This Week in CGREAL

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

January 25 , 2007 

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

Genetics in the News

 

International consortium announces the 1000 Genomes Project "Major sequencing effort will produce most detailed map of human genetic variation to support disease studies ..." [Related: Johns Hopkins to participate in 1000 Genomes Project "an ambitious effort that will involve sequencing the genomes of numerous people from around the world to create the most detailed and medically useful picture to date of human genetic variation. ..."1000 Genomes - confusion and criticisms (Genetic Future) "Calling a project the 1000 Genomes Project when you aren't actually planning to sequence 1,000 complete genomes was always a recipe for confusion ..."]

NIH announces new initiative in epigenomics "The NIH is making this a priority in its research portfolio, taking it on as an NIH Roadmap initiative. Grant applications are now being accepted for research on epigenome mapping centers, epigenomics data analysis and coordination, technology development in epigenetics, and discovery of novel epigenetic marks in mammalian cells. ..."

Biotech That Mines Canadian Genomes Lands $31 Million (Wired) "The Canadian biotech company finds genes linked with diseases by comparing individuals' entire genomes, mining its data from the DNA of the 6 million descendants of the original 2,600 founders of Quebec. ..."

deCODEme s underwhelming personal-genomics service (VentureBeat ) "My capsule summary: At this stage, deCODEme doesn t appear to offer a heckuva lot of value for what it s charging. ..." [Related: deCODEMe - me's myCODE page "A demonstration user is now available for all visitors to deCODEme. This feature should help those who have not already ordered a Genetic Scan to gain a better understanding of the type of analysis and information we are currently providing at deCODEme. ..."]

Why Not to Buy a Scan of Your Genome (US News and World Report) "The pricy tests haven't proven their value in prevention or treatment, a cancer researcher argues ..." [Related: Genome, part 1 (The Horizon) "I'm "getting my genome done," for a few reasons. ... So how does it feel? It feels a bit scary, actually. ..."]

DNA testing may give you a clue on diseases (Houston Chronicle) "Two companies, are planning to launch products that will analyze DNA for genes associated with disease, similar to services offered by 23andMe and deCODEme. ..." [Related: LifeCode "GATC Biotech annouced the EU’s first personal genomics company. The company says that they will focus on placing an individual’s genomic data in a “medical context”. ..."]

Knome Begins Sequencing First Clients (ScienceRoll) "Knome announced today that they have initiated the process to sequence the entire enomes of two private individuals. ..."[Related: Knome turns to China for genome sequencing (VentureBeat) "The company s arrangement with BGI is exclusive, so it looks like all blood samples taken by Knome will be making the long trip to Beijing. ..."]

Growth of Genetic Tests Concerns Federal Panel (New York Times)

"The panel concluded that a growing number of the tests are being marketed with claims that are unproved, ambiguous, false or misleading. ..."

First Racially Targeted Drug Is a Flop (Wall Street Journal) "The company that sells BiDil, the first drug approved for use in a specific racial group, is ending sales and marketing for the medicine, which failed to live up to high expectations. ..." [Related: Trust between doctors and patients is culprit in efforts to cross racial divide in medical research "Study shows lingering doubts and fears hamper research participation by African Americans ...]

Ways to improve informed consent are testable, study "Findings could prevent costly but worthless attempts to improve mainstay of clinical trials ..."

Early-stage human embryos cloned from adult cells (Nature News) "A Californian company says it has brought human cloning research to a new level with the efficient production of five cloned early-stage human embryos called blastocysts from adult skin cells. ..." [Related: New Source of Embryonic Stem Cells: Will Bush Say OK? (Wired ) ...European Human Embryonic Stem Cell Registry – hESCreg "Europe has launched a registry to give researchers, regulators and the general public access to broad information about all available human embryonic stem-cell lines developed in Europe and their use. ..." Japan researcher proposes stem cell bank (Scientific American) "Creating a bank to store a new type of stem cell produced from donors' ordinary skin cells could help reduce time and money for treating patients with regenerative medicine in the future ..."]

Genetic Tests: Insurers Should Pay (BusinessWeek ) "Health insurance companies should foot the bill for genetic tests for diseases and other medical problems. Pro or con? ..." [Related: Insurers Are Considering Changes to Coverage for Genetic Testing and Related Patient Counseling Services "The increasing availability and growing clinical role for genetic tests and related counseling services is pushing health insurers to fine-tune clinical coverage policies. ..."]

GINA? Not in the omnibus (PredictER ) "the House "is worried about a veto from the President, and wants the omnibus to be as noncontroversial as possible". ..."

Newborn Screening: An Update on Minnesota (PredictER ) "A recent article in the Minneapolis-St. Paul Star Tribune indicates that the controversy between the Minnesota Department of Health (MDH) and the Citizen s Council on Healthcare (CCH) regarding collection and retention of newborn blood samples remains a live issue. ..."

Should genetic researchers be able to share your DNA? (Women's Bioethics Blog) "If you'd consented to participate in that study at your local research university, how would you feel about your (de-identified) information being used by researchers somewhere else? ..."

A Single Colon Cancer Gene Traced to 1630 - The Future of Genetic Genealogy? ( The Genetic Genealogist)h "Scientists from the University of Utah have traced a mutation in the adenomatous polyposis coli (APC) gene to a Mr. and Mrs. George Fry, who arrived in the New World aboard the William & Mary around 1630. ..."

Transhumanists as Nihilists (Center for Genetics and Society) "Thus a large minority seems to be happy to promote technologies and policies that they think will lead to dramatic, widespread, and negative results. ..."

When Genetic Diseases Lurk in Egg and Sperm Donors (Health Blog) "Because of a lack of genetic screening, a girl born in California from a donated egg has Tay-Sachs disease, which will probably kill her before her fifth birthday. But her story may prompt closer tracking of egg and sperm donors, and of birth outcomes ..."

Will probiotics bring systems biology to our table? (The Seven Stones) "How will these results translate to humans? What will be the best way to influence our microbiome? Drugs or yoghurt? These are fascinating questions and the understanding of how our physiology depends on the microbial flora could have profound consequences, particularly in these times when we seem to be in a "rush to gene-based solutions to all our problems" ..."

Deaf demand right to designer deaf children (Times Online) "DEAF parents should be allowed to screen their embryos so they can pick a deaf child over one that has all its senses intact, according to the chief executive of the Royal National Institute for Deaf and Hard of Hearing People (RNID). ..."

One Package Fits All DNA Testing "So, difficulty arises when unexpected results surface from what were supposed to be purely genealogy-based DNA tests. ..." [Related: Roots. 60 Minutes, CBS. "60 Minutes' Leslie Stahl recently reviewed a burgeoning cottage industry: genetic ancestry testing ..."]

Genetic Study Bolsters Columbus Link to Syphilis (New York Times)

"The research, they say, supports the hypothesis that returning explorers introduced organisms leading, in probably modified forms, to the first recorded syphilis epidemic, beginning in Europe in 1493 ..."

How to delete your DNA profile (The Register "It's a little known fact that it's possible to have your DNA profile removed from the National DNA Database (NDNAD). ..."

MP's 'life-saving' cord blood bid (BBC NEWS ) "An MP is to launch a bid to get doctors to offer parents the option of storing their baby's umbilical cord blood. ..."[Related: Cord Blood Biobanking: Indiana Legislative News (PredictER ) "The proposed legislation will establish a nonprofit corporation to operate an umbilical cord blood bank. ..." ]

Genetic diversity of European Americans and disease gene mapping "an international team of researchers provide the first genetic dissection of the population structure of European Americans, focusing on identifying the contributions from different genetic ancestries that are important for disease gene mapping. ..."

Genome scan shows Polynesians have little genetic relationship to Melanesians "Now, a new comprehensive genetic study has revealed that Polynesians and Micronesians have almost no genetic relation to Melanesians, and that groups that live in the islands of Melanesia are remarkably diverse. ..."

10-fold life span extension reported in simple organism "Record longevity for baker's yeast suggests strategies for helping humans live healthier and longer ..." [Related: Antiageing drug shows promise in first human test (Telegraph) "Still a long way to go, but the red wine mimic appears to be working ..."]

Breast-Cancer Genes May Pose Lower Risk (WSJ) "Women who carry certain gene mutations linked to increased breast-cancer risk may face less danger than previously believed ..." [Related: Breast cancer risk varies among women who are carriers of BRCA1 and BRCA2 gene mutations "Breast cancer risk varies widely among women who are carriers of the BRCA1 and BRCA2 mutations ..." Should children be permitted to get genetic testing for BRCA 1/2 mutations? "Many carriers of BRCA mutation and their adult offspring say yes ..."]

Debate over safety of gene therapy trials focuses on issue of informed consent "Can a patient who agrees to participate in a safety study of a gene therapy protocol give truly informed consent and understand the risks involved when the consent forms are highly technical and the physician or institution seeking their consent has a stake in the study and its outcome? ..."

DNA Shoah Project " The DNA database will be used to identify the remains of Holocaust victims, reunite siblings and close relatives separated by World War II, and conduct genetic disease research (with consent). ..."

Exploring and Collecting History Online "ECHO is a directory to 5,000+ websites concerning the history of science, technology, and industry. ..."

Genetic Alliance names Genetic Testing as its official journal "Genetic Alliance, an organization devoted to accelerating the translation and integration of genetic research into genetic services to advance healthcare, has named Genetic Testing as its official journal. ..."

HairDX - Genetic Test for Hair Loss "HairDX is the first genetic test to privately and confidentially determine if you have the genetic variations associated with early onset hair loss (Pattern Baldness). ..."

Replicating Milgram (APS Observer) "Jerry Burger from Santa Clara University managed to do the seemingly impossible he conducted a partial replication of the infamous Milgram experiment. ..." [Related: I'm a guinea pig! | Facebook "Do you wish to help furthering medicine, while benefiting from state-of-the-art medical care and possibly from a remuneration ? Become a "guinea pig" for medical research! ..."]

Genetic difference predicts antidepressant response "The researchers said their findings indicate that genetic testing could help predict the responses of patients to particular antidepressants. More broadly, they said, such tests could help predict the efficacy of any drugs used to treat neurological disease. ..."

Lupus in women: New genetic risk factors identified "International team reveals new genetic risk factors for the millions of people with lupus ..."

New gene test for prostate cancer at hand "Men with susceptibility for prostate cancer will soon be identifiable through a simple DNA test. ..."

PCAST Personalized Medicine Hearing « A Forum for Improving Drug Safety "The Presidents Council of Advisors on Science and Technology held a Personalized Medicine Hearing on January 8, 2008. Here is the testimony of Genelex s CEO, Howard Coleman ..."

Probiotics affect metabolism, says new study "Probiotics, such as yoghurt drinks containing live bacteria, have a tangible effect on the metabolism ..."

People With Anorexia Less Likely To Be Blamed When Biology, Genetics Explained "People given a biological and genetics based explanation for the causes of anorexia nervosa were less likely to blame people with anorexia for their illness than those given a sociocultural explanation ..."

Body weight influenced by thousands of genes "Obesity quick fix unlikely; problem even more complex than previously thought ..."

Study locates cholesterol genes; finds surprises about good, bad cholesterol "seven new genes that influence blood cholesterol levels, a major factor in heart disease, and confirmed 11 other genes previously thought to influence cholesterol. ..."

Study suggests genetic connection between short stature and arthritis "Common genetic variants linked to arthritis may also play a role in human height ..."

The Genetics of Language (Technology Review) "Researchers are beginning to crack the code that gives humans our way with words. ..."

Tiny genetic differences have huge consequences: McGill researchers "First measure of the effects of subtle differences between individuals may help identify disease risk factor ..."

Scientists see hope in cocaine vaccine (Houston Chronicle) "The vaccine also could raise interesting ethical questions involving who should get inoculated and what happens if confidential information about those receiving it becomes known. Although developed for therapeutic purposes the number of cocaine addicts in this country is estimated at more than 2 million the vaccine eventually is expected to be used for prevention, as well. ..."

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Genetics in the Literature

 

(2008). "Turning a blind eye." Nat Med 14(1): 1-1.

 

Bouchard, R. A. and T. Lemmens (2008). "Privatizing biomedical research - a 'third way'." Nat Biotech 26(1): 31-36.

 

Caplan, A. L. "If It's Broken, Shouldn't It Be Fixed? Informed Consent and Initial Clinical Trials of Gene Therapy." Human Gene Therapy 0(0): 5-6.

 

Chekar, C. K. and J. Kitzinger (2007). "Science, patriotism and discourses of nation and culture: reflections on the South Korean stem cell breakthroughs and scandals." New Genetics and Society 26(3): 289 - 307.

"In this paper we focus on how ideas about nation and culture were mobilized in discussion about South Korea. In particular we highlight how the same cultural explanations were used both to account for stupendous success and then to explain fraudulent failure. The South Korean case may be an extreme example of ‘scientific nationalism’, but it has ramifications for thinking about science and society across the world as a whole. ..."

 

Chulada, P. C., H. L. Vahdat, et al. (2008). "The Environmental Polymorphisms Registry: a DNA resource to study genetic susceptibility loci." Hum Genet.

"The goal is to recruit 20,000 subjects from the greater Research Triangle Park region of North Carolina and collect a sample of each subject's DNA for genetic studyThe success of the EPR based on the number of subjects recruited and genetic studies underway, suggests that it will be a model for future DNA resources. ..."

 

Couzin, J. (2008). "SCIENCE AND COMMERCE: Gene Tests for Psychiatric Risk Polarize Researchers." Science 319(5861): 274-277.

"A small California company is the first to venture into psychiatric gene testing. But is the science ready? ..."

 

Crow, M. K. (2008). "Collaboration, Genetic Associations, and Lupus Erythematosus." N Engl J Med: NEJMe0800096.

 

de Cock Buning, T., J. E. W. Broerse, et al. (2008). "Public Perception of Prenatal Genetic Testing: Arguments Put forward by the Public during a Participatory Policy Project in the Netherlands." Community Genetics 11(1): 52-62.

 

De Grey, A. D. N. J. (2007). "Life Span Extension Research and Public Debate: Societal Considerations." Studies in Ethics, Law, and Technology 1(1).

 

Detmar, S., N. Dijkstra, et al. (2008). "Parental Opinions about the Expansion of the Neonatal Screening Programme." Community Genetics 11(1): 11-17.

 

Douglas, T. (2007). "Enhancement in Sport, and Enhancement Outside Sport." Studies in Ethics, Law, and Technology 1(1).

 

Eisinger, F. (2008). "Genetic Testing for Familial Cancer." Community Genetics 11(1): 63-67.

 

Farrelly, C. (2007). "Virtue Ethics and Prenatal Genetic Enhancement." Studies in Ethics, Law, and Technology 1(1).

 

Goymer, P. (2008). "Ageing: Variety in old age." Nat Rev Genet 2008(2): 88-89.

 

Hall, W. D., C. E. Gartner, et al. (2008). "The genetics of nicotine addiction liability: ethical and social policy implications." Addiction.

"Aim: To assess the promise and risks of technological applications of genetic research on liability to develop nicotine dependence. Nicotine genomics is a very new and underdeveloped field. On the evidence to date, its advocates would be wise to avoid extravagant claims about its preventive applications. ..."

 

Heck, J. E., R. Franco, et al. (2008). "Awareness of Genetic Testing for Cancer among United States Hispanics: The Role of Acculturation." Community Genetics 11(1): 36-42.

 

Heshka, J. T., C. Palleschi, et al. (2008). "A systematic review of perceived risks, psychological and behavioral impacts of genetic testing." Genet Med 10(1): 19-32.

"We conducted a systematic review to summarize the available literature on these elements. An extensive literature review was performed to identify studies that measured the perceived risk, psychological, and/or behavioral impacts of genetic testing on individuals. Overall, predispositional genetic testing has no significant impact on psychological outcomes, little effect on behavior, and did not change perceived risk. It seems as though better patient education strategies are required. Our data would suggest better knowledge among carriers would not have significant psychological impacts and therefore, it is worth pursuing improved educational strategies. ..."

 

Hunter, D. J., M. J. Khoury, et al. (2008). "Letting the Genome out of the Bottle -- Will We Get Our Wish?" N Engl J Med 358(2): 105-107.

 

Ikeda, W. (2008). "The Public's Attitudes towards the Use of Genetic Information for Medical Purposes and Its Related Factors in Japan." Community Genetics 11(1): 18-25.

Javitt, G. H. (2007). "In Search of a Coherent Framework: Options for FDA Oversight of Genetic Tests." FOOD AND DRUG LAW JOURNAL 62(4): 617-652.

"Public health is at risk from the current unstable regulatory environment of genetic testing. The author argues that the government has failed to assure the safety and effectiveness of genetic tests at a time when obtaining accurate and reliable genetic test results increasingly is critical to health care. The paper offers a comprehensive review of the Food and Drug Administration’s (FDA’s) efforts in genetic test regulation and presents options for a more active role for the agency going forward. ..."

Jenkins, M. M., S. A. Rasmussen, et al. (2008). "Ethical issues raised by incorporation of genetics into the National Birth Defects Prevention Study." Am J Med Genet C Semin Med Genet 148C(1): 40-46.

"We present a discussion of ethical issues addressed by investigators of the National Birth Defects Prevention Study, a multisite, population-based, case-control study of risk factors for birth defects, which has incorporated the study of genetic risk factors. Study participants include infants and young children whose parents consent on their behalf, increasing the complexity of the ethical issues. Discussion of these issues and the methods employed to ensure protection of human subjects might be helpful to other investigators working to integrate genetics into large epidemiological studies. ..."

 

Kahn, J. "Informed Consent in Human Gene Transfer Clinical Trials." Human Gene Therapy 0(0): 7-8.

 

Kamerow, D. (2008). "Waiting for the genetic revolution." Bmj 336(7634): 22.

 

Kayser, M., O. Lao, et al. (2008). "Genome-wide Analysis Indicates More Asian than Melanesian Ancestry of Polynesians." American journal of human genetics 82(1): 194-198.

"The genetic data thus suggest a dual origin of Polynesians with a high East Asian but also considerable Melanesian component, reflecting sex-biased admixture in Polynesian history in agreement with the Slow Boat model. More generally, these results also demonstrate that conclusions based solely on uniparental markers, which are frequently used in population history studies, may not accurately reflect the history of the autosomal gene pool of a population. ..."

 

King, N. M. P. and R. Robeson (2007). "Athlete or Guinea Pig? Sports and Enhancement Research." Studies in Ethics, Law, and Technology 1(1).

 

Lavori, P. W., T. J. Wilt, et al. (2007). "Quality assurance questionnaire for professionals fails to improve the quality of informed consent." Clinical Trials 4(6): 638-649.

" Purpose Test the cumulative effect of a retrospective quality assurance questionnaire intended to enhance awareness in the person obtaining informed consent on the quality of the informed consent in clinical trials. Conclusions Despite prior beliefs, a standardized quality assurance tool do not enhance informed consent in actual clinical trials. Future research is needed to rigorously evaluate proposed methods to enhance informed consent prior to widespread introduction. ..."

 

MacKenzie, R., S. Chapman, et al. (2007). "'A matter of faith, not science': analysis of media coverage of prostate cancer screening in Australian news media 2003-2006." J R Soc Med 100(11): 513-521.

"The objective of this study was to examine media coverage of prostate-cancer screening in Australia. Conclusions Australian men are exposed to unbalanced and often non-evidence-based appeals to seek PSA testing. There is a disturbing lack of effort to redress this imbalance. ..."

 

McCarthy, P. (2007). "Liberal Freedoms: Enhancement Is/nt Eugenics?" Studies in Ethics, Law, and Technology 1(1).

 

McConkie-Rosell, A., G. A. Spiridigliozzi, et al. (2008). "Living with genetic risk: Effect on adolescent self-concept." Am J Med Genet C Semin Med Genet 148C(1): 56-69.

"The purpose of this study is to describe the interplay of adolescent girls' and young womens' self-concept, coping behaviors, and adjustment associated with knowledge of genetic risk for fragile X syndrome. Our findings suggest that risk information itself is threatening and for some girls, may be as threatening as learning one is a carrier. Certainty related to genetic risk status appears to make a positive difference for some girls by allowing them the opportunity to face the challenge of their genetic risk status and to begin to consider the meaning of this information.. ..."

 

McGuire, A. L., T. Caulfield, et al. (2008). "Research ethics and the challenge of whole-genome sequencing." Nat Rev Genet 2008(2): 152-156.

"The recent completion of the first two individual whole-genome sequences is a research milestone. As personal genome research advances, investigators and international research bodies must ensure ethical research conduct. We identify three major ethical considerations that have been implicated in whole-genome research: the return of research results to participants; the obligations, if any, that are owed to participants' relatives; and the future use of samples and data taken for whole-genome sequencing. Although the issues are not new, we discuss their implications for personal genomics and provide recommendations for appropriate management in the context of research involving individual whole-genome sequencing. ..."

 

Mitchell-Olds, T., M. Feder, et al. "Evolutionary and ecological functional genomics." Heredity 100(2): 101-102.

 

Modiano, G., B. M. Ciminelli, et al. (2006). "Cystic Fibrosis: Cystic fibrosis and lactase persistence: a possible correlation." Eur J Hum Genet 15(3): 255-259.

"Is the high rate of Cystic Fibrosis a by-product of lactose tolerance in Northern Europeans? ..."

 

Nielsen, L. F., oslash, et al. (2007). "Lay perspective on pharmacogenetics and its application to future drug treatment: a Danish quantitative survey." New Genetics and Society 26(3): 309 - 324.

"The purpose of the present survey is to describe the Danish perspective on pharmacogenetics and public willingness to adopt and utilize it as part of drug treatment. The population in general has a low level of knowledge about pharmacogenetics, and certain aspects are seen as disadvantageous: the lack of drug treatment for everyone, for example. Nonetheless, the attitude towards the use of pharmacogenetics is generally positive, and pharmacogenetic treatment is considered better than the treatment available at present. ..."

 

O'Dushlaine, C. T., C. Dolan, et al. (2007). "An assessment of the Irish population for large-scale genetic mapping studies involving epilepsy and other complex diseases." Eur J Hum Genet 16(2): 176-183.

 

Pattee, S. R. "Protections for Participants in Gene Therapy Trials: A Patient's Perspective." Human Gene Therapy 0(0): 9-10.

 

Patterson, d. (2008). "Research Ethics Boards as Spaces of Marginalization." Qualitative Inquiry 14(1): 18-27.

"This article complicates how Canadian universities are pressured to capitalize on research and how these same pressures affect both the collaborative and community-based research within the academy by privileging one type of research and relationships within community over others. Through examining historical influences on Research Ethics Boards in Canada, ways these pressures shape qualitative research and disturb how and what we know, as well as what can be known about who and how we work move in and out of focus. Questions are raised about living ethically as qualitative researchers within an institutional context. ..."

 

Price, A. L., J. Butler, et al. (2008). "Discerning the Ancestry of European Americans in Genetic Association Studies." PLoS Genetics 4(1): e236.

"European Americans are often treated as a homogeneous group, but in fact form a structured population due to historical immigration of diverse source populations. Discerning the ancestry of European Americans genotyped in association studies is important in order to prevent false-positive or false-negative associations due to population stratification and to identify genetic variants whose contribution to disease risk differs across European ancestries. ..."

Rao, A., J. Rothman, et al. (2008). "Genetic testing and tumor surveillance for children with cancer predisposition syndromes." Curr Opin Pediatr 20(1): 1-7.

"Here, we describe recent findings related to genetic testing and cancer surveillance in three conditions marked by the development of tumors during childhood, including retinoblastoma, Beckwith-Wiedemann syndrome/idiopathic hemihypertrophy and the Wilms' tumor-associated syndromes. We use these conditions to demonstrate how the integration of clinical genetic testing and cancer monitoring has favorably influenced the survival and quality of life for patients. . ..."

 

Robert A. Freitas, J. (2007). "Medical Nanorobotics: Breaking the Trance of Futility in Life Extension Research ( A Reply to de Grey)." Studies in Ethics, Law, and Technology 1(1).

 

Robinson, J. M. and W. M. K. Trochim (2007). "An Examination of Community Members, Researchers; and Health Professionals Perceptions of Barriers to Minority Participation in Medical Research: An Application of Concept Mapping." Ethnicity & Health 12(5): 521 - 539.

"This study seeks to contribute to the body of knowledge that is currently available relating to the specific barriers to racial/ethnic minority participation in medical research through the conceptualization and measurement of these barriers. The findings of this study suggest that there are two specific areas where barriers to minority participation may be addressed. The first area is the research system, specifically, the manner in which research studies are designed and implemented, including referral, recruitment and retention of racial/ethnic minorities. The data suggest that recruitment and retention will be aided by addressing patient concerns regarding the research process, and assuaging fears about clinical trials. The second area pertains to minority perceptions of the research process based on history and personal experiences. ..."

 

Rokas, A. (2008). "GENOMICS: Lining Up to Avoid Bias." Science 319(5862): 416-417.

 

Rowley, E. (2007). "On doing ‘being ordinary’: women's accounts of BRCA testing and maternal responsibility." New Genetics and Society 26(3): 241 - 250.

" In this paper, I explore the decision-making explanations that women at risk of BRCA-related breast and ovarian cancer provide when accounting for their decision to undergo genetic testing. In doing so, I treat women's accounts critically, and examine how and why the women verbalize their explanations in the manner that they do. ..."

 

Salter, B. (2007). "Bioethics, politics and the moral economy of human embryonic stem cell science: the case of the European Union's Sixth Framework Programme." New Genetics and Society 26(3): 269 - 288.

"Focusing on the case of the European Union's Sixth Framework Programme and drawing on a range of documentary material from the European Commission, Council of Ministers, Parliament and numerous committees, this paper analyses the cultural politics surrounding the debate about the funding of human embryonic stem cell science. . ..."

 

Shannon, K. M. and M. M. Le Beau (2008). "Cancer: Hay in a haystack." Nature 451(7176): 252-253.

 

Silber, T. J. "Human Gene Therapy, Consent, and the Realities of Clinical Research: Is It Time for a Research Subject Advocate?" Human Gene Therapy 0(0): 11-13

 

Susswein, L. R., C. Skrzynia, et al. (2008). "Increased Uptake of BRCA1/2 Genetic Testing Among African American Women With a Recent Diagnosis of Breast Cancer." J Clin Oncol 26(1): 32-36.

"African American race was associated with an overall decreased uptake of BRCA1/2 genetic testing, even when barriers of ascertainment and cost were minimized. However, among African American women, a recent diagnosis of breast cancer was associated with substantially increased uptake of testing. ..."

 

ten Kate, L. P. (2008). "Community Genetics in the Era of Public Health Genomics." Community Genetics 11(1): 1-1.

 

Tomalik-Scharte, D., A. Lazar, et al. (2007). "The clinical role of genetic polymorphisms in drug-metabolizing enzymes." Pharmacogenomics J 8(1): 4-15.

 

Traulsen, J. M., I. Björnsdóttir, et al. (2008). "'I'm Happy if I Can Help': Public Views on Future Medicines and Gene-Based Therapy in Iceland." Community Genetics 11(1): 2-10.

 

Wainwright, S., C. Williams, et al. (2007). "Remaking the body? Scientists' genetic discourses and practices as examples of changing expectations on embryonic stem cell therapy for diabetes." New Genetics and Society 26(3): 251 - 268.

 

Ward, D. M., F. M. Cohan, et al. (2007). "Genomics, environmental genomics and the issue of microbial species." Heredity 100(2): 207-219.

 

Welton, N. J., E. C. Johnstone, et al. (2008). "A cost-effectiveness analysis of genetic testing of the DRD2 Taq1A polymorphism to aid treatment choice for smoking cessation." Nicotine Tob Res 10(1): 231-40.

"Our intention was to explore the most cost-effective approach to prescribing smoking cessation pharmacotherapy, given the hypothetical availability of a test based on a single-gene variant that has been reported to predict treatment response. We conclude that it should not be assumed that genetic tailoring will necessarily be more cost-effective than applying the current "one-size-fits-all" model of pharmacotherapy for smoking cessation. In addition, single-gene tests are unlikely to be cost-effective, partly because the predictive value of these tests is likely to be modest. ..."

Wilson, S. E. (2007). "Social Perspectives and Genetic Enhancement: Whose Perspective? Whose Choice?" Studies in Ethics, Law, and Technology 1(1).

 

Wolbring, G. (2007). "Should We 'Cure' Aging? A Reply to de Grey." Studies in Ethics, Law, and Technology 1(1).

 

Yoediono, Z. and R. Snyderman (2008). "Proposal for a new health record to support personalized, predictive, preventative and participatory medicine." Personalized Medicine 5(1): 47-54.

 

 

 

 

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