This Week in CGREAL

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

July 20, 2007 

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

Genetics in the News

ACMG recognizes progress made in newborn screening "In support of the latest March of Dimes Newborn Screening Report Card, the American College of Medical Genetics (ACMG) strongly urges every state to require complete testing of all newborns for a core panel of genetic and congenital conditions. ..."  [Related: More infants now tested for disorders (MSNBC)... Individuals With Genetic Disorders To Receive Enhanced Services Through New Grant

...Poll reveals attitudes of US parents to genetic testing ]

Pharmacogenetic Tests and Genetic Tests for Heritable Markers - Guidance for Industry and FDA Staff"It addresses intended use, device design, analytic and clinical validity, software and instrumentation, labeling, and quality control. The guidance is limited to test kits sold to clinical laboratories, and does not cover home brew tests developed by clinical laboratories. While the majority of pharmacogenetic tests and genetic tests for heritable markers are home brew tests, FDA has for the most part not regulated such tests. ..."

Science Friday: Genetics of Disease "New research links tiny gene variations to cancer, diabetes and other illnesses. Will it change the way we practice medicine? "

Race in a Bottle (Scientific American)"Drugmakers are eager to develop medicines targeted at ethnic groups, but so far they have made poor choices based on unsound science ..."

Mutating the entire genome "Genes account for only 2.5 percent of DNA in the human genetic blueprint, yet diseases can result not only from mutant genes, but from mutations of other DNA that controls genes. ..."

DNAPolicy || Center releases analysis of state DTC laws "Despite increased attention to the potential of direct-to-consumer (DTC) genetic tests to mislead consumers or waste their money including a Federal Trade Commission warning last year 26 states and the District of Columbia permit DTC laboratory testing without restriction ..." [Related: American Medical Association scrutinizes direct-to-consumer genetic tests]

C-PET -Centre For Policy On Emerging Technologies A newly formed think tank in Washington, DC, its primary focus is "on the implications of the key emerging technologies of the 21st century. C-PET s mission is to stimulate broad nonpartisan dialogue, and the development of policy proposals, on emerging technologies and their social, ethical, and legal implications." [Related:

Rise of Roboethics (Seed)"...the pace of progress in robotics is rapidly propelling these fields into uncharted ethical realms. ..."]

Super-buff cattle may hold key to treating muscular diseases (The Boston Globe) "Cambridge biotech trying to mimic breed's genetics ..."

Shortage Of Talent A Critical Condition For Pharma, Biotech (CNN)

Gene test for heart attack risk within two years (Telegraph) "A simple test to identify those most at risk of a heart attack could be widely available within two years, scientists said yesterday. ..."

Stem cells: The magic brew (Nature)"Researchers have engineered embryonic stem-like cells from normal mouse skin cells. If this method can be translated to humans, patient-specific stem cells could be made without the use of donated eggs or embryos. ..."

Scientists discover human genes hover between "on"and "off" in any given cell ""Surprisingly, about one-third of our genes, including all the regulators of cell identity, fall into this new class ..."It seems awfully risky for an adult cell to leave genes primed that could change its identity." ..."

13th Meeting of the Secretary's Advisory Committee on Genetics, Health, and Society, which included an update on the Pharmacogenomics Report, report on the Oversight of Genetic Testing, and extended sessions on Gene Patents and Direct-to-Consumer Marketing of Genetic Tests, is available online as webcasts.

Genetic variation may lower HIV load by 90% (New Scientist) "About 10% of Europeans appear to carry two copies, which leads to an average 90% viral load reduction. About 50% of Europeans carry one copy, which gives a 60% reduction. By comparison, less than 40% of people of African descent appear to carry a single copy of the polymorphism. ..."

The genes that build America: Piecing together the DNA jigsaw (The Guardian) "a boom in 'recreational genetics' is forcing America to redefine its roots. ..."

DNA May Hold Key To Right Exercise Program (MSNBC) "The two exercise enthusiasts recently took a new genetic profiling test called the optimum athletic performance DNA analysis.Its maker said it can tell you what kind of exercise suits you best. ..."

Cancer-proof mice live longer (Nature) "An extra copy of a tumour-killing gene helps mice to stay young. ..."

The Fountain of Youth, Uncorked (ABC News)

"Two Scientists Attempt to Control Aging Using Resveratrol, a Compound Found in Red Wine ..."

Atomic Tune-Up: How the Body Rejuvenates Itself (NPR ) "Are people really themselves if their atoms are always new, or are they new people each year? ..."

Links between food cravings, types of cravings, and weight management "Accepting food cravings and keeping them in check may be an important component of weight management, according to findings from the first six-month phase of a calorie-restriction study ..."

 

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Genetics in the Literature

Aktan-Collan, K., A. Haukkala, et al. (2007). "Direct contact in inviting high-risk members of hereditary colon cancer families to genetic counselling and DNA-testing." J Med Genet.

"In this large-scale study, relatives in cancer families were actively recruited to reach them for genetic counselling. Their attitudes were encouraging, and psychosocial consequences were similar to the family-mediated approach. Our results suggest the appropriateness of direct contact as an alternative method concerning a life-threatening treatable disease. ..."

Bamshad, M. (2007). "Lost in translation: meaningful policies for writing about genetics and race." Am J Med Genet A 143(9): 971-2.

Beery, T. A. and J. K. Williams (2007). "Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders." Genet Test 11(2): 111-23.

"This paper presents a systematic review of the research literature on risk reduction and health promotion behaviors following clinical genetic testing for adult onset conditions, primarily HBOC, familial colon cancers, and HD. Insights gleaned from this review are discussed as a basis for planning monitoring of health promotion and risk-reduction behaviors for genetic testing for present and future use. ..."

Culbertson, L. (2007). ""Human-ness", "dehumanisation" and performance enhancement." Sport, Ethics and Philosophy 1(2): 195 - 217. "The dehumanisation argument is interesting but incomplete. It is incomplete because we do not have an agreed-upon conception of what it is to be human. Without this it is difficult to see why some practices should count as dehumanising.The article attempts to clarify some objections to the use of performance-enhancing drugs and the prospect of genetic modification of athletes by sketching an overview of possible concrete uses of "dehumanise". ..."

Foster, M. W. and R. R. Sharp (2007). "Share and share alike: deciding how to distribute the scientific and social benefits of genomic data." Nat Rev Genet 8(8): 633-639. "Emerging technologies make genomic analyses more efficient and less expensive, enabling genome-wide association and gene–environment interaction studies. In anticipation of their results, funding agencies such as the US National Institutes of Health and the Wellcome Trust are formulating guidelines for sharing the large amounts of genomic data that are generated by the projects that they sponsor. Data-sharing policies can have varying implications for how disease susceptibility and drug-response research will be pursued by the scientific community, and for who will benefit from the resulting medical discoveries. We suggest that the complex interplay of stakeholders and their interests, rather than single-issue and single-stakeholder perspectives, should be considered when deciding genomic data-sharing policies. ..."

Jonsson, K. (2007). "Who's afraid of Stella Walsh? On gender, "gene cheaters", and the promises of cyborg athletes." Sport, Ethics and Philosophy 1(2): 239 - 262. "In this article, I argue that there are moral reasons to embrace the construction of self-designing and sex/gender-neutral cyborg athletes. In fact, with the prospect of advanced genetic and cyborg technology, we may face a future where sport (as we know it) occurs in its purest form; that is, where athletes get evaluated by athletic performance only and not by their gender, and where it becomes impossible to discriminate athletes based on their body constitution and gender identity. The gender constructions within sports and sports culture are solid, however. Here, I argue that the rough distinctions we use to define people in terms of sex/gender tend to create and recreate old-fashioned and discriminatory sex/gender-boundaries. A morally reasonable way of meeting this issue, is to say that the problem is not the individuals who (for one reason or another) transcend certain gender categories, but the categories in themselves. ..."

Klitzman, R., D. Thorne, et al. (2007). "Disclosures of Huntington disease risk within families: Patterns of decision-making and implications." Am J Med Genet A. "Individuals often disclosed because of perceived duty to foster the health of their family members, enabling these others to pursue appropriate medical evaluation, if desired. Yet tensions arose because the information could burden these members, who also have rights to remain "in denial" if they wish and not discuss the topic or pursue testing. Post-disclosure, dilemmas emerged of whether and how much to encourage family members to pursue testing. These data shed important light on critical issues that have received little, if any, attention concerning what, how, and when disclosure occurs, and have key implications for at-risk individuals, genetic counselors, and other health care workers (HCWs), and for future research. At-risk individuals would benefit from considering these issues in advance. HCWs need to realize that these decisions are multi-faceted. Future research can explore whether, when, how, and how often HCWs raise these issues with individuals. ..."

Lenk, C. (2007). "Is enhancement in sport really unfair? Arguments on the concept of competition and equality of opportunities." Sport, Ethics and Philosophy 1(2): 218 - 228. "Enhancement activities are contradictory to basic requirements and preconditions of sports competitions. Therefore, the normative background of the current concept of sports competitions, as such, limits the use of enhancement practices to a rather low level. ..."

Manica, A., W. Amos, et al. (2007). "The effect of ancient population bottlenecks on human phenotypic variation." Nature 448(7151): 346-348. "We find evidence for an African origin, placed somewhere in the central/southern part of the continent, which harbours the highest intra-population diversity in phenotypic measurements. We failed to find evidence for a second origin, and we confirm these results on a large genetic data set. ..."

McNamee, M. (2007). "Whose prometheus? Transhumanism, biotechnology and the moral topography of sports medicine." Sport, Ethics and Philosophy 1(2): 181 - 194. "The therapy/enhancement distinction is a controversial one in the philosophy of medicine, yet the idea of enhancement is rarely if ever questioned as a proper goal of sports medicine. This opens up latitude to those who may seek to use elite sport as a vehicle of legitimation for their nature-transcending ideology. Given recent claims by transhumanists to develop our human nature and powers with the aid of biotechnology, I sketch out two interpretations of the myth of Prometheus, in Hesiod and Aeschylus, which can help frame the moral limits of sports medicine. By way of conclusion I assemble some banal reminders: We are mortal beings; our vulnerability to disease, injury and the waning of our powers, far from something we can overcome or eliminate, represent natural limits both for morality and medicine generally and sports medicine in particular. ..."

Miah, A. (2007). "Genetics, bioethics and sport." Sport, Ethics and Philosophy 1(2): 146 - 158. "The gene-doping example can elucidate concerns about the ethics of sport and human enhancement more generally. Subsequently, the conceptual overlap between sport and bioethics is explored in the context of discussions about doping. From here, the paper investigates the ethics of gene-doping, arguing that a straightforward mapping of medical ethics onto sport ethics is not justified. In conclusion, it argues that gene-doping is consistent with a broader ethics of enhancement within elite sports. Moreover, the increased legitimacy of lifestyle medicine in society is likely to reduce the relevance of an anti-doping programme that is concerned with protecting the integrity of an alleged natural athlete. ..."

Nakamura, K.-I., K. Takubo, et al. "Telomeric DNA length in cerebral gray and white matter is associated with longevity in individuals aged 70 years or older." Experimental Gerontology In Press, Corrected Proof."These data suggest that innate telomere lengths are maintained very well in the cerebrum, and are associated with longevity. Our study lends indispensable support to the hypothesis that longer telomeres protect the genome from instability (a major cause of carcinogenesis) and are beneficial for longevity. ..."

Pentimalli, F. (2007). "A pathway to complexity." Nat Rev Genet 8(8): 568-568. "Shifting from single-gene to pathway approaches when studying complex diseases enhances the disease-predictive power of association studies. ..."

Rivkees, S. A. (2007). ""The Newborn Screening Saves Lives Act"--four million calls for support!" J Pediatr Endocrinol Metab 20(4): 457-8.

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Sherwin, S. (2007). "Genetic enhancement, sports and relational autonomy." Sport, Ethics and Philosophy 1(2): 171 - 180. "This paper explores the question of what attitude we should take towards efforts to develop the technology required to allow genetic enhancement of individuals in order to improve performance in sports: specifically, should we (a) welcome such innovations, (b) resign ourselves to their inevitable appearance or (c) actively resist their development and widespread adoption? Much of the literature on this topic leans towards options (a) or (b). I argue against both (a) and (b) and appeal to the concept of relational autonomy in support of option (c). I argue that we should situate the debate as a question of social policy rather than simply a matter for individual choice. ..."

Tamburrini, C. M. (2007). "What's wrong with genetic inequality? The impact of genetic technology on elite sports and society." Sport, Ethics and Philosophy 1(2): 229 - 238. "I argue that the health care inequality that inevitably will follow from the adoption of genetic technology, while posing a challenge to provide as long as possible for genetic interventions for all, is hardly a reason to reject the new technology. In that case, we would have to reject any new medicine or medical technique that cannot be made available to all people at once. Finally, I also argue that the "enhanced new world" that would follow the introduction of genetic technology, even with the kind of inequality that might then arise, poses no serious threat either to elite sports or to society and should therefore be welcome. ..."

Tamburrini, C. M., auml, et al. (2007). "Transcending human limitations." Sport, Ethics and Philosophy 1(2): 113 - 118. ..."

Topol, E. J., S. S. Murray, et al. (2007). "The Genomics Gold Rush." JAMA 298(2): 218-221. ..."

Wolf, S. M. and J. P. Kahn (2007). "Genetic Testing and the Future of Disability Insurance: Ethics, Law Policy." The Journal of Law, Medicine &Ethics 35: 6-32. ..."

 

 

 

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