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Case Western Reserve University

This month in cgreal - january 2011

 

 

 

 

CGREAL News

 

  • CGREAL is pleased to announce its 2011 seed grant program. All Case and Cleveland Clinic faculty who are interested in developing research projects on ethical, legal, and social issues (ELSI) in the design and conduct of human genetic research, the translation of research results into clinical medicine, public health, and health policy needs related to genetics are eligible.  These grants are designed to support exploratory efforts towards the development of larger scholarly projects or lines of research related to CGREAL’s mission.

Criteria for evaluation will focus on the potential for expanding and enriching the range of perspectives being brought to genetic research ethics and law at CGREAL and evidence of interdisciplinary collaboration. Preference will be given to projects that are deemed likely to foster further research able to attract outside support.

Requests may be made for up to $5,000 per year.  Funds may not be used for faculty salary support.  Applications are limited to Case Western University and Cleveland Clinic faculty at any rank/level. Applications will be reviewed on a rolling basis.  We anticipate funding the first round of projects in January 2011. To apply, please send a statement of project goals, resource needs, and a preliminary project timeline to Richard Sharp (sharpr3@ccf.org or 216-445-1257) or Patricia Marshall (patricia.marshall@case.edu or 216-368-2502). Please direct any questions to Richard Sharp (sharpr3@ccf.org or 216-445-1257) or Patricia Marshall (patricia.marshall@case.edu or 216-368-2502.

  • The next CGREAL Spotlight will take place Wednesday, January 26, from 10-11:30 am, at CWRU School of Medicine, Room T-503. The 4th CGREAL Spotlight will feature Sharona Hoffman, speaking on "E-Health Hazards:  Provider Liability and Electronic Health Records". The CGREAL Spotlight seminars focus on ongoing CGREAL research, new research project ideas, and current issues of interest to the ELSI community.
  • The next CGREAL Reading Group will take place Wednesday, February 23, from 5-7 pm.

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New Publications & Presentations

CGREAL members disseminating their work

 

Michelle McGowan published “Participation in investigational fertility preservation research: a feminist research ethics approach” in T.K. Woodruff, L. Zoloth, L. Campo-Engelstein, & S. Rodriguez (Eds.), Oncofertility: Reflections from the Humanities and Social Sciences. Cancer Treatment and Research, 2010, Volume 156, Part 3, 209-221.New York: Springer.

Maxwell Mehlman's article "Modern Eugenics and the Law" recently was published in Paul A. Lombardo (Ed.), A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era, 2010, Indiana University Press.

Rich Sharp and Michelle McGowan are among the authors of “Moral Attitudes and Beliefs among Couples Pursuing PGD for Sex Selection”,  an article currently in press for the journal Reproductive Biomedicine Online.

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Opportunities

Calls for Abstracts, Conferences, and Positions

 

Calls for Abstracts

Upcoming Conferences

 

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Genetics and Ethics in the Literature

Websites, Articles, and Resources

There are a number of excellent sources for comprehensive literature reviews on genetics and ethics. 

In particular, I recommend:

Recent articles of note:

Beskow, L. M. and W. Burke "Offering individual genetic research results: context matters." Sci Transl Med 2(38): 38cm20.

Bloss, C. S., N. J. Schork, et al. "Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk." New England Journal of Medicine 0(0).

Boenink, M. and S. van der Burg "Informed decision making about predictive DNA tests: arguments for more public visibility of personal deliberations about the good life." Med Health Care Philos 13(2): 127-38.

Bredenoord, A. L., H. Y. Kroes, et al. "Disclosure of individual genetic data to research participants: the debate reconsidered." Trends in Genetics..

Brief, E. and J. Illes "Tangles of Neurogenetics, Neuroethics, and Culture." Neuron 68(2): 174-177.

Burke, W., H. Burton, et al. "Extending the reach of public health genomics: What should be the agenda for public health in an era of genome-based and personalized medicine?" Genetics in Medicine 12(12): 785-791

Cameron, C. "Regulating human enhancement technologies: the role of the law and human dignity." J Law Med 17(5): 807-15.

Cho, M. and M. Wolpert "Not yet in sequence: Clinical, technical, ethical questions linger over personal genomics." Mod Healthc 40(47): 24.

Clarke, A. J. and D. N. Cooper "GWAS: heritability missing in action[quest]." Eur J Hum Genet 18(8): 859-861.

Dancyger, C., J. A. Smith, et al. (2010). "Comparing family members/' motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: a qualitative analysis." Eur J Hum Genet 18(12): 1289-1295.

Elger, B. S., K. Michaud, et al. "Sudden death: ethical and legal problems of post-mortem forensic genetic testing for hereditary cardiac diseases." Clin Genet 77(3): 287-92.

Erez, A., K. Plunkett, et al. "The right to ignore genetic status of late onset genetic disease in the genomic era; Prenatal testing for Huntington disease as a paradigm." American Journal of Medical Genetics Part A 152A(7): 1774-1780.

Fabsitz, R. R., A. McGuire, et al. "Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants." Circulation: Cardiovascular Genetics 3(6): 574-580.

Feldman, J. "Institutional Review Boards and Protecting Human Research Participants." JAMA: The Journal of the American Medical Association 304(23): 2591-2592.

Fox, D. "Retracing liberalism and remaking nature: designer children, research embryos, and featherless chickens." Bioethics 24(4): 170-8.

Freedman, A. N., L. B. Sansbury, et al. (2010). "Cancer Pharmacogenomics and Pharmacoepidemiology: Setting a Research Agenda to Accelerate Translation." J Natl Cancer Inst.

Godard, B., V. Ozdemir, et al. "Ethnocultural community leaders' views and perceptions on biobanks and population specific genomic research: a qualitative research study." Public Underst Sci 19(4): 469-85.

Goldstein, L. "Why Scientific Details Are Important When Novel Technologies Encounter Law, Politics, and Ethics." The Journal of Law, Medicine & Ethics 38(2): 204-211.

Goodman, M. S., J. J. Dias, et al. "Increasing Research Literacy in Minority Communities: CARES Fellows Training Program." Journal of Empirical Research on Human Research Ethics 5(4): 33-41.

Guillemin, M., L. Gillam, et al. "Resources Employed by Health Researchers to Ensure Ethical Research Practice." Journal of Empirical Research on Human Research Ethics 5(2): 21-34.

Halberstein, R. A. "Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean. by Ian Whitmarsh." Medical Anthropology Quarterly 24(4): 569-570.

Hammond, J. "Genetic engineering to avoid genetic neglect: from chance to responsibility." Bioethics 24(4): 160-9.

Hawkins, A. "Biobanks: Importance, Implications and Opportunities for Genetic Counselors." Journal of Genetic Counseling 19(5): 423-429.

Heimer, C. A. and J. Petty "Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research." Annual Review of Law and Social Science 6(1): 601-626.

Hens, K., H. N. Herman, et al. "The Use Of Diagnostic Collections Of Dna For Research: Interviews At The Eight Belgian Centres For Human Genetics." Eur J Med Genet.

Hens, K., H. Nys, et al. "The return of individual research findings in paediatric genetic research." Journal of Medical Ethics.

Hoop, J. G., M. I. Lapid, et al. "Clinical and ethical considerations in pharmacogenetic testing: views of physicians in 3 "early adopting" departments of psychiatry." J Clin Psychiatry 71(6): 745-53.

Howell, R. R. and M. A. Lloyd-Puryear "From developing guidelines to implementing legislation: actions of the US Advisory Committee on Heritable Disorders in Newborns and Children toward advancing and improving newborn screening." Semin Perinatol 34(2): 121-4.

Johnsson, L., G. Helgesson, et al. "Hypothetical and factual willingness to participate in biobank research." Eur J Hum Genet.

Jordan, B. R. and D. F. C. Tsai "Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization—the case of genetic testing for autism." Journal of Medical Ethics 36(7): 440-444.

Koepsell, D. "On genies and bottles: scientists' moral responsibility and dangerous technology R&D." Sci Eng Ethics 16(1): 119-33.

Levenson, D. "Is there a better way to get consent for bloodspot use?" American Journal of Medical Genetics Part A 152A(8): fm vii-fm viii.

Ludman, E. J., S. M. Fullerton, et al. "Glad you asked: participants' opinions of re-consent for dbGap data submission." J Empir Res Hum Res Ethics 5(3): 9-16.

Mardis, E. (2010). "The $1,000 genome, the $100,000 analysis?" Genome Medicine 2(11): 84.

Marsh, V., D. Kamuya, et al. "Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya." BMC Medical Ethics 11(1): 13.

Marsh, V. M., D. M. Kamuya, et al. "Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya." BMC Med Ethics 11(1): 13.

May, M. "Family data underused to track disease." Nat Med 16(7): 732-732.

McConnell, T. "Genetic Enhancement, Human Nature, and Rights." Journal of Medicine and Philosophy 35(4): 415-428.

Meacham, M. C., H. Starks, et al. "Researcher perspectives on disclosure of incidental findings in genetic research." J Empir Res Hum Res Ethics 5(3): 31-41.

Mitchell, R. "Blood banks, biobanks, and the ethics of donation." Transfusion 50(9): 1866-1869.

O/'Kane, D. "An Outsider/'s Viewpoint: The FDA Should Regulate Clinical Pharmacogenetic/Genomic Tests, But." Clin Pharmacol Ther 88(6): 746-748.

Polzer, J. "Seeing and knowing in twenty-first century genetic medicine: the clinical pedigree as epistemological tool and hybrid risk technique." New Genetics & Society 29(2).

Povey, S., A. I. Al Aqeel, et al. (2010). "Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases (LSDBs)." Human Mutation 31(11): 1179-1184.

Roberts, J. S., D. I. Shalowitz, et al. "Returning individual research results: development of a cancer genetics education and risk communication protocol." J Empir Res Hum Res Ethics 5(3): 17-30.

Rothwell, E., R. Anderson, et al. "Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research." Policy Polit Nurs Pract 11(1): 5-12.

Royal, C. D., J. Novembre, et al. "Inferring Genetic Ancestry: Opportunities, Challenges, and Implications." The American Journal of Human Genetics 86(5): 661-673.

Sharp, R. R. and D. C. Landy "The financing of clinical genetics research by disease advocacy organizations: A review of funding disclosures in biomedical journals." American Journal of Medical Genetics, Part A 152 A(12): 3051-3056.

Sleeboom-Faulkner, M. E. "Genetic testing, governance, and the family in the People's Republic of China." Soc Sci Med.

Stol, Y. H., F. H. Menko, et al. "Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists." Journal of Medical Ethics 36(7): 391-395.

Udesky, L. (2010). "The ethics of direct-to-consumer genetic testing." The Lancet 376(9750): 1377-1378.

Veenstra, D. L., J. A. Roth, et al. (2010). "A formal risk-benefit framework for genomic tests: Facilitating the appropriate translation of genomics into clinical practice." Genetics in Medicine 12(11): 686-693

Vernillo, A. T. and P. R. Wolpe "Property and privacy paradigms of "marketable spit": an ethical and legal counterpart to blood?" J Can Dent Assoc 76: a51.

Wagner, J. K. "Interpreting the implications of DNA ancestry tests." Perspect Biol Med 53(2): 231-48.

Willyard, C. "Tech teams try to curate genetic data for future use." Nat Med 16(7): 733-733.

Wolf, L. E. "The Research Ethics Committee Is Not the Enemy: Oversight of Community-Based Participatory Research." Journal of Empirical Research on Human Research Ethics 5(4): 77-86.

Wolff, K., W. Brun, et al. "How to Handle Genetic Information: A Comparison of Attitudes among Patients and the General Population." Public Health Genomics.

Woolley, M. "Advocacy groups and the economic value of medical research." Nature 466(7302): 28-28.

 

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