4 November 1999 at 11:47:13
Response to: 'The Biodiversity Convention, Intellectual Property Rights, and Ownership of Genetic Resources - International Developments', by Barbara Kagedan
Tena koe,
No doubt we can draw from the lessons and solutions offered by others and I thank you for the inclusion of this paper.
I have been working on a pilot project involving information technology and a consultation/negotiation process with iwi/Maori regarding the ownership and access of intellectual property that is collected, stored and manipulated through a shared and integrated database. The information relates to health records for children from zero to six years of age in two North Island cities.
The project is in its early stages and computer vendors have yet to be selected for the information system design.
The uniqueness of the project relates to the development of a cultural and ethical framework that is based on the protection and development of information about Maori by establishing protocols around its collection and use. In short, it covers aspects of protection not currently covered by the Privacy Act or the Health Information Privacy Code.
To my knowledge, there is no precedent set for information technology and intellectual property frameworks that protect Maori interests. Governmental documents reveal a serious lack of consideration in this area and Maori remain passive participants in information technology.
The cultural and ethical framework for this project includes concepts such as "collective" ownership were a whanau, hapu or iwi can maintain control over computerised data pertaining to its collective within the larger database. An attempt to position "ownership" at the lowest level (eg. community rather than government ministry, hapu rather than iwi, whanau of a child rather than hapu) will increase the confidence of the participants in the protection of their information.
It also supports the notion of "first beneficiaries" where those who wish to use and manipulate data for statistical purposes must demonstrate a benefit to those who provided the data in the first place. For example, if it is ascertained that Ngati X children suffer disproportionately from asthma then a demonstrated benefit must be an outcome of the exercise (eg. resources/funding proposals to develop whanau educational material on asthma prevention).
The resulting document will sit alongside or be integrated into the privacy and ethical documents that are a requirement of the funders of the project and will be a first for this country.
At this time, the document is in draft form and will form the basis for further consultation and negotiation amongst Maori groups who may participate in the project.
I wondered if this subject would be of interest to the readers of this site and would be happy to discuss an information sharing arrangement,
Kia ora rawa atu,
Robyn Kamira
