Everyone wants your DNA--whose is it anyway?

In contrast to Kaiser Permanente's recent acknowledgement that they are planning to use tissues, including DNA, from their patients for unspecified resarch unless individuals opt-out by submitting a letter to them, the Ministry of Health in New Zealand announced today that residents of that country are being asked to comment on proposed guidelines for such unspecified research. In an article, the ministry's chief clinical adviser, Sandy Dawson, stated:

New Zealand already has clear guidelines on the ethical collection, use and disposal of tissues for research which is specified at the time that consent is given. These proposed guidelines provide additional guidance for ethics committees and researchers to cover situations where tissues can be stored and used for to find answers to research questions that arise in future.

According to the article, "human tissue is defined as any material that is, or includes, human cells. It includes all or any part of a body, a foetus or the body of a still-born child, human stem cells, other human cells and blood."

New Zealand research groups are among those who want to bank human tissue for future, unspecified research. Kaiser Permanente, deCODE genetics (Iceland), biobank of the UK, and many other groups are already building or working with their "biobanks". Several days ago you had an invitation to give comment on a US genetic advisory committee proposal for a biobank--at the same time NIH has already begun initial work on such a project. Hmmm, should we wonder whether the branches of our government are not talking to each other?

What's happening? Are the decisions being made for us? Do we have any say in the matter?

Becoming informed--even realizing that these things are happening around us--is a good first step. Reading and commenting on notices for public input are other ways. If you want to read what New Zealand proposes, go to http://www.moh.govt.nz/moh.nsf/indexmh/guidelines-use-of-human-tissue and download a copy of the proposed guidelines.

For the US proposals (for what they're worth), check out the blog entry YOUR comments needed on whether NIH should start a population study on Genes, Environment, and Disease.

Marie Godfrey, PhD

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