royal College of Pathologists and other scientific organisations will tell MPs today that companies offering DIY testing kits for allergies or genetic diseases as well as full body "MOTs" should put data on their product's efficacy in a public database so their claims can be evaluated. ..." [Related: 'At home' genomic tests for disease risk premature ]

Scientists identify new longevity genes "Scientists identified 25 genes regulating lifespan in two organisms separated by about 1.5 billion years in evolutionary change. ..." [Related:  Growing old together: Yeast, worms and people may age by similar mechanisms "A study provides new insight into the evolutionary conservation of the genes and pathways associated with aging. ..."]

Perlegen gains access to 4 million patient records (Genetic Future) "Perlegen Sciences said today it will work with an undisclosed electronic medical records company to search through data from four million patients for genetic markers that could help predict patient response to certain medical treatments. ..."

GenomeWeb News: Genetic Discrimination Bill Passes House, But Opposition emains

Gene test kits -- can they lead to dating services? (JewishJournal) "While newspaper stories about the new personalized genomics services trumpet the arrival of the future, I see nothing but the past. ..."

Eric Topol's Genomics Video Series

Brain Enhancement Is Wrong, Right? (New York Times)"Yet an era of doping may be looming in academia, and it has ignited a debate about policy and ethics that in some ways echoes the national controversy over performance enhancement accusations against elite athletes like Barry Bonds and Roger Clemens. ..."

Why a Genetic Blood Disorder Seems to Protect Against Malaria (New York Times) "Researchers believe they have figured out why a genetic blood disorder found in the tropics protects against death from malaria. ..."

Study rearranges some branches on animal tree of life "A study led by Brown University biologist Casey Dunn uses new genomics tools to answer old questions about animal evolution. The study is the most comprehensive animal phylogenomic research project to date, involving 40 million base pairs of new DNA data taken from 29 animal species. ..."

Knome Commences Whole-Genome Sequencing Process for First Clients "Knome and the Beijing Genomics Institute (BGI), announced today that they have initiated the process to sequence the entire genomes of two private individuals. These clients are expected to be the first individuals in the world to have their genome sequenced by a personal genomics firm. ..."

Creating a Cord-Blood Lifeline (TIME) "The decision to donate a newborn's umbilical-cord blood is, for many expectant mothers, a simple checkmark on a long list of prenatal choices. But for Noel Beninati, one donor's checkmark offered a lifeline. ..."

Seven new deadly sins: are you guilty? -Times Online "You offend God not only by stealing, blaspheming or coveting your neighbour s wife, but also by ruining the environment, carrying out morally debatable scientific experiments, or allowing genetic manipulations which alter DNA or compromise embryos ..."

Starting a Business (bizjournals) "Founded in 2000, the company rocketed to success, going from processing fewer than 200 DNA test kits a month in 2001 to more than 900 a month two years later. ..."


Genetics in the Literature

 

 

Achilli, A., U. A. Perego, et al. (2008). "The Phylogeny of the Four Pan-American MtDNA Haplogroups: Implications for Evolutionary and Disease Studies." PLoS ONE 3(3): e1764.

"In this study, a comprehensive overview of all available complete mitochondrial DNA (mtDNA) genomes of the four pan-American haplogroups A2, B2, C1, and D1 is provided by revising the information scattered throughout GenBank and the literature, and adding 14 novel mtDNA sequences.. ..."

 

AldridgeSusan, HuggettBrady, et al. (2008). "1000 Genomes project." Nat Biotech 26(3): 256-256.

 

Allen, K. J., A. E. Nisselle, et al. (2008). "Asymptomatic individuals at genetic risk of haemochromatosis take appropriate steps to prevent disease related to iron overload." Liver Int 28(3): 363-9.

"Individuals at a high genetic risk of developing haemochromatosis use clinical services appropriately, maintain their health and are not 'worried well'. Population genetic screening for haemochromatosis can be conducted in the work place in a way that is acceptable and beneficial to participants. ..."

 

Amundson, R. and S. Tresky (2007). "On a bioethical challenge to disability rights." J Med Philos 32(6): 541-61.

"The disability rights movement is said not to have the same moral legitimacy as other civil rights movements, such as those for women or "racial" minorities. This paper documents, and in some cases shows the flaws within, these challenges to the disability rights movement. ..."

 

Atkins, C. G. K. (2008). "The Choice of Two Mothers: Disability, Gender, Sexuality, and Prenatal Testing." Cultural Studies/Critical Methodologies 8: 106-129.

"This article employs an autoethnographic method in describing and analyzing the moral dilemmas faced by two lesbian mothers when they contemplated prenatal, genetic testing options during two pregnancies. It focuses on the inconsistencies in their decision-making processes-that is, that these same parents opt to do amniocentesis for one pregnancy but choose not for another one fewer than 2 years later. ..."

 

Ayme, S., G. Matthijs, et al. "Patenting and licensing in genetic testing." Eur J Hum Genet 16(4): 405-411.

 

Azria, E. and G. Grange (2007). "[Ethical issues of preimplantation diagnosis]." Gynecol Obstet Fertil 35(12): 1274-5.

 

Bailey, D. B., Jr., D. Skinner, et al. (2008). "Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues." Pediatrics 121(3): e693-704.

"Technology will make it possible to screen for fragile X syndrome and other conditions that do not meet current guidelines for routine newborn screening. This possibility evokes at least 8 broad ethical, legal, and social concerns. To address these concerns we recommend a national newborn screening research network; the development of models for informed decision-making; materials and approaches for helping families understand genetic information and communicating it to others; a national forum to address carrier testing and the disclosure of secondary or incidental findings; and public engagement ..."

 

Bajdik, C. D., S. Sung, et al. (2007). "Predicting the performance of a genetic testing service for cancer susceptibility." Genet Test 11(4): 381-6.

"The goal of this study was to create computer software that predicts the effect of eligibility restrictions on the performance of a genetic testing service. The software allows eligibility restrictions based on age, gender, and family history of disease. As performance measures, we considered the sensitivity and specificity of eligibility criteria to identify people with genetic cancer susceptibility, the likelihood of genetic susceptibility among people who are eligible for the service, and the likelihood of genetic susceptibility among people who are ineligible. ..."

 

Boon, W. and E. Moors (2008). "Exploring emerging technologies using metaphors - A study of orphan drugs and pharmacogenomics." Soc Sci Med.

"Due to uncertainties of several aspects of emerging health technologies, there is a need to anticipate these developments early. A first step would be to gather information and develop future visions about the technology. This paper introduces metaphor analysis as a novel way to do this. Specifically, we study the future of pharmacogenomics by comparing this technology with orphan drugs, which are more established and often act as a model with comparable (economic, research organisation, etc.) characteristics. ..."

Borry, P. and K. Dierickx (2008). "What are the limits of the duty of care? The case of clinical genetics." Personalized Medicine 5(2): 101-104.

 

Carlson, R. J. (2008). "Preemptive Public Policy for Genomics." Journal of Health Politics Policy and Law 33(1): 39-51.

"To many, genomics is merely exploitable technology for the leviathan of biotechnology. This is both shallow and short sighted. Genomics is applied knowledge based on profound and evolving science about how living things develop, how healthy or sick we are, and what our future will be like. In health care, genomics technologies are disruptive yet potentially cost-effective because they enable primary prevention, the antidote to runaway costs and declining productivity. The challenges to integration are great, however, and many bioethical and social-policy implications are alarming. Because it is poorly understood today, we must debate genomics vigorously if we are to act wisely. Public policy must lead. ..."

 

Chao, S., J. S. Roberts, et al. (2008). "Health Behavior Changes After Genetic Risk Assessment for Alzheimer Disease: The REVEAL Study." Alzheimer Dis Assoc Disord 22(1): 94-97.

"Risk information for Alzheimer disease (AD) may be communicated through susceptibility gene disclosure, even though this is not currently in clinical use. The REVEAL Study is the first randomized clinical trial of risk assessment for AD with apolipoprotein E (APOE) genotype and numerical risk estimate disclosure. We examined whether APOE genotype and numerical risk disclosure to asymptomatic individuals at high risk for AD alters health behaviors. . ..."

 

Cheng, Y. P. (2008). "[A study on origin of genetic ethics problem and countermeasure.]." Yi Chuan 30(3): 380-6.

"In this paper we focus on the evolving germ of genetic ethical problem and its evolving rule from the twofold views of human biological evolution and cultural evolution. A human being is a double offspring with biological evolution and cultural evolution . And he is a species which has both biological and cultural attribute on the earth. Through comparing and studying human biological evolution , cultural evolution, and characteristics of both biological attribute and cultural attribute, we bring forward a viewpoint that all ethical problems originate from a conflict originating from interplay of human biological evolution and cultural evolution. . ..."

 

Coban, A. (2008). "Genomic information and the public-private imbalance." Capital & Class(94): 71-105.

"This paper investigates the extent to which public-private relationships produce unbalancing effects in the case of the generation and use of genomic/genetic information. To this end, it focuses on two interconnected issues. The first is the purported importance of genomic information, which is used to justify public spending on its production. The second is the problem of ownership and accessibility. By examining the 'balance' rhetoric together with the information/molecule separation, the patentability of DNA, university-industry-government relations and the role of extended public networks for proprietary genetic products and technologies, it suggests that the supposed balance between private interests and public benefits is in fact an unbalancing act in favour of private interests under the capitalist social formation. ..."

 

 

Condit, C. (2007). "How culture and science make race "genetic": motives and strategies for discrete categorization of the continuous and heterogeneous." Lit Med 26(1): 240-68.

 

Cotton, R. G. H. and L. Hardman (2008). "Human Variome Project: progress and plans." Personalized Medicine 5(2): 99-100.

 

Couzin, J. and D. Normile (2008). "SCIENTIFIC MISCONDUCT: Two Papers From Korean Lab Found to Lack 'Scientific Truth'." Science 319(5869): 1468-1469.

 

Eichner, E. R. (2008). "Doping in Sport: Global and Ethical Issues." Journal of Sports Sciences 26(6): 671 - 672.

 

Eisinger, F. (2008). "Genetic testing for familial cancer. The French National Report (year 2003)." Community Genet 11(1): 63-7.

"Since 2002, hereditary cancer gene testing has been funded at the national level in France. Here we report on the impact of this funding on the number of tests carried out and specify the genes/syndromes on which these tests focus. ..."

Erren, T. C., P. Cullen, et al. (2008). "Results of rush to sequence genomes may be nonsense." Nature 452(7184): 151-151.

 

Farrell, E. and J. Usuka (2008). "Pharmacogenomics and drug development: the impact of US FDA postapproval tracking on clinical pharmacology." Personalized Medicine 5(2): 133-139.

 

Farrell, M. H. and P. Kuruvilla (2008). "Assessment of parental understanding by pediatric residents during counseling after newborn genetic screening." Arch Pediatr Adolesc Med 162(3): 199-204.

"OBJECTIVE: To investigate pediatric residents' efforts to assess understanding in discussions about positive newborn screening test results. The small number of assessments of understanding and the high fraction of less effective assessments do not bode well for parental understanding, especially for parents with limited health literacy. ..."

 

Flexner, C. (2008). "Pharmacoecology: a new name for an old science." Clin Pharmacol Ther 83(3): 375-9.

 

Fox, J. L. (2008). "Cloned animals deemed safe to eat, but labeling issues loom." Nat Biotech 26(3): 249-250.

 

Frudakis, Tony, et al. (2008). "The Legitimacy of Genetic Ancestry Tests." Science 319(5866): 1039b-1040.

 

Fuentes, M. (2008). "How genetic censorship would harm everyone." Nature 452(7185): 282-282.

 

Gottlieb, B. (2008). "Human genome variation and pharmacogenetics." Hum Mutat 29(4): 453-5.

"A recent HGVS-sponsored symposium has examined, for the first time, the possible effects of the discovery of very large and widespread amounts of human genome variation on the emerging fields of pharmacogenetics and pharmacogenomics. This article discusses the effects of the resultant paradigm shifts and raises a number of important questions that need to be considered in order to truly advance the field in a meaningful and significant way. ..."

 

Hadley, E. K., C. A. Smith, et al. (2008). "Parents' perspectives on having their children interviewed for research." Res Nurs Health 31(1): 4-11.

"We describe parents' perspectives on research interviews with their children with single gene conditions. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process. ..."

Haidet, A. M., L. Rizo, et al. (2008). "Long-term enhancement of skeletal muscle mass and strength by single gene administration of myostatin inhibitors." Proceedings of the National Academy of Sciences: 0709144105.

"Here, we describe a one-time gene administration of myostatin-inhibitor-proteins to enhance muscle mass and strength in normal and dystrophic mouse models for >2 years, even when delivered in aged animals. These results demonstrate a promising therapeutic strategy that warrants consideration for clinical trials in human muscle diseases. ..."

Hall, M. A. and S. Hoffman (2008). "The HIPAA Headache." Hastings Center Report 38: 7-8.

"Several letters to the editor are presented in response to the article "The HIPAA Paradox: The Privacy Rule That's Not," by Richard Sobel in the July to August 2007 issue. One reader comments on the proposal to give patients in the U.S. the right to consent to various uses of their medical information, while another points out that the lack of a general consent requirement is only one of the many shortcomings of the HIPAA privacy rule. A reply by Sobel to the letters is also presented.

. ..."

 

Hedon, B. (2007). "[Continuing debate on preimplantation genetic diagnosis (PGD)]." Gynecol Obstet Fertil 35(12): 1270.

 

Hemminki, K., A. Forsti, et al. (2008). "Estimating risks of common complex diseases: familial and population risks." J Med Genet 45(2): 126-7.

 

Hemminki, K., A. Forsti, et al. (2008). "Surveying germline genomic landscape of breast cancer." Breast Cancer Res Treat.

"The recent large genotyping studies have identified a new repertoire of breast cancer susceptibility genes and loci which are characterized by common risk alleles and low relative risks. Because of these properties, these loci explain a much larger proportion of the etiology of the particular cancers, described by the population attributable fraction (PAF), than of their familial risks. PAF is particularly suitable for 'genomic landscaping' because it defines the proportion of breast cancer explained by the variant under study. The joint PAF for the previously described high-penetrance alleles is about 1%, for moderate-penetrance alleles it is 1.5% and for low-penetrance susceptibility alleles it is 58%. The evidence appears compelling in pointing to the remarkably high population impacts of the recently described heritable loci compared to the 'classical' high-penetrance genes. ..."

 

Henderson, G., J. Garrett, et al. (2008). "Great expectations: views of genetic research participants regarding current and future genetic studies." Genet Med 10(3): 193-200.

"PURPOSE: Recruitment of prior participants in genetic research is one strategy suggested to maximize efficient use of research dollars in gene-environment studies. We explored attitudes toward genetic research participation among people in a case-control genetic epidemiology study of colon cancer, the North Carolina Colorectal Cancer Study (NCCCS). METHODS: Quantitative and qualitative cross-sectional analysis of 801 NCCCS participants. RESULTS: Participants were "very positive" (63%) or "positive" (32%) about genetic research, and "very likely" (49%) or "somewhat likely" (40%) to participate in future genetic research. Variables significantly associated with feeling "very positive" were white race, more education, nonreligious, hearing "a lot" about genetic research, and two measures of trust in medical research. Except for race and education, the same variables were significantly associated with being "very likely" to participate in future studies. Qualitatively, "good things" for self and family included discovering causes and cures for cancer, and the value of genetic information. Many could not list "bad things"; those who did mentioned anxiety, "knowing too much," losing confidentiality, or abuse of information. CONCLUSIONS: Despite very positive attitudes of these participants toward genetic research, there is significant variation based on participant characteristics. These findings should encourage and caution researchers attempting to recruit prior participants into genetic studies. ..."

Huggett, Brady (2008). "BiDil flops." Nat Biotech 26(3): 252-252.

 

Hunt, K. A., A. Zhernakova, et al. (2008). "Newly identified genetic risk variants for celiac disease related to the immune response." Nat Genet advanced online publication"

 

Jacoby, L. H., B. Young, et al. (2008). "Public Disclosure in Research with Exception from Informed Consent: The Use of Survey Methods to Assess its Effectiveness." Journal of Empirical Research on Human Research Ethics 3(1): 79-87.

 

Janssens, A. C. J. W., M. Gwinn, et al. (2008). "A Critical Appraisal of the Scientific Basis of Commercial Genomic Profiles Used to Assess Health Risks and Personalize Health Interventions." The American Journal of Human Genetics 82(3): 593-599.

"By examining previous meta-analyses and HuGE reviews, we assessed the scientific evidence supporting the purported gene-disease associations for genes included in genomic profiles offered online. We identified seven companies that offer predictive genomic profiling. WThere is insufficient scientific evidence to conclude that genomic profiles are useful in measuring genetic risk for common diseases or in developing personalized diet and lifestyle recommendations for disease prevention. ..."

 

Johnson, M. H. and K. Petersen (2008). "Public interest or public meddling? Towards an objective framework for the regulation of assisted reproduction technologies." Hum Reprod 23(3): 716-28.

"Assisted reproductive technologies (ART) bear a heavy regulatory burden in some jurisdictions. This burden constrains patient autonomy and the professional autonomy of doctors and scientists. We question why this should be by analyzing the possible public interests in ART regulation under the headings: health, financial, ethico-legal and socio-political...."

 

Karisson, J. L. (2007). "Genes for Mental Ability: More Data from Iceland." Mankind Quarterly 48: 169-178.

"A study of Icelandic scholars who achieved high scores in mathematics and science on the written final examination at the local university preparatory school reveals an increased rate of myopia as well as psychosis among them and their relatives. These data and previous similar investigations support the thesis that superior academic performance or mathematical astuteness require the possession of a psychosis gene and at least one myopia gene. The proposed system represents another example of balanced genetic polymorphisms in man. ..."

 

Kaufman, D., G. Geller, et al. (2008). "Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion." Am J Med Genet C Semin Med Genet 148(1): 31-9.

"The National Institutes of Health and other federal agencies are considering initiating a cohort study of 500,000 people, including 120,000 children, to measure genetic and environmental influences on common diseases. A community engagement pilot study was conducted to identify public attitudes and concerns about the proposed cohort study, including the ethics of involving children. ..."

Klein, R. D. and M. J. Mahoney (2008). "LabCorp v. Metabolite Laboratories: The Supreme Court Listens, but Declines to Speak." The Journal of Law, Medicine & Ethics 36(1): 141-149.

"In the United States, a longstanding legal rule exists against patenting natural phenomena. The Supreme Court recently had an opportunity to help define the boundaries and clarify the implications of this "natural phenomenon doctrine" in Laboratory Corporation of America v. Metabolite Labs., dismissed as improvidently granted. This article argues that the natural phenomenon doctrine renders both the patent claim at issue in LabCorp, and the patents that directly or indirectly claim biological correlations between genotypes and medical phenotypes, invalid or unenforceable under U.S. patent law. ..."

 

Kling, J. (2007). "Diagnosis or drug? Will pharmaceutical companies or diagnostics manufacturers earn more from personalized medicine?" EMBO Rep 8(10): 903-6.

 

Kozanczyn, C., K. Collins, et al. (2007). "Offering results to research subjects: U.S. Institutional Review Board policy." Account Res 14(4): 255-67.

"This study aims to determine the nature of United States Institutional Review Board (IRB) policy in a broad spectrum of research settings regarding the return of results to study participants. IRB policies or standard operating procedures of 207 Medical School, Industry and Non-medical School IRBs were examined on-line to determine if they incorporated specific reference to the return of results to participants at the conclusion of the research. Our findings demonstrate a marked lack of uniformity in IRB policy regarding the return of study results with over half providing no guidance. ..."

Kruglyak, L. (2008). "The road to genome-wide association studies." Nat Rev Genet 9(4): 314-318.

 

Levy, H. and J. H. Young (2008). "Perspectives from the clinic: will the average physician embrace personalized medicine?" Clin Pharmacol Ther 83(3): 492-3.

"In 1961, Richard Asher argued that the clinical question regarding a particular intervention is not "should it work?" but rather "does it work?". Since that time, clinical trials have become the cornerstone of clinical science, providing physicians access to an expanding pharmacopeia of therapeutic options. The new capacity to change the course of illness has transformed patients' lives as well as the clinical encounter. The recent call for personalized medicine is an attempt to further our therapeutic effectiveness. ..."

 

Locock, L. and J. Kai (2008). "Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era." Br J Gen Pract 58(548): 161-8.

"AIM: To explore parents' experiences of, and attitudes towards, new universal genetic screening for haemoglobin disorders. Parents support screening for haemoglobin disorders but need to be better informed and better prepared for results and what they mean. Sensitivity to patient diversity in attitudes and choices is also required. Universal screening for genetic reproductive risk will increasingly involve generalists, particularly in primary care, presenting opportunities for screening before or earlier in pregnancy, which is likely to be welcomed by patients. ..."

 

Lorusso, L. and G. Boniolo (2008). "Clustering humans: on biological boundaries." Stud Hist Philos Biol Biomed Sci 39(1): 163-70.

"We inquire into the notions of 'boundary' and 'cluster' in the fields of medical genetics, pharmacogenetics, and population genetics. First we show that the two notions are not well discussed in literature. Then we propose a promising explication of them, in which we argue that clustering is always 'property laden', that is, fundamentally dependent on decisions about the properties to be taken into account. In particular we suggest three different kinds of properties (main properties, investigating properties, and catalyzing properties) that have a role in these decisions. That is, we conclude that boundaries and clusters among humans depend on our way of considering nature. Concepts of 'race' and 'ethnic group' are discussed too, since they are the most used clusters among humans. ..."

Luebbert, R., R. C. Tait, et al. (2008). "IRB Member Judgments of Decisional Capacity, Coercion, and Risk in Medical and Psychiatric Studies." Journal of Empirical Research on Human Research Ethics 3(1): 15-24.

 

Marshall, P. A. (2008). ""Cultural competence" and informed consent in international health research." Camb Q Healthc Ethics 17(2): 206-15.

"In this paper, I briefly explore the relevance and limitations of cultural competency for informed consent to international health research, particularly in the context of low-resource settings.. ..."

McClaren, B. J., M. B. Delatycki, et al. (2007). "/`It is not in my world/': an exploration of attitudes and influences associated with cystic fibrosis carrier screening." Eur J Hum Genet 16(4): 435-444.

"This article explores perspectives of the Victorian community regarding carrier screening for cystic fibrosis prior to offering screening. In particular whether or not such carrier screening should be offered, the best time for offering carrier screening, the information required for making a decision about carrier screening, and how this information can best be provided. ..."

McNutt, L.-A., E. Waltermaurer, et al. (2008). "Are We Misjudging How Well Informed Consent Forms are Read?" Journal of Empirical Research on Human Research Ethics 3(1): 89-97.

 

Melton, Lisa (2008). "Human embryos cloned." Nat Biotech 26(3): 252-252.

 

Metcalfe, C., R. M. Martin, et al. (2008). "Low risk research using routinely collected identifiable health information without informed consent: encounters with the Patient Information Advisory Group." Journal of Medical Ethics 34: 37-40.

"We present a case study of the work required to obtain the necessary permissions from PIAG in order to conduct a large scale public health research project. In our experience it took eight months to receive permission to access basic identifying information on individuals registered at general practices, and a decision on whether we could access clinical information in medical records without consent took 18 months. Such delays pose near insurmountable difficulties to grant funded research. ..."

Michalow, A. E. "Enhancing Longevity: Novel Caloric Restriction Mimetics." Rejuvenation Research 0(0): 1-6.

 

Miller, F. A., R. Christensen, et al. (2008). "Duty to disclose what? Querying the putative obligation to return research results to participants." J Med Ethics 34(3): 210-3.

"Some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. ..."

Minkoff, H. and J. Ecker (2008). "Genetic testing and breach of patient confidentiality: Law, ethics, and pragmatics." Am J Obstet Gynecol.

"In this article we will review the manner in which the courts and professional organizations have viewed the conflict between 1 individual's right to privacy and another's right to information that could potentially be life saving or life prolonging. We will then consider the ethics of this issue and suggest an approach that physicians should take when confronting it. ..."

Morse, J. M. (2008). "Does Informed Consent Interfere With Induction?" Qual Health Res 18(4): 439-440.

 

Mrazek, M., B. Koenig, et al. (2007). "Assessing attitudes about genetic testing as a component of continuing medical education." Acad Psychiatry 31(6): 447-51.

"OBJECTIVE: To investigate the attitudes among mental health professionals regarding the use of genetic testing. After completing the course, 95% of the participants who had not been tested responded that they would be tested if genotyping was provided at no cost. Most of the participants reported that adults have the right to know their genotypes. Specifically, a majority of participants also reported that adults should have access to information regarding their genetic predispositions to both Huntington's disease and Alzheimer's disease...."

 

Munafo, M. R., E. C. Johnstone, et al. (2008). ""Intention to analyze" in pharmacogenomics studies." Cancer Epidemiol Biomarkers Prev 17(3): 740-1.

 

Nisand, I. (2007). "[Preimplantation genetic diagnosis (PGD): between fantasy and imprecation!]." Gynecol Obstet Fertil 35(12): 1271-3.

 

Ozdemir, V. and B. Godard (2007). "Evidence-based management of nutrigenomics expectations and ELSIs." Pharmacogenomics 8(8): 1051-62.

"Some of the ELSIs, such as ensuring privacy of genetic information and implications of genetic testing for health insurance and employment, may be shared across the continuum of genomic technology applications in human disease genetics, pharmacogenomics and nutrigenomics. However, there are certain aspects of nutrigenomics research that may result in unique or unprecedented ELSIs. Thus, in contrast to previous applications of genomics technologies, where the goal is to distinguish existing disease from absence of disease, the aim of nutrigenomics is the discernment of nuanced differences in predisease states. ..."

 

Parker, H., N. Qureshi, et al. (2007). "Imparting carrier status results detected by universal newborn screening for sickle cell and cystic fibrosis in England: a qualitative study of current practice and policy challenges." BMC Health Serv Res 7: 203.

"This study describes current or proposed models for imparting information in practice and explores associated challenges for policy. Differing models for communicating carrier results raise concerns about equity and clinical governance. However, this variation provides opportunity for evaluation. Timely and more detailed guidance on protocols with clarification of existing recommendations is needed. ..."

 

Paul, D. B. (2008). "Patient advocacy in newborn screening: continuities and discontinuities." Am J Med Genet C Semin Med Genet 148(1): 8-14.

"A history of newborn screening reveals both continuities and discontinuities in the agendas and funding of patient advocacy groups and in their rhetorical strategies. In particular, it demonstrates that there have always been tensions as well as partnerships with medical and other professionals, although the nature and intensity of the former have been affected by advocacy groups' increasing numbers, resources, and cultural authority. It also illuminates differences that have emerged as advocacy groups have informally allied with industry and adopted new rationales in support of access to testing. ..."

 

Pauwels, M., N. Roosens, et al. (2008). "When population genetics serves genomics: putting adaptation back in a spatial and historical context." Curr Opin Plant Biol.

"Nowadays, scientists employing -omic results in multiple scientific fields can be optimistic of their chances of revealing mechanisms involved in adaptive population divergence. However, the investment required by integrative studies greatly reduces the number of experiments that can be performed. In this context, a comprehensive choice of accessions under study is crucial. ..."

Pennisi, E. (2008). "RESEARCH FUNDING: Are Epigeneticists Ready for Big Science?" Science 319(5867): 1177-.

 

Pirzadeh, S. M., P. McCarthy Veach, et al. (2007). "A national survey of genetic counselors' personal values." J Genet Couns 16(6): 763-73.

"In this study, 292 genetic counselors completed the Schwartz Universal Values Questionnaire. Results indicate that respondents highly valued benevolence, self-direction, achievement, and universalism indicating a strong pattern of concern for the welfare of others. They placed considerably less value on stimulation, tradition, and power, which reflect personal interests. ..."

 

Prochazkova, K., L. Foretova, et al. (2008). "A rare tumor and an ethical dilemma in a family with a germline TP53 mutation." Cancer Genet Cytogenet 180(1): 65-9.

"We describe a family with a history of cancer suggestive of the Li-Fraumeni syndrome (LFS). A 27-year-old woman suffered at 17 years of age from phyllodes breast tumor and was shown to carry a germline mutation in the TP53 gene. Two years after testing, she became pregnant and was offered prenatal diagnosis by her gynecologist. The patient expressed her commitment to deliver the baby regardless of its mutation status, but with a strong interest in having the child tested soon after the birth. When she was informed that testing of children is usually postponed until after they reach 18 years of age, she consulted several geneticists, who repeatedly discouraged her from the intent to test the newborn. . ..."

Quill, E. (2008). "MEDICINE: Blood-Matching Goes Genetic." Science 319(5869): 1478-1479.

 

Reeser, J. C., D. M. Austin, et al. (2008). "Investigating Perceived Institutional Review Board Quality and Function Using the IRB Researcher Assessment Tool." Journal of Empirical Research on Human Research Ethics 3(1): 25-34.

 

Romeo-Malanda, S. and D. Nicol (2008). "Pharmacogenetic testing: legal considerations for consent, privacy and disclosure." Personalized Medicine 5(2): 155-161.

Ross, L. F. (2008). "Ethical and policy issues in pediatric genetics." Am J Med Genet C Semin Med Genet 148(1): 1-7.

"This article presents an overview to a special issue on ethical and policy issues in pediatric genetics. It discusses challenges to current practices and policies with regard to newborn screening, biobanking initiatives, and predictive genetic testing of minors. ..."

Sanderson, S. C. and J. Wardle "Associations between Anticipated Reactions to Genetic Test Results and Interest in Genetic Testing: Will Self-Selection Reduce the Potential for Harm?" Genetic Testing 0(0).

"This study assessed whether people are likely to self-select themselves into or out of genetic testing depending on whether they believe they could cope with the results. The potential for harm from future genetic susceptibility tests may be less than feared if people who anticipate adverse reactions self-select themselves out of testing. However, given that a significant proportion of people who anticipated adverse reactions also expressed interest in testing, there is still a concern about safety. It remains to be seen whether the same patterns emerge in studies that actually offer genetic tests for common gene variants in community settings. ..."

 

Scheuner, M. T., P. Sieverding, et al. (2008). "Delivery of genomic medicine for common chronic adult diseases: a systematic review." Jama 299(11): 1320-34.

" To synthesize current information on genetic health services for common adult-onset conditions by examining studies that have addressed the outcomes, consumer information needs, delivery, and challenges in integrating these services. Many gaps in knowledge about organization, clinician, and patient needs must be filled to translate basic and clinical science advances in genomics of common chronic diseases into practice. ..."

 

Sfar, S. and L. Chouchane (2008). "[Human genome project: A federator program of genomic medicine.]." Pathol Biol (Paris).

"Increasingly, it will be possible to drive predisposition testing into clinical practice, to develop new treatments or to adapt available treatments more specifically to an individual's genetic make-up. This genomic information should transform the traditional medications that are effective for every members of the population to personalized medicine and personalized therapy. The pharmacogenomics could give rise to a new generation of highly effective drugs that treat causes, not just symptoms. ..."

 

Shurin, S. B. and E. G. Nabel (2008). "Pharmacogenomics--ready for prime time?" N Engl J Med 358(10): 1061-3.

 

Sieber, J. E. (2008). "Protecting the Vulnerable: Who are They?" Journal of Empirical Research on Human Research Ethics 3(1): 1-2.

 

Suarez-Kurtz, G. (2008). "The implications of population admixture in race-based drug prescription." Clin Pharmacol Ther 83(3): 399-400; author reply 400.

 

Tilton, A. F. (2008). "Expectation of Privacy?: How the Circuits View Post-Conviction Extractions of DNA: An Examination of "Special Needs" and "General Balancing"." New England Journal on Criminal & Civil Confinement 34(1): 193-220.

"The article evaluates the Fourth Amendment jurisprudence with regard to post-conviction extractions of DNA from prisoners, and advices the courts that to keep Fourth Amendment analysis consistent, they should follow the general balancing test. In doing so, it explains the initial intrusion on the prisoner by evaluating the Combined DNA Index System. It then offers an analysis of how post-conviction extraction has derived from Fourth Amendment search and seizure jurisprudence; why the courts are using an exception to the warrant and probable cause requirements. In addition, it analyzes how the courts apply the special needs and general balancing tests; and how Supreme Court decisions have guided the circuit courts' interpretation of the issue and ultimate decisions. ..."

 

Traulsen, J. M., I. Bjornsdottir, et al. (2008). "'I'm Happy if I Can Help'. Public views on future medicines and gene-based therapy in Iceland." Community Genet 11(1): 2-10.

"To explore lay perceptions about medicine and drug therapy (including gene-based therapy) in the present and in the future. The lay public was relatively optimistic with regard to the future of drugs and gene-based therapy. Reasons for this optimism can be found in a basic trust and belief in the welfare state and the health system. These results are not consistent with studies carried out in other countries where the public appears to be focused on the negative effects of genetic research and the threats to privacy. Most participants expressed concern about potential problems with regard to social and equity issues, whereas the HSD controversy, a discourse based on the rhetoric of bioethics, was at variance with the issues focused on by the lay public. ..."

van Ommen, G. B. and M. C. Cornel "Recreational genomics? Dreams and fears on genetic susceptibility screening." Eur J Hum Genet 16(4): 403-404.

 

Visscher, P. M., W. G. Hill, et al. (2008). "Heritability in the genomics era [mdash] concepts and misconceptions." Nat Rev Genet 9(4): 255-266.

 

Warner, H. R. "Making the Political Case for Biogerontology Funding: A View from the Trenches." Rejuvenation Research 0(0): 1-4.

 

Weissman, J. S., G. Koski, et al. (2008). "Opinions of IRB Members and Chairs Regarding Investigators' Relationships with Industry." Journal of Empirical Research on Human Research Ethics 3(1): 3-13.

Whitley, R. (2008). "Focus on research: The new age of molecular diagnostics for microbiol agents." NEW ENGLAND JOURNAL OF MEDICINE 358(10): 988-989.

 

 

 

5994-6146

* To subscribe, send an email to lists@case.edu with "subscribe thisweekincgreal <your-email-address>" in the message body. To unsubscribe, send an email to lists@case.edu with "unsubscribe thisweekincgreal <your-email-address>" in the message body.