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THE CENTER FOR GENETIC RESEARCH ETHICS & LAW
 

CENTER DOCUMENTS
Publications

2004

 

  1. Davis, D. (2004). "Genetic Research and Communal Narratives." Hastings Center Report 15(1): 40-49.
  2. Juengst, E. T. (2004). "FACE facts: why human genetics will always provoke bioethics." J Law Med Ethics 32(2): 267-75, 191.
  3. Marshall, P. (2004). "The individual and the community in international genetic research." Journal of Clinical Ethics 15(1): 76-86.
  4. Mehlman, M. J., R. H. Binstock, et al. (2004). "Anti-Aging Medicine: Can Consumers Be Better Protected?" The Gerontologist 44(3): 304-310.

 

2005

 

  1. Binstock, R. H. (2005). "The Politics and Ethics of Anti-Aging Science." Asia-Pacific Biotech News 9(5): 708-711.
  2. Gaines, A. (2005). Race: Local biology and culture in mind.  In Companion to Psychological Anthropology Modernity and Psychocultural Change, C. Casey and R. Edgerton. Oxford: Blackwell. 255–278
  3. Hoffman, S. (2005). ""Racially-tailored" medicine unraveled." Am Univ Law Rev 55(2): 395-452.
  4. Hoffman, S. (2005). "Is there a place for race as a legal concept?" Arizona State Law Journal 36: 1093 -.
  5. Marshall, P. (2005). "Human Rights, cultural pluralism and international health research." Theoretical Medicine and Bioethics 26(6): 529-557.
  6. Marshall, P. (2005). Commentary: Research on Noma in Rural Nigeria. In: Lavery JV, Wahl E. Grady E, Emanuel EJ. International Research Ethics: A Case Book, New York: Oxford University Press.
  7. Mehlman, M. J. (2005). "Genetic enhancement: plan now to act later." Kennedy Inst Ethics J 15(1): 77-82.
  8. Natowicz, M. (2005). "Newborn screening--setting evidence-based policy for protection." N Engl J Med 353(9): 867-70.
  9. Whitehouse, P. and E. Juengst (2005). "Anti-Aging Medicine and Mild Cognitive Impairment." Journal of the American Geriatrics Society 53(8): 1417-22.

 

2006

 

  1. Binstock, R. H., J. R. Fishman, et al. (2006). "Anti-Aging Medicine and Science: Social Implications."  Handbook of Aging and the Social Sciences, 6th edition. R. H. Binstock and L. K. George. San Diego, CA, Academic Press: 436-455.
  2. Binstock, R. H., J. R. Fishman, et al. (2006). "Boundaries and labels: anti-aging medicine and science." Rejuvenation Res 9(4): 433-5.
  3. Davis, D.  (2006). “Genetic Testing and Tort Actions.” Genetic Testing: Care, Consent, and Liability.  N.F. Sharpe and R.F. Carter. Hoboken, N.J. , Wiley-Liss: 107-127.
  4. Dressler, L. G. and E. T. Juengst (2006). "Thresholds and boundaries in the disclosure of individual genetic research results." Am J Bioeth 6(6): 18-20; author reply W10-2.
  5. Hoffman, S. and J. Berg. (2006). "The suitability of IRB liability."  University of Pittsburgh Law Review.   67(2):365-428. 
  6. Hoffman, S. (2005). ""Racially-tailored" medicine unraveled." Am Univ Law Rev 55(2): 395-452.
  7. Juengst, E. (2006). “Alter-ing the Human Species?  Misplaced Essentialism in Science Policy” in John Rasko, Gabriele O’Sullivan and Rachel Ankeny, Eds, The Ethics of Inheritable Genetic Modification. (Cambridge, UK, Cambridge University Press, 2006):149-159.
  8. Juengst, E. (2006). Population-based Genetic Research and Screening: Conceptual and Ethical Issues. The Handbook of Bioethics. B. Steinb0ok, Oxford.:471-491.
  9. Marshall, P. (2006). "Informed consent in international health research." Journal of Empirical Research on Human-Research Ethics 1(1): 25-42.
  10. Marshall, P. (2006). "Commentary: Politics, Culture and governance in the Development of Prior Informed Consent in Indigenous Communities, JP Rosenthal." Current Anthropology 47(1): 134-135.
  11. Marshall, P. (2006). Ethical Issues in Research Design and Informed Consent to Biomedical and Social Research in Resource Poor Settings. Geneva, World Health Organization.
  12. Marshall, P. and J. Berg (2006). "Protecting Communities in Biomedical Research." American Journal of Bioethics 6(3): 28-29.
  13. Marshall, P. A., C. A. Adebamowo, et al. (2006). "Voluntary Participation and Informed Consent to International Genetic Research." American Journal of Public Health 96(11): 1989-1995.
  14. Mehlman, M. J., E. Banger, et al. (2006). "Doping in Sports and the Use of State Power." Saint Louis University Law Journal 50: 15–73.

 

2007

 

  1. Davis, D. (2007). "The changing face of misidentified paternity." Journal of Medicine and Philosphy 32(4): 359 - 373.
  2. Dressler, L. (2007). "Control and Use of Banked Human Specimens in Research.  Biospecimen Ownership Counterpoint." Journal of Cancer Epidemiology, Prevention and Biomarkers 16(2): 190-191.
  3. Hoffman, S. and A. Podgurski (2007). "Securing the HIPAA Security Rule." Journal of Internet Law 10(1).
  4. Leppert, M., I. Matsuda, et al. (2007). "Community Engagement, Public Consultation, and Informed Consent in the International HapMap Project." Community Genetics 10(3): 186-198.
  5. Natowicz, M., N. Kass, et al. (2007). "Access to Health Insurance: Experiences and Attitudes of those with Genetic versus Non-genetic Medical conditions." American Journal Medical Genetics 143A(7): 707-717.

 

 In Press

 

  1. Juengst, E.  (in press). Annotating the Moral Map of Enhancement: Gene Doping, the Limits of Medicine and the Spirit of Sport. In T. Murray's Ethics, Genetics and the Future of Sport: Implications of Genetic Modification Selection. Washington, DC, Georgetown University Press.
  2. Juengst, E. and A. Goldenberg  (in press).  Genetic diagnostic, pedigree and screening research. The Oxford Textbook on The Ethics of Clinical Research. E. Emanuel, Grady, C., Reidar, L Miller, F. Wendler, D.. Oxford University Press.
  3. Juengst, E. and H. Grankvist  (in press). Ethical Issues in Human Gene Transfer: A Historical Overview, John Wiley and Sons.
  4. Binstock, R. H., J. R. Fishman, et al. (in press). The Ethics, Sociology, and Politics of Anti-Aging Medicine and Science. Beyond Therapy. T. Runkel. Bonn, Germany, Institut für Wissenschaft und Ethik.

 

 

Books

 

Genetic Testing for Alzheimer Disease
Edited by Stephen G. Post & Peter J. Whitehouse
Published 1998, Johns Hopkins University Press

In "Genetic Testing for Alzheimer Disease," Stephen G. Post and Peter J. Whitehouse bring together experts from the fields of ethics, genetics, policy, neurology, philosophy, and anthropology to examine the ethical and social aspects of genetic testing for Alzheimer disease. The authors begin by focusing on current genetic findings and their clinical applicability. They then address ethical issues in genetic testing and genetic counseling for Alzheimer disease. They examine social issues such as confidentiality, discrimination, and fairness in health care. Finally, they discuss ways to educate professionals and laypeople regarding these issues.

Wondergenes: Genetic Enhancement and the Future of Society
Mehlman, Maxwell J.
Published 2003, Indiana University Press

"Wondergenes is a serious, accessible introduction to the social and personal implications of genetic engineering. Mehlman weighs the social and economic costs of the many proposals to regulate or limit genetic engineering and provides six concrete policy recommendations--from professional licensing to a ban on germ-line enhancement--that propose to make the future of genetic enhancement more equitable and safe.


Ethics and Research with Children: A Case-Based Approachbook
Kodish, Eric
Published 2005, Oxford University Press

In this edited volume, a diverse group of scholars present and discuss challenging cases in the field of pediatric research ethics. After years of debate and controversy, fundamental questions about the morality of pediatric research persist: Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research that involves young children? What should be the role of the older child in decisions about research participation? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled?


 

Genetics: Ethics, Law, and Policy
(American Casebook Series)
Andrews, Lori B.
Parr, Todd A.
Published 2002, West Group Publishing

 

Access to the Genome: The Challenge to Equality
Mehlman, Maxwell J.
Botkin, Jeffrey R.
Published 1998, Georgetown University Press

bookThis book explores instead the potential harm to society if we unfairly distribute the enormous benefits of genetic technologies. The resulting division of society into genetic haves and have-nots would undermine the basic foundation of Western democratic society -- the belief in equality of opportunity. In an original contribution to the literature, the book then discusses the alternatives for avoiding the creation of a genetic underclass, ranging from halting the Human Genome Project itself to making genetic technologies available without regard to ability to pay. The authors' provocative conclusion is that a lottery in which everyone has a chance to obtain access to these technologies is the only feasible option.


 

The Fountain of Youth: Cultural, Scientific, and Ethical Perspectives on a Biomedical Goal
Post, Stephen G.
Binstock, Robert H.
Published 2004, Oxford University Press

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Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children's Futures (Reflective Bioethics)
by Dena S. Davis
Published 2001, Routledge

In "Genetic Dilemmas and the Child's Right to an Open Future, Davis examines perplexing medical cases as a means to discussion of ethical dilemmas raised by the availability of new reproductive technologies. Her discussion covers genetic ethics, as well as the ethics of parenthood. The author advances an ethical theory that can guide health care professionals, policy makers and parents when the rights and interests of parents collide with those of their "potential children" or children. Davis addresses four ethical issues in genetics in "Genetic Dilemmas including disabled parents who seek assistance in conceiving a child who shares their disability; genetic testing of children with no immediate medical benefit; sex selection and determination of fetal sex; and the cloning of human beings.

 

 

Notes from a Narrow Ridge: Religion and Bioethics
by Dena S. Davis (Editor), Laurie Zoloth (Editor)
Published 1999, University Publishing Group