Researchers urge ethics guidelines for human-genome research

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Researchers urge ethics guidelines for human-genome research

http://www.eurekalert.org/pub_releases/2008-03/uoa-rue032608.php

A global team of legal, scientific and ethics experts have put

forward eight key recommendations to establish much needed guidelines

for conducting human-genome sequencing research.

Caulfield, professor and research director of the Health Law

Institute at the University of Alberta in Canada, led a consensus

workshop to develop rigorous guideline recommendations for research

ethics boards. The results appear in the current issue of PLOS

Biology (March 2008).

Researchers met to develop these recommendations because national and

international funding initiatives have substantially increased whole-

gene research activities, and media coverage of both the science and

the emerging commercial offerings related to human-genome research

has heightened public awareness and interest in personal genomics,

says Caulfield.

" Yes, these are early days in the field of human-genome research, but

research ethics guidance is needed immediately, " said

Caulfield. " With how fast this research is growing, it is necessary

that we develop carefully considered consensus guidelines to ensure

ethical research practices are defined for all. "

Some key recommendations of the paper include the right for

participants to withdraw consent (which includes the destruction of

tissue samples and written information); the issues associated with

participants' family members and relevant groups; and the means of

obtaining clear consent from participants for possible future use of

their genes.

" As technology continues to advance, whole-genome research activities

seem likely to increase and expand, " says Caulfield. " As the pace of

this research intensifies, we need to continue to explore the

ethical, legal and social implications of this rapidly evolving

field. "

The researchers note that the policy recommendations covered in the

report are not the only issues that need to be considered.

Commercialization, patenting, benefit sharing and the possibility of

genetic discrimination are among other topics that warrant discussion

in the future.