LogoThis Week in CGREAL

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

December 7 , 2007 


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


Center News

Jennifer Fishman and Nick King have moved on to the Biomedical Ethics Unit at McGill University, where they will continue to collaborate with CGREAL on research projects.  We wish them the best!

The Translating ELSI conference has garnered over 160 proposals from scholars in 22 different countries for presentations and panels on topics all across the "ELSI" spectrum!

CGREAL co-sponsorsed the Dec. 5 public forum “Eugenics 2007: Is the Customer Always Right?” with the CWRU Inamori Center and the Maltz Museum of Jewish Heritage.

CGREAL faculty and staff have had presentations at a number of recent conferences recently, including: ASBH, ASHG, GSA, the African Society for Human Genetics, and PRIM&R

 


Opportunities

 

NCI’s Epidemiology and Genetics Research Program (EGRP) is cosponsoring two Program Announcements (PAs) to stimulate Research Project Grants (R01) and Small Research Grants (R03) on the ethical, legal, and social implications (ELSI) of human genome research - New!

Contingencies of Genomics - Finding Roads into the Future

13 December, 2007 Utrecht, Netherlands

Call for Papers - New!

Ethical, Legal and Technological Aspects of Health Information Management

Due December 15

Special Issue of Studies in Ethics, Law, and Technology

Call for Papers - New!

A Foucault for the 21st Century: Governmentality,
Biopolitics and Discipline in the New Millennium

Due Dec 18

Boston, MA

Call for Papers

DNA, Race, and History New Jersey

Due Dec. 15

Call for Papers - New!

Subject, Self, and Soul:
Transdisciplinary Approaches to Personhood 

Madrid

Due Dec. 15

Call for Papers - New!

History, Philosophy, Sociology and
Anthropology of Science, Technology, and Medicine

Due Jan 1

Request for Proposal - New!

Profiling

Canadian Human Rights Commission

Due Jan 4

Call for applications

Law and Society Post-doctoral Fellowship

University of Wisconsin

Due January 5, 2008

Call for Papers

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

Due January 15, 2008

Call for Papers

The Method in Theoretical Bioethics Research

Due February 1, 2008

Call for Papers

Genetics, history and public understanding

Due February 1, 2008

Request for Proposal - New!

Presidential Research Initiative (PRI) (CWRU only)

Due February 4

Call for Papers - New!
Modern Medicines: New Perspectives in Pharmaceutical History

Madison, WI

Midwest Interdisciplinary Graduate Conference:  "Living Remains"
February 15-17, 2008

Ethics, Public Health and the Environment

February 21-24, 2008

San Antonio, TX

Call for Papers - New!

Special Issue on Science and the Courts

The University of Ottawa Law & Technology Journal

Call for Papers

Crossing Borders in the History of Technology

Victoria, B.C.

Due March 3, 2008

Genomics and Society: Setting the Agendas
Apr 17, 2008


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

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

Three Societies 2008 - Connecting Disciplines

July 6-8, 2008

Oxford UK

October 17-18, 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

Intelligent Bio-Systems stakes out new ground in the gene race a $5,000 genome by late next year "Not only is that a jaw-dropping reduction compared to today s costs, it potentially brings the Holy Grail of the $1,000 genome far closer than than even many optimistic forecasts. ..."

DNA Tests Find Branches but Few Roots (New York Times) "But as the number of test takers and companies has grown, so has the number of scientists or scholars like Mr. Gates who have questioned assertions that companies make about their tests. ..."  [Related: African DNA "The first company dedicated to offering both genetic testing and genealogical tracing services for African Americans, is being launched this month by Henry Louis Gates, Jr. ..." ]

Direct-to-consumer advertising for genetic tests concerns physicians and may mislead patients "The majority of DNA tests are home brews that are unregulated by the FDA ..." [Related: deCode "The company that has led in the discovery of genes that confer risk of common diseases is empowering individuals to explore their own genome ..." Rite Aid Stores in West Selling a Paternity Test Kit (New York Times) "It appears to be the first time a DNA test is being sold through a major pharmacy chain. ..." Genetic testing co. spurs privacy, ethical questions "Navigenics, a new company that offers genetic testing presents a privacy issue, according to patients' rights advocates. ..."]

New Home DNA Storage Option (DNA Direct ) "This latest offering from DNA Direct is the first home DNA storage that uses laboratory quality technology to preserve DNA in a medium that can be safely stored at room temperature, and easily reconstituted by any testing lab. ..."

PHG Foundation | US report calls for increased oversight of genetic testing "The enquiry found that current oversight of genetic testing in the US is patchy, provided by different government agencies, professional associations, health insurers and other groups (or not at all) for different sorts of test. ..."

Targeting 'black' Americans (News & Observer) "Although extracting DNA information seems like a cut-and-dried scientific process aimed at improving health, among other things, it is so closely tied to the complicated issue of race in this country that it seems impossible to separate the two. ..." [Related: DNA advances fuel racism fears - UPI.com "New developments in genetics are advancing medicine, but some scientists and advocates fear they could be misinterpreted as support for racist theories. ..." In DNA era, new worries about prejudice - International Herald Tribune "Yet some social critics fear they may also be giving long-discredited racial prejudices a new potency. ..."]

What My Genome Says About Me (Wired) "I had my genome scanned by Navigenics and 23andMe. Here's what I learned. ..." [Related: Google-backed 23andMe offers $999 DNA test (USATODAY) ... Personal genetics | Within spitting distance? (Economist) "The era of personalised medicine takes a step closer. But it is not quite here yet ..."]

Evolutionary comparison finds new human genes "Using supercomputers to compare portions of the human genome with those of other mammals, researchers at Cornell have discovered some 300 previously unidentified human genes, and found extensions of several hundred genes already known. ..."

Genetic differences point to ethnic and racial disparities in colorectal cancer risk "An analysis of 26 studiesshows that some of these disparities might be explained by distinct patterns of genetic inheritance. ..." [Related: New perspectives on health disparities in breast cancer research "The question remains: how, exactly, do social disadvantages, genetics, race and culture add to the disparities faced by so many groups of women? ..."]

GenoTrim by Salugen "... the world's first DNA-customized nutritional supplement for optimal weight..."

Human clones: New U.N. analysis lays out world's choices "Report says ban on human reproductive cloning, coupled with restricted therapeutic research, is global compromise most likely to succeed ..."

Humans Carry More Bacterial Cells than Human Ones: Scientific American "You are more bacteria than you are you, according to the latest body census ..."

Aetna To Offer Access To Confidential Telephonic Cancer Genetic Counseling To Health Plan Members "Genetic counseling helps individuals and their doctors assess their risk for cancer, appropriately order and interpret genetic tests, and make informed screening and preventive decisions ..."

Medical research participants should understand that research is not the same as treatment "Some research participants do not appreciate important differences between medical research and treatment ..."

Protection of Human Subjects: Categories of Research That May Be Reviewed by the Institutional Review Board Through an Expedited Review Procedure "The Office for Human Research Protections (OHRP) is requesting written comments on a proposed amendment to item 5 of the categories of research that may be reviewed by the institutional review board (IRB) through an expedited review procedure ..."

Reprogramming the debate: stem-cell finding alters ethical controversy "When University of Wisconsin-Madison researchers succeeded in reprogramming skin cells to behave like embryonic stem cells, they also began to redefine the political and ethical dynamics of the stem-cell debate ..."

Scientists indicate HIPAA privacy rule has had negative influence on health research "About two-thirds of clinical scientists surveyed report that the HIPAA Privacy Rule for patients has had a negative influence on the conduct of health research, often adding uncertainty, cost and delays ..."

Concern over menstrual blood bank (BBC ) "Experts have expressed concern over the launch by a US company of a service for women to store their own menstrual blood. ..."

How Science Is Rewriting the Book on Genes (Washington Post)l "Graduation day comes and the new doctors assemble to get their diplomas. The dean gazes out and announces sheepishly: "I'm sorry to tell you that half of what we taught you is wrong. The problem is, we don't know which half."

Islam to co-opt genetic issues into everyday life (Gulfnews) "Recommendations dealing with abortion, pre-marital testing and marriage between relatives, coming out of a conference on genetics in the Arab world, may become a blueprint for Muslim nations ..."

A natural fear (Ottawa Citizen) "When we consider the amazing array of potential methods for combining human and animal DNA, we should heed our 'yuck' reaction ..."

Too much privacy? U.S. law makes research harder (Reuters) "U.S. privacy laws designed to protect patients' health information have had the unintended effect of impeding scientific research,. ..." [Related: NY Court of Appeals Allows Defendants to Privately Question Plaintiffs' Doctors "So how does the court reconcile the privacy that HIPAA affords with its determination to allow private interviews? While some medical conditions are certainly waived by bringing suit, others may not be. ..."]

Twins on a Medical Odyssey After a Diagnosis of Diabetes (New York Times)

"One would learn she has Type 1 diabetes; the other would become the first person enrolled in a multinational study aimed at delaying or preventing the disease in some patients. ..."

X games for scientists offers $10m top prize (The Boston Globe) "Competition set up to find quicker, cheaper way to analyze DNA for new field of personalized medicine ..." [Related: Would cash prizes promote cheap drugs? New Scientist "But while individual prizes can encourage research in specific areas, they cannot address the wider problem of high drug prices. ..."]

Gene Therapy Did Not Kill Patient (ScienceNOW) "New tests indicate that the therapy played no role in the death. The decision comes as a relief to gene-therapy researchers who had worried about a potential new setback for their field. ..." [Related: Gene therapy trial to restart (Nature News) "FDA lifts ban on trial after investigating death. ..."]

Genetic Nondiscrimination Bill Stalled in Senate (Wired) "With several private companies launching businesses to provide customers with unprecedented access to their genomes' secrets, legislation protecting people from genetic discrimination is more timely than ever. . ..." [Related: Threats to Your Genetic Privacy (US News and World Report) "Yet the long-awaited GINA, the Genetic Information Nondiscrimination Act, languishes in lawmaker limbo. ..."]

'Intelligence genes' reveal their complexity (New Scientist) "Something as subtle and complex as intelligence was never going to be pinned on just a handful of genes, as a huge trawl across the human genome seems to confirm. ..."

It s Time for the "Times" to Cut the Gene Hype (Bioethics Forum)"But her awareness of those problems was swamped by her enthusiasm, which compromised her ability to tell the real story about genetics research today: the more geneticists learn about DNA, the more they understand that the simple story they were telling just 10 years ago needs radical revision. ..."

Screening embryos for aneuploidy stirs controversy at reproductive medicine meeting (Genetics & Public Policy Center) "A practice committee opinion released concluded that evidence does not support the use of preimplantation genetic screening (PGS) for any indication. ..." [Related: The Politics of Genetics & Reproductive Technology "You are invited to participate in an ESRC funded research project that examines attitudes towards 'The Politics of Genetics and Reproductive Technology' ..."]

Longevity Industry (Portfolio) "The search for immortality or at least the exponential extension of human life is hardly new. But now the hedge fund set has joined the quest, and some big money and names are betting on a "cure" for aging. ..." [Related: No One Wants to Live Forever (Esquire) "But we would like to be young for as long as we live. Andy Dillin and his team at the Salk Institute are making that dream come true. ..." Antidepressant found to extend lifespan in C. elegans "Intriguingly, the drug may act by mimicking the effects of caloric restriction ..."]

A molecular map for aging in mice "Researchers have used gene arrays to identify genes whose activity changes with age in 16 different mouse tissues. ..." [Related: Fighting diseases of aging by wasting energy " When you make the mitochondria inefficient, the muscles burn more calories, a metabolic increase that could be at least a partial substitute for exercise ..." Stanford researchers produce short-term reversal of skin aging in mice ... Could We Live Forever? Or Even Come Close?(CBS News) "Technology, Along With Lifestyle Changes, May Extend Our Already-Increasing Lifespans ..." Age research: A new angle on 'old' (Nature News) "Are ageing and disease two sides of the same coin? ..."]

 


Genetics in the Literature

New Journal: Studies in Ethics, Law, and Technology "Studies in Ethics, Law, and Technology is an interdisciplinary peer-reviewed journal that focuses on the ethical and legal issues that arise from emerging technologies. At the intersection of theory and practice the journal combines conceptual analysis and normative deliberations in order to shape academic debates and policy decisions. ..."

New Journal: Public Health Ethics "Public Health Ethics (PHE) is a peer-reviewed international journal with a focus on the systematic analysis of the moral problems that arise in public health and preventive medicine. ..."

Ball, E. (2007). The genetic strand : exploring a family history through DNA. New York, Simon & Schuster.

"But the account's drama comes from a finding that suggests a Native American ancestor in his family tree. Another lab contradicts this evidence, and the error affects Ball profoundly, leading him to rail about the fallibility of science, the dangers of making science the new religion and scientists, specifically molecular biologists, the new priests. Forensic DNA testing has become hot (exemplified by Henry Louis Gates Jr.'s televised testing results), and as Ball's own emotions show, is also playing into Americans' sense of identity. ..."

(2007). "Risky business." Nat Genet 39(12): 1415-1415.

Anderson, M. S., B. C. Martinson, et al. (2007). "Normative Dissonance in Science: Results from a National Survey of U.S. Scientists." Journal of Empirical Research on Human Research Ethics 2(4): 3-14.

Anisimova, M. and D. A. Liberles (2007). "The quest for natural selection in the age of comparative genomics." Heredity 99(6): 567-579.

Antes, A. L., R. P. Brown, et al. (2007). "Personality and Ethical Decision-Making in Research: The Role of Perceptions of Self and Others." Journal of Empirical Research on Human Research Ethics 2(4): 15-34.

Bamshad, M. a. and S. L. b. Guthery (2007). "Race, genetics and medicine: does the color of a leopard's spots matter?" Current Opinion in Pediatrics 19(6): 613-618.

"Geographical origin and explicit genetic data are more accurate predictors of ancestry than race. Using such alternatives is an important step toward identifying genetic risk variants for common pediatric diseases and personalizing disease prevention and intervention strategies. ..."

Bhardwaj, M. (2007). "From farm to pharma: public health challenges of nutrigenomics." Personalized Medicine 4(4): 423-430.

Bhattacharya, K. (2007). "Consenting to the Consent Form: What Are the Fixed and Fluid Understandings Between the Researcher and the Researched?" Qualitative Inquiry 13(8): 1095-1115.

"If the understanding of the consent form and its meaning is contingent and permanently deferred, then how does the relationship between the researcher and the researched inform de/colonizing methodologies? Using a vignette, the author explores how member checks and re-presentation are affected by the intersection of colonizing and decolonizing epistemologies within the current context of troubled "scientific" inquiry. She also discusses how a fluid process of consenting, insider-outsider kinship relations between the researcher and the researched, and the inadequacy of Western structures of inquiry open up alternate spaces of discussion for scientific inquiry that is responsive to the space of blurred relationships, messy methodology, and collaborative designs often present in qualitative research. ..."

Borenstein, J. (2007). "Shaping our future: the implications of genetic enhancement." Hum Reprod Genet Ethics 13(2): 4-15.

Borry, P., T. Goffin, et al. (2007). "Attitudes regarding carrier testing in incompetent children: a survey of European clinical geneticists." Eur J Hum Genet 15(12): 1211-1217.

Boser, S. (2007). "Power, Ethics, and the IRB: Dissonance Over Human Participant Review of Participatory Research." Qualitative Inquiry 13(8): 1060-1074.

"This article argues that these differing assumptions regarding power contribute to the challenges participatory researchers experience in obtaining IRB approval. Furthermore, the application of the conventional IRB framework in reviewing the ethics of participatory inquiry can itself harm human participants in such projects by limiting the participants' field of choices. This article addresses these challenges, presenting a framework that draws on the literature on power to consider the ethical questions involved in participatory research partnerships. It also describes some ways in which power imbalance might manifest within a participatory research project, and between a project and an IRB, and offers specific strategies for addressing this. ..."

Breese, P. E., W. J. Burman, et al. (2007). "Education Level, Primary Language, and Comprehension of the Informed Consent Process." Journal of Empirical Research on Human Research Ethics 2(4): 69-79.

Buchanan, D. R. (2007). "Autonomy, Paternalism, and Justice: Ethical Priorities in Public Health." Am J Public Health: AJPH.2007.110361.

"On empirical and ethical grounds, public health should seek instead to expand individual autonomy to improve population health. To promote autonomy, the field should redirect current efforts toward clarifying principles of justice.Although public health's most highly visible stance is associated with an egalitarian conception of "social justice," it is imperative that public health professionals address gaping divisions in public understandings of justice. I present recommendations for initiating this process. ..."

Carline, J. D., P. S. O'Sullivan, et al. (2007). "Crafting Successful Relationships with the IRB." Acad Med 82(10 Suppl): S57-60.

"The authors conducted interviews with medical school representatives about factors leading to relationships in which all parties feel that their concerns are being met, subjects are appropriately protected, and that the progress of evaluation or research activities is not unnecessarily inhibited. Successful relationships require efforts at education of the IRB and the researchers. All institutions acknowledged the need to establish and maintain good communication. Some schools developed structures or procedures that resulted in more rapid review and increased satisfaction that interests of all parties were protected. A relationship must be crafted between medical education researchers and the IRB. ..."

Carolyn, C. (2007). "Getting to personalized cancer medicine." Cancer 110(8): 1641-1643.

Catania, J. A., L. E. Wolf, et al. (2007). "Research Participants' Perceptions of the Certificate of Confidentiality's Assurances and Limitations." Journal of Empirical Research on Human Research Ethics 2(4): 53-59.

 

Chung, W. K. (2007). "Implementation of Genetics to Personalize Medicine." Gender Medicine 4(3): 248-265.

"Several areas of medicine have begun to incorporate genetics into clinical practice. Molecular genetic tests are, and will increasingly become, available. However, there are many barriers to implementation, including the cost of testing, the genetic literacy of patients and health care providers, and concerns about genetic discrimination. Genetics and genomics will be increasingly utilized in every field of medicine; however, health care providers and patients must have realistic expectations about its predictive power and current limitations. ..."

Compton, C. (2007). "The biospecimen as the key to personalizing medicine." Personalized Medicine 4(4): 385-387.

de Grey, A. D. N. J. "The Need to Debalkanize Gerontology: A Case Study." Rejuvenation Research 0(0): 1-4.

de Wert, G., I. Liebaers, et al. (2007). "The Future (R)evolution of Preimplantation Genetic Diagnosis/Human Leukocyte Antigen Testing: Ethical Reflections." Stem Cells 25(9): 2167-2172.

"From an ethical point of view, the controversial issue is that this procedure creates embryos purely for instrumental use. However, given the dominant view that the preimplantation embryo has only limited moral value, this alternative may be as morally justified . ..."

Easley, C. E. P. R. N. and C. E. P. R. N. Allen "A Critical Intersection: Human Rights, Public Health Nursing, and Nursing Ethics." SO - Advances in Nursing Science Health, Human Rights, and Poverty. October/December 2007;30(4):367-382.

"Intersections of human rights, ethics, and public health nursing practice will be discussed in light of the assertion of health as a human right and described using the issues of HIV/AIDS and genetics/genomics.

..."

Epstein, R. A. (2007). "The Social Response To Genetic Conditions: Beware Of The Antidiscrimination Law." Health Aff 26(5): 1249-1252.

"Forcing employers to bear the cost of achieving parity between genetically high-risk and low-risk workers will create labor-market distortions that will inevitably shrink insurance coverage for vulnerable populations with genetic abnormalities along with everyone else. A better approach would be to create a politically transparent system of government-provided subsidies. ..."

Fargher, E. A., C. Eddy, et al. (2007). "Patients and healthcare professionals views on pharmacogenetic testing and its future delivery in the NHS." Pharmacogenomics 8(11): 1511-1519.

Feeley, M. M. (2007). "Legality, Social Research, and the Challenge of Institutional Review Boards." Law & Society Review 41(4): 757-776.

Finan, J. E. and R. Y. Zhao (2007). "From molecular diagnostics to personalized testing." Pharmacogenomics 8(1): 85-99.

Green, N. S., P. Rinaldo, et al. (2007). "Committee Report: advancing the current recommended panel of conditions for newborn screening." Genet Med 9(11): 792-6.

 

Havens, B., S. Wadhwa, et al. (2007). "Orthodontics in the year 2047: genetically driven treatment plans." J Clin Orthod 41(9): 549-56; quiz 523.

Helgesson, G., S. Eriksson, et al. (2007;:). "Limited relevance of the right not to know--reflections on a screening study. ." Account Res 14: 197-209.

"This article argues against giving the right not to know such a prominent position. It does so by questioning the ethical relevance of the concept for both theoretical and empirical reasons. The main focus of the article is on empirical data from a prospective population screeningfor Type I diabetes. Data indicate that research participants are not as autonomous as is generally assumed by the defenders of the right not to know. ..."

Hindmarsh, R. and A. e. Abu-Bakar (2007). "Balancing benefits of human genetic research against civic concerns: Essentially Yours and beyond – the case of Australia." Personalized Medicine 4(4): 497-505.

Jones, S. (2007). "Horizontal gene transfer: Unclonable, that's what you are!" Nat Rev Genet 8(12): 906-907.

Katz, J. (2007). "Toward a Natural History of Ethical Censorship." Law & Society Review 41(4): 797-810.

Kline, A. D. (2007). "Giftedness, humility and genetic enhancement." Hum Reprod Genet Ethics 13(2): 16-21.

Koro-Ljungberg, M., M. Gemignani, et al. (2007). "The Technologies of Normalization and Self: Thinking About IRBs and Extrinsic Research Ethics With Foucault." Qualitative Inquiry 13(8): 1075-1094.

"In this article, the authors discuss the technologies of normalization and self in relation to ethics and the problematization of extrinsic research ethics. They argue that institutional review boards (IRBs) and other similar institutional mechanisms promote extrinsic forms of ethics that are exemplified through institutionalized structures such as (a) the Belmont Report, (b) IRB protocol, (c) informed consent, and (d) localized interpretations of IRB rules and regulations. However, at the same time, institutional normalization enables researchers and participants to construct themselves as ethically responsible participants through resistance and critical reflection. ..."

Lorence, D. and R. Churchill (2007). "A study of the web as DTC drug marketing agent." J Med Syst 31(6): 551-6.

"This study serves as an exploratory technology assessment that examines the prevalence of web-based DTC for a popular prescription drug and the impact on healthcare consumers. ..."

McNamee, M. (2007). "Doping in Sports: Old Problem, New Faces." Sport, Ethics and Philosophy 1(3): 263 - 265.

Murray, S. J. (2007). "Care and the self: biotechnology, reproduction, and the good life." Philos Ethics Humanit Med 2: 6.

"This paper explores a novel philosophy of ethical care in the face of burgeoning biomedical technologies. I respond to a serious challenge facing traditional bioethics with its roots in analytic philosophy. I argue that the theoretical relevance and practical application of mainstream bioethics is increasingly under strain. . ..."

Naik, R. K., M. E. Borrego, et al. (2007). "Pharmacy students' knowledge, attitudes, and evaluation of direct-to-consumer advertising." Am J Pharm Educ 71(5): 86.

"OBJECTIVES: To assess pharmacy students' knowledge, attitudes, and evaluation of direct-to-consumer advertising (DTCA). Students had an overall negative attitude toward television and print advertisements using the professional labeling format but an overall positive attitude toward the print advertisement using the patient labeling format. Lectures discussing DTC advertising should be included in the pharmacy curriculum. ..."

Ness, R. B. and S. o. E. for the Joint Policy Committee (2007). "Influence of the HIPAA Privacy Rule on Health Research." JAMA 298(18): 2164-2170.

"A total of 875 (67.8%) epidemiologists reported that the HIPAA Privacy Rule has made research more difficult at a level of 4 to 5 on a Likert scale, in which 5 indicates a great deal of added cost and time to study completion. A total of 684 (52.1%) of respondents identified a "most affected" protocol. Respondents indicated that the proportion of institutional review board applications in which the Privacy Rule had a negative influence on human subjects (participants) protection was significantly greater than the proportion in which it had a positive influence (P < .001). Conclusion In this national survey of clinical scientists, only a quarter perceived that the rule has enhanced participants' confidentiality and privacy, whereas the HIPAA Privacy Rule was perceived to have a substantial, negative influence on the conduct of human subjects health research, often adding uncertainty, cost, and delay. ..."

O'Connor, M. K., F. E. Netting, et al. (2008). "Grounded Theory: Managing the Challenge for Those Facing Institutional Review Board Oversight." Qualitative Inquiry 14(1): 28-45.

"The authors report the results of a content analysis of a sampling of dissertation abstracts claiming to use grounded theory. Results reveal the need to clarify standards for different types of grounded theory research to help those facing IRB oversight. The authors assert that there are two useful sets of standards that should be applied to the assessment of the quality of a grounded theory design and researchers should not confuse the two. ..."

Olshansky, S. J., D. Perry, et al. (2007). "Pursuing the Longevity Dividend: Scientific Goals for an Aging World." Ann NY Acad Sci 1114(1): 11-13.

"We contend that the social, economic, and health benefits that would result from such advances may be thought of as "longevity dividends," and that they should be aggressively pursued as the new approach to health promotion and disease prevention in the 21st century. The time has arrived for governments and national and international healthcare organizations to make research into healthy aging a major research priority. ..."

Ouzounian, M., D. S. Lee, et al. (2007). "Predict, prevent and personalize: Genomic and proteomic approaches to cardiovascular medicine." Can J Cardiol 23 Suppl A: 28A-33A.

"The present paper reviews the potential contributions of genomic and proteomic approaches in developing a more personalized approach to cardiovascular medicine. ..."

Patterson, d. (2008). "Research Ethics Boards as Spaces of Marginalization: A Canadian Story." 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. . ..."

Prainsack, B. and D. Gurwitz (2007). "'Private fears in public places?&#x2019; Ethical and regulatory concerns regarding human genomic databases." Personalized Medicine 4(4): 447-452.

Sadeghi, M. (2007). "Islamic perspectives on human cloning." Hum Reprod Genet Ethics 13(2): 32-40.

"The present paper seeks to assess various views from Islamic jurists relating to human cloning, which is one of the controversial topics in the recent past. With due attention to the fact that the reasons behind the prohibition of abortion only restrict the destruction of human embryos in their post-implantation stages, human cloning for biomedical research and exploitation of stem cells from cloned embryos at the blastocyst stage for therapeutic purposes would be acceptable. ..."

Sgaier, S. K., P. Jha, et al. (2007). "PUBLIC HEALTH: Biobanks in Developing Countries: Needs and Feasibility." Science 318(5853): 1074-1075.

Sharma, S. and G. Kaur (2007). "Intermittent Dietary Restriction as a Practical Intervention in Aging." Ann NY Acad Sci 1114(1): 419-427.

"The present study shows that DR initiated in late adulthood confers beneficial effects, such as attenuation of oxidative stress, enhanced expression of HSP-70, neural plasticity markers NCAM, and PSA-NCAM, and reduced levels of GFAP. ..."

Sieber, J. E. (2007). "Institutional Introspection." Journal of Empirical Research on Human Research Ethics 2(4): 1-2.

Smith, A. W., A. L. Dougall, et al. (2007). "Psychological distress and quality of life associated with genetic testing for breast cancer risk." Psychooncology.

"Results suggest that genetic testing for BRCA1/2 does not increase distress or have deleterious effects on quality of life over the long term. However, sub-groups of women may report more distress over time. These data indicate the need for more targeted counseling to individuals who report high levels of distress when considering genetic testing. ..."

Stark, L. (2007). "Victims in Our Own Minds? IRBs in Myth and Practice." Law & Society Review 41(4): 777-786.

Staton, A. D., A. W. Kurian, et al. (2007). "Cancer risk reduction and reproductive concerns in female BRCA1/2 mutation carriers." Fam Cancer.

"Although they expressed substantial concern about transmitting BRCA1/2 mutations to their children, only a minority of the high-risk women surveyed were likely to consider currently available assisted reproductive strategies. ..."

Sullivan, D. M. and S. A. Salladay (2007). "Gene therapy: restoring health or playing God?" J Christ Nurs 24(4): 199-205.

Swindell, W. R. (2007). "Gene expression profiling of long-lived dwarf mice: longevity-associated genes and relationships with diet, gender and aging." BMC Genomics 8.

Szabo, L. M. and T. J. Britt (2007). "Guide to Researching Human Research Subjects Laws in West Africa." Journal of Empirical Research on Human Research Ethics 2(4): 93-105.

Tutton, R. (2007). "Banking expectations: the promises and problems of biobanks." Personalized Medicine 4(4): 463-469.

Vincent, J. A. (2007). "Science and imagery in the 'war on old age'." Ageing & Society 27(6): 941-961.

"Several professional groups present themselves as 'waging war' on old age. They construct old age as a naturalised, self-evidently negative, biological phenomenon, which must be attacked and defeated. These groups make different claims to technical expertise and their ability to control natural phenomena, and use different weapons to defeat ageing. ..."

Wall, T. L., K. Schoedel, et al. (2007). "Differences in pharmacogenetics of nicotine and alcohol metabolism: Review and recommendations for future research." Nicotine Tob Res 9 Suppl 3: 459-74.

 

Warnock, M. (2007). "The ethical regulation of science." Nature 450(7170): 615-615.

"Occasionally science makes procedures possible that are so radical that those at the interface between science and politics are called on to define moral standards for society. ..."

Weir, B. A., M. S. Woo, et al. (2007). "Characterizing the cancer genome in lung adenocarcinoma." Nature advanced online publication.

Williams, M. S. (2007). "Insurance coverage for pharmacogenomic testing in the USA." Personalized Medicine 4(4): 479-487.

Williamson, J., J. S. Goldman, et al. (2007). "Genetic research and genetic testing in Alzheimer's disease: a view from the bridge." Nat Clin Pract Neurol 3(7): 356-7.

Williamson, L., M. Fox, et al. (2007). "The Regulation of Xenotransplantation in the United Kingdom After UKXIRA: Legal and Ethical Issues." Journal of Law & Society 34(4): 441-464.

" In this article we seek to problematize this new regulatory framework, arguing that specialist expertise and national oversight are necessary components of an adequate regulatory framework for a biotechnology which poses new orders of risk, challenges the adequacy of traditional understandings of autonomy and consent, and raises significant animal welfare concerns. We argue for a more considered and holistic approach, based on adequate consultation, to regulating biotechnological developments in the United Kingdom ..."

Zeiler, K. (2007). "Complexities in reproductive choice: medical professionals' attitudes to and experiences of pre-implantation genetic diagnosis." Hum Fertil (Camb) 10(3): 165-74.

"Interviewees emphasized, among other things, the importance of choice provision. Interviewees also told stories that indicated the many ways through which choice was feared to be hampered - or was hampered. A similar emphasis on the importance of PGD as one more alternative to choose between, for 'high-risk' couples, is not found in studies on the experiences, attitudes and views of potential, or actual, users of PGD. ..."

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