Friday & Saturday, May 19th & 20th 2006

Program Description & Objectives

Rapid developments in genetic and genomic research present increasingly complex ethical, legal, social, and policy issues that challenge physicians, researchers, IRBs, public health workers, and others involved in the research enterprise. Most are not fully informed about the perplexing issues nor are many aware of the latest regulations and guidances. To meet this need, the National Institutes of Health's National Human Genome Research Institute (NHGRI) has awarded the Columbia University Center for Bioethics a grant to educate the research community on this very timely and important topic.

The Ethics of Genetics in Research: Perils and Promises, a state-of-the-art national conference, responds to the need for enhancing the knowledge and application of ethical principles to genetic and genomic research. Over one and a half-days, presenters will address emergent genetics research and its ethical and policy implications, as well as the newest regulations and policies pertaining to our topic. Plenary sessions and interactive workshops will promote the opportunity for information exchange and discussion of how to advance basic, translational, and clinical genetics research ethically.

At the end of this one and a half-day conference, participants should be able to:

• Understand the ethical issues for informed consent in genetic research
  
  
• Describe procedures to protect privacy and maintain the confidentiality
  of genetic information
  
  
• List examples of stigma or discrimination in the research or work
  setting
  
  
• Be knowledgeable about current federal and state regulations for
  genetic research
  
  
• Be familiar with the ethical issues involved in using genetic
  databases, registries, and the use of personal genetic identifiers
  
  
• Identify varied ethical issues of genetic research with diverse ethnic
  and cultural groups, as well as vulnerable and special populations
  such as women, newborns, children, and adolescents
  
  
• Identify ethical issues in genetics of behavioral and mental health
  research
  
  
• Describe the controversy about race as a genetic reality or social
  construct

Link to the Conference Program

Acknowledgements

The co-sponsorship with Public Responsibility in Medicine and Research
(PRIM&R) is gratefully acknowledged.

This conference is supported by a conference grant to the Columbia University Center for Bioethics from the National Institutes of Health (NIH) National Human Genome Research Institute (NHGRI), Grant Number 1R13HG003943-01.