The right move

Brazil is world's first nation to introduce genetic privacy right

Published: Thursday 30 September 2004

brazil's National Health Council has approved revised regulations on the ethics of research. The rules, which came in force from August 9, 2004, are aimed at protecting the rights of individuals over the genetic information they provide for research about human genetic variation and gene-related diseases.

Under the rules, formulated by the council's National Committee of Research Ethics, those who provide samples for research will be able to choose whether or not to be told about any of their genetic details that are discovered by researchers. They will also have the right to remove their sample from research databases at any time. The new document also states that under no circumstance can information on an individual gathered through such research be made available to third parties (such as insurance companies and current/future employers).

The new rules update a 1996 law on the ethics of research, which was difficult to enforce due to a lack of legal and technical details specific to genetic research. Previous updates to the 1996 law covered areas such as collaboration with foreign researchers and scientific exchanges of gene and blood samples with other countries.

The new text repeats ethical concerns expressed in the 1996 law. But it replaces the general guidelines in the earlier law with a more thorough treatment of each aspect of the way samples are obtained, and what happens to them after they have been collected. The rules confirm the role of both local and national ethics of research committees, stressing that researchers must seek and respect the committees' decisions before conducting a research. Also emphasised is the importance of 'informed consent' agreements that must be signed by each donor.

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