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NIH GUIDE, Volume 25, Number 8, March 15, 1996


P.T. 42


  Ethics/Values in Science & Technol 


Public Responsibility in Medicine and Research

National Center for Human Genome Research

Tufts University School of Medicine


Public Responsibility in Medicine and Research (PRIM&R) is presenting

a novel conference on the ethical practice of genetic research and

genetic technology development. This follow-up conference to PRIM&R's

premier genetics conference held in May of 1994, "The Ethical

Implications of the New Genetics," will seek to reflect on problems

raised by the accelerating pace of genetic discovery and application

into medical practice by focusing on two challenges in the oversight

of genetic research:


o  How can IRBs become comfortable with the special issues raised by

the inherent qualities of genetic research:  e.g., privacy for

research subjects; manipulation of the human genome; pre-symptomatic

knowledge of disease states; implied consent of family members?


o  How can companies engaged in basic genetic research and new

technology development, in creating appropriate oversight guidance

for their research protocols, product development, and marketing

plans, benefit from the wisdom of twenty years of academic IRBs?


The conference will provide models of and ideas about  how

organizational oversight of genetic research protocols can best be

structured.  The conference will also examine current examples of

genetics moving from the lab bench into practice (for example, our

Panel on the use of the BRCA1 and BRCA2 genes in testing breast

cancer patients).  We will also invite an open exchange of

perspectives and expectations about the conduct of genetic research

protocols (e.g., gene therapy, genetic testing) in our Round Table

discussion involving subjects who have participated in diverse

protocols, providers of genetic services, and clinical investigators.

Through focused and "tracked" workshop discussions, attendees and

faculty will together look at the cultural  and gender-based context

of conducting ethical protocols involving families.


Individual registration fee is $300 per person.  There is an

institutional rate of $1100 for the first four persons and $250 for

each additional person.  Those requiring financial assistance are

encouraged to contact PRIM&R for scholarship information.




Advance registration for the meetings is required by April 25.  For

complete program, additional information and registration, address

inquiries to:



132 Boylston Street

Boston, MA  02116

Telephone:  (617) 423-4112

FAX:  (617) 423-1185



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