This Week in CGREAL

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

July 13, 2007 

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

Genetics in the News

New CDC funding opportunity: Reporting DNA-Based Genetic Test Results Applicable to Heritable Conditions and/or Markers of Drug Metabolism: The Clinical Laboratory Report as a Decision-Support Tool "...solicits applications proposing to develop and pilot test genetic test reports designed to integrate genotypic results pertinent to heritable conditions and/or markers for drug metabolism into a clear and coherent interpretation that effectively communicates clinically important concepts useful for clinical decision making and/or counseling. ..."

The Cancer Genome Atlas awards funds for technology development "As part of TCGA pilot , NIH awarded grants totaling $3.4 million to support the development of innovative technologies for exploring the genomic underpinnings of cancer. ..."

An Economic Gamble (The Scientist) "What does society get for the billions it spends on science? ..."

BRCA Gene Does Not Increase Breast Cancer Death, New Study "A new study shows that rates of death due to breast cancer among Israeli Ashkenazi women who carried either a BRCA1 or BRCA2 gene variant were no different to the rates for women who were non carriers. ..." [Related: Breast Cancer Gene Testing May Be Appropriate For More Young Breast Cancer Patients]

Preimplantation Genetic Diagnosis Pioneers From The USA And Europe Refute New England Journal Of Medicine Article "World leading PGD experts are issuing a rebuttal to an article on preimplantation genetic diagnosis (PGD) published recently in the New England Journal of Medicine which claims that PGD shows no benefit to pregnancy outcome in patients with advanced maternal age (AMA). ..." [Related: Study: Testing embryo's genes can cut birth rate (San Jose Mercury News ) "Pre-implantation genetic diagnosis reduces births by one-third ..." ...Europe struggles to meet the challenges posed by PGD patients travelling abroad".. increasing numbers of couples are travelling abroad for PGD because of the legal position. ..." ]

Quest for Synthetic Organisms Calls for New Rules, Critics Say "No formal regulations exist for synthetic biology, and some say that's got to change, stat. ..."

1/3 of community pharmacists don't tell parents they are dispensing off-label drugs to children "And although 78% said they would tell a family doctor that the prescription they had written would have to be dispensed off-label only 66 % felt they had a similar responsibility to inform the child s parents. ..."

Cloning the male genome may help infertile men "Artificially replicating the male genome could help men with very low sperm counts become fathers ..."

Report: Monkey embryos cloned - Newsday.com "A U.S. scientist said he cloned monkey embryos and extracted stem cells from them, a world first that may help researchers develop new medical treatments. ..."

Discovery could help bring down price of DNA sequencing "A million dollars for a map of all your genes is way out of reach for most people. The National Institutes of Health would like to bring it down to $1,000 by the year 2014 ..." [Related: Ready or Not: Here Comes the Post-Genomic Era (FirstScience) " Just try to sit back and relax, says the doctor. I m going to examine your genome. ..."]

One man's junk may be a genomic treasure " Some of the junk DNA might be considered punctuation marks commas and periods that help make sense of the coding portion of the genome ..." [Related: ENCODE Project. Science Friday. "Now, scientists studying the genome via the ENCODE project say there's a wealth of information in between the genes coded into our DNA. ..." ]

Tinkering With Humans (New York Times) "Sandel s deeper worry is that some kinds of enhancement violate the norms embedded in human practices. ..." [Related: Life after Humans (FirstScience) "Today, we are modifying and augmenting our bodies and abilities in ways which were not only impossible 100 years ago, but unfathomable. ..."]

Why can't you buy a kidney to save your life? (The Boston Globe) "A growing legal movement to recognize a new fundamental right -- 'medical self-defense' -- could bring jarring social changes ..." [Related: Threats to hope -- Desperation affects reasoning about product information "A new study argues that when our hopes are threatened, consumers are susceptible to motivated reasoning. We believe what we want to believe about products that promise to help even if the arguments don t come from credible sources. ..."]

The potential dark side of genetics (San Francisco Chronicle) "For $1,000, you soon will be able to purchase the text of your own DNA -- unless you're Russian. Putin announced a ban on the export of all human medical biological materials, worried that his citizens' genetic data could enable Western scientists to make ethnic-specific biological weapons for use against Russians. ..."

Dogs as guinea pigs in quest for genetic perfection (Chicago Tribune)

"Free of most of the ethical concerns associated with the practice of eugenics in humans, dog breeders are seizing on new genetic research to exert dominion over the canine gene pool. ..." [Related: Dogs Guide Search for Genes in Panic and Anxiety (UCSF Today) "The pace of genetic studies of diseases in dogs has quickened recently. ..."]

The Secrets to Living Past 100 (Technology Review) "A new gene-sequencing project could uncover clues into healthy aging. ..." [Related: An Age-Defying Quest (Red Wine Included) (New York Times)"SIRTRIS wants to sell you the elixir of youth. Yet the company s founders are neither cranks nor quacks, but include a well-regarded Harvard scientist and a serial entrepreneur. ..."

BBC NEWS | Moles 'good indicator to ageing' "They found the more moles a person had, the more likely their DNA was to have the properties to fight off ageing. ..."

Out of Africa (Vanity Fair) "Somewhere between 80,000 and 50,000 years ago, Africa saved Homo sapiens from extinction. Charting the DNA shared by more than six billion people, a population geneticist and director of the Genographic Project suggests what humanity "owes" its first home. ..."

CU researchers discover evidence of very recent human adaptation "natural selection has caused as much as 10% of the human genome to change in some populations in the last 15,000 to 100,000 years, when people began migrating from Africa. ..."

Pfizer lawsuit spotlights ethics of developing world clinical trials (Nat Med) "Many countries don't have the resources to police trials. ..."

 

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Genetics in the Literature

 

Anderson, A. (2007). "Ethicists balk at new emergency trials that skip informed consent." Nat Med 13(7): 765-765. ..."

Bainbridge, W. S. (2007). "Converging Technologies and Human Destiny." Journal of Medicine and Philosophy 32(3): 197 - 216. "This article considers the uneasy relations between science and religion, in the context of fertility decline, and the prospects for developing a new and self-sustaining civilization based in a broad convergence of science and technology, coalescing around a core of nanotechnology, biotechnology, information technology, and cognitive technologies. It concludes with the suggestion that the new civilization should become interstellar. ..."

Beckman, M. (2007). "Genetic nondiscrimination legislation could improve cancer prevention--if it passes." J Natl Cancer Inst 99(13): 993-5.

Clarke, A. (2007). "Should families own genetic information? No." BMJ 335(7609): 23-. ... and... Lucassen, A. (2007). "Should families own genetic information? Yes." BMJ 335(7609): 22-.

Dumez, B., K. Van Damme, et al. (2007). "Research on the socio-ethical impact of biomarker use and the communication processes in ECNIS NoE and NewGeneris IP." International Journal of Hygiene and Environmental Health 210(3-4): 263-265. "Research on the socio ethical aspects on HBM within ECNIS and Newgeneris is situated at the interface of science, ethics and law and should be considered in the context of one final goal: contributing to guidelines for a harmonized socio-ethical and legal approach of human biomonitoring activities in the EU, including procedures for effective and appropriate communication both a the individual and at the collective level, resulting in a European research atmosphere in which scientific research related to development and use of human biomarkers is promoted, and in which a simultaneous protection of the rights and dignity of the study subjects is guaranteed. A harmonized socio-ethical and legal approach not only increases the possibilities for comparison between data generated but may also allow for more equality in the protection of the rights of each citizen of the European Union. ..."

Finch, C. E. (2007). The Biology of Human Longevity: Inflammation, Nutrition, and Aging in the Evolution of Lifespans, Academic Press."Synthesizes several decades of top research on the topic of human aging and longevity particularly on the recent theories of inflammation and its effects on human health. ..."

Frank, R. (2007). "What to make of it? The (Re)emergence of a biological conceptualization of race in health disparities research." Social Science & Medicine 64(10): 1977-1983."Partly due to advancements in the Human Genome Project and related technologies, the idea that race/ethnicity does have a genetic basis is enjoying a resurgence. A rise in the use of race in genetic studies has left many researchers who are committed to a social conceptualization of race at a loss regarding how to evaluate these developments. The commentary attempts to correct the problem by providing a critical review of the state of research on race, genetics and health. This review aims to bring social health disparities researchers up-to-date on developments in the genetic literature and to facilitate a more critical engagement of research that purports to find a genetic basis to racial disparities in health. ..."

Gaff, C. L., A. J. Clarke, et al. (2007). "Process and outcome in communication of genetic information within families: a systematic review." Eur J Hum Genet..."

Greely, H. T. (2007). "The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks." Annu. Rev. Genomics Hum. Genet 8: 343–64."New methods of consent will need to be created to replace the blanket consent common to such endeavors, with a consent procedure that gives subjects some real control over what they might consider inappropriate use of their information and biological material. ..."

Guédon, J.-C. (2007). Oldenburg’s Long Shadow: Librarians, Research Scientists, Publishers, and the Control of Scientific Publishing. "asks whether the results of fundamental research in science, technology, and medicine results that clearly stand at a pre-competitive stage if viewed in commercial terms, results that may even, in some cases, save lives will remain part of humanity s knowledge commons, or whether they will be gradually confiscated for the benefit of smaller and smaller scientific and business elites. ..."

Gulley, M. L. (2007). "Public policy recommendations for oversight of molecular laboratory tests." N C Med J 68(2): 109-11.

..."

Gunderson, M. (2007). "Seeking Perfection: A Kantian Look at Human Genetic Engineering." Theoretical Medicine and Bioethics 28(2): 87-102. "Kant’s moral philosophy provides reasons that support genetic engineering—even germ-line and non-therapeutic. This is true of Kant’s imperfect duties to seek one’s own perfection and the happiness of others. It is also true of the categorical imperative. Kant’s moral philosophy does, however, provide limits to justifiable genetic engineering. ..."

Hamilton, R. J. and B. J. Bowers (2007). "The Theory of Genetic Vulnerability: A Roy Model Exemplar." Nursing Science Quarterly 20: 254."The purpose of this study was to explore the experience of adult genetic testing. Grounded theory was used to plan, guide, and analyze in-depth interviews with 29 participants. ..."

Hoover, E. L. (2007). "There is no scientific rationale for race-based research." J Natl Med Assoc 99(6): 690-2.

"In order for this kind of research to have any scientific basis, each individually defined or self-declared race would have to have a 100% pure gene pool, and the data show that the gene pool among whites, blacks and Hispanics in America is very heterogeneous. That being the case, there appears to be no justification for race-based research among human beings. ..."

Holliday, R. (2007). Ageing: The Paradox of Life Springer."The aim of this book is to dispel ignorance by explaining in non-technical language what are the reasons for aging and the myth of excessive prolongation of life. ..."

Kaye, J., N. Hawkins, et al. (2007). "Patents and translational research in genomics." Nat Biotech 25(7): 739-741."Issues concerning gene patents may be impeding the translation of laboratory research to clinical use. ..."

Kerruish, N. J., P. L. Campbell-Stokes, et al. (2007). "Maternal Psychological Reaction to Newborn Genetic Screening for Type 1 Diabetes." Pediatrics: peds.2006-1381. "The purpose of this work was to describe levels of maternal anxiety, depressive symptoms, and perceptions of infant vulnerability associated with newborn genetic screening for susceptibility to type 1 diabetes. . ..."

Khrapko, K. (2007). "The complexity of aging: Are some aging processes more equal than others?" Mech Ageing Dev.

"In my opinion, (a) independent processes may not necessarily attain equal importance because of different inherent susceptibility of the corresponding genes or gene networks to evolutionary change. However, once this is taken in consideration, a refined evolutionary argument does imply that in protected environment, continuing lifespan extension will eventually make any age-progressive degenerative process a significant contributor to aging and (b) protagonistic pleiotropies may be ineffective in making degenerative processes irrelevant for aging if multiple protective pathways are available to neutralize them. ..."

Khushf, G. (2007). "Open Questions in the Ethics of Convergence." Journal of Medicine and Philosophy 32(3): 299 - 310. "After historically situating NBIC Convergence in the context of earlier bioethical debate on genetics, ten questions are raised in areas related to the ethics of Convergence, indicating where future research is needed. ..."

Masterton, M., M. Hansson, et al. (2007). "Can the Dead be Brought into Disrepute?" Theoretical Medicine and Bioethics 28(2): 137-149. "If genetic analysis can substantiate the hypotheses of Queen Christina of Sweden's gender and possible hermaphroditic nature, could this bring the queen into disrepute 300 years after her death? This paper analyses what constitutes change and draws out the implications to the reputation of the dead. It is argued that a reputation is a relational property which can go through changes. ..."

McLeod, H. L. (2005). "Pharmacogenetic analysis of clinically relevant genetic polymorphisms." Clin Infect Dis 41 Suppl 7: S449-52.

"Little attention has been devoted to the potential utility of implementing the pharmacogenomic methodology for guiding drug selection for acutely ill patients in the critical care environment. Although such an approach has theoretical appeal as a means of enhancing quality and improving outcomes in this setting, several obstacles currently exist and slow the progress toward clinical application. ..."

Metcalfe, A., J. Haydon, et al. (2007). "Midwives' views of the importance of genetics and their confidence with genetic activities in clinical practice: implications for the delivery of genetics education." J Clin Nurs.

"The aim of the study was to ascertain the level of importance midwives attach to integrating genetics into midwifery care and to compare that with their self-reported level of confidence in incorporating genetics into their clinical practice. . ..."

Mosenifar, Z. (2007). "Population Issues in Clinical Trials." Proc Am Thorac Soc 4(2): 185-188. "Inclusion of underrepresented groups in clinical trials is important for several reasons. This article reviews the most common population issues for clinical studies: age, gender, race, socioeconomic status, comorbidities, and disease severity, with examples of each from published studies. Recommendations are also offered to overcome these barriers. ..."

Njajou, O. T., R. M. Cawthon, et al. (2007). "Telomere length is paternally inherited and is associated with parental lifespan." PNAS: 0702703104. "Our data, which are based on one of the largest family studies of human TL, support a link between TL and aging and lifespan and suggest a strong genetic influence, possibly via an imprinting mechanism, on TL regulation. ..."

Opar, A. (2007). "New schemes aim to boost minority participation in research." Nat Med 13(7): 764-765. ..."

Pakstis, A., W. Speed, et al. (2007). "Candidate SNPs for a universal individual identification panel." Human Genetics 121(3): 305-317. "Here we report on progress in identifying SNPs that show little allele frequency variation among a worldwide sample of 40 populations. ..."

Palmer, L. J. (2007). "UK Biobank: bank on it." Lancet 369(9578): 1980-2.

..."

Rothstein, M. A. (2007). "Genetic exceptionalism and legislative pragmatism." J Law Med Ethics 35(2 Suppl): 59-65."Genetic-specific nondiscrimination laws have been enacted in most states, but the laws are ineffective and increase the stigma of genetic conditions. Whether these laws are better than no new legislation depends on their consequences and a recognition of their limitations. ..."

Rubinstein, W. S. (2007). "Roles and responsibilities of a medical geneticist." Fam Cancer."Medical geneticists must generate a differential diagnosis, practice evidence-based medicine, and apply ethical, legal, and social issue (ELSI) principles in the clinical setting. Several clinical scenarios are presented which illustrate dilemmas in the cancer genetics setting. ..."

Schicktanz, S., M. Schweda, et al. "‘In a completely different light’? The role of ‘being affected’ for the epistemic perspectives and moral attitudes of patients, relatives and lay people." Medicine, Health Care and Philosophy. "In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. On this basis, we discuss the normative relevance of being affected for the justification of political participation. ..."

Schramme, T. (2007). "The Significance of the Concept of Disease for Justice in Health Care." Theoretical Medicine and Bioethics 28(2): 121-135."How we conceive of disease determines the amount of justified claims on health care resources. Therefore, the severity of scarcity depends on our interpretation of the concept of disease. I want to defend a specific combination of a theory of disease with a theory of distributive justice. A naturalist account of disease, together with sufficientarianism, is able to perform a gate-keeping function regarding entitlements to medical treatment. Although this combination cannot solve all problems of justice in health care, it may inform rationing decisions as well. ..."

Shrum, W., J. Genuth, et al. (2007). Structures of Scientific Collaboration, MIT Press."The authors find that collaborative research depends on both technology and bureaucracy; scientists claim to abhor bureaucracy, but most collaborations use it constructively to achieve their goals. ..."

Singeo, L. (2007). "The patentability of the Native Hawaiian genome." Am J Law Med 33(1): 119-39.

Strasser, B. J. (2007). "How alternative is alternative medicine?" Nat Med 13(7): 775-775. ..."

UK Department of Health (2007). Government Response to the Report from the House of Commons Science and Technology Committee: Government proposals for the regulation of hybrid and chimera embryos "On 5 April 2007, the House of Commons Science and Technology Committee published a report on Government proposals for the regulation of hybrid and chimera embryos, following a short inquiry. This paper sets out the Government s response to all of the report s 34 conclusions and recommendations. ..."

Van Hoyweghen, I., K. Horstman, et al. (2006). "Making the normal deviant: The introduction of predictive medicine in life insurance." Social Science & Medicine 63(5): 1225-1235."Based on ethnographic fieldwork in two Belgium insurance companies, this study analyses the ways insurers account for predictive medicine (lifestyle, genetics) during underwriting. Predictive medicine constitutes new ground in the old debates about individual control, responsibility and blame for health. This goes to the heart of the basis for citizenship and how this articulates with membership--or, if you want, exclusion--of the insurance pool. ..."

Wendler, D. and R. Pentz (2007). "How does the collection of genetic test results affect research participants?" Am J Med Genet A.

"The collection of genetic test results has become routine in clinical research. Yet, there are few data on the impact of this practice. The present study provides the first empirical data that we are aware of on the impact this practice has on research participants. The findings suggest that collection of genetic test results in the research setting increases many individuals' desire to know the results themselves. Some respondents attributed this effect to the fact that the data existed, while others did not want investigators to have information about them that they did not possess. A smaller proportion of respondents assumed that investigators who had collected genetic test results would monitor their clinical significance over time. These respondents were less inclined to want to know their genetic test results once an investigator was aware of them. Investigators and IRBs should recognize these phenomena and address them in the design and conduct of studies which collect genetic information. Published 2007 Wiley-Liss, Inc. ..."

WONG, N. and T. KING (2008). "The Cultural Construction of Risk Understandings through Illness Narratives." JOURNAL OF CONSUMER RESEARCH 34. "A study of breast cancer screening and treatment decisions suggests that risk understandings are influenced by the dominant illness narrative of restitution within Anglo-Western cultures. Our findings suggest that these risk understandings contribute to the consumption of health-care interventions that exceeds medical guidelines in this country. ..."

Wong, S. H. (2007). "Pharmacogenomics and Personalized Medicine - a global reality check." Clin Chem Lab Med 45(7): 799-800.

 

 

 

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