Indigenous Data Sovereignty

Indigenous Data Sovereignty
Author: Tahu Kukutai
Publisher: ANU Press
Total Pages: 344
Release: 2016-11-14
Genre: Social Science
ISBN: 1760460311

As the global ‘data revolution’ accelerates, how can the data rights and interests of indigenous peoples be secured? Premised on the United Nations Declaration on the Rights of Indigenous Peoples, this book argues that indigenous peoples have inherent and inalienable rights relating to the collection, ownership and application of data about them, and about their lifeways and territories. As the first book to focus on indigenous data sovereignty, it asks: what does data sovereignty mean for indigenous peoples, and how is it being used in their pursuit of self-determination? The varied group of mostly indigenous contributors theorise and conceptualise this fast-emerging field and present case studies that illustrate the challenges and opportunities involved. These range from indigenous communities grappling with issues of identity, governance and development, to national governments and NGOs seeking to formulate a response to indigenous demands for data ownership. While the book is focused on the CANZUS states of Canada, Australia, Aotearoa/New Zealand and the United States, much of the content and discussion will be of interest and practical value to a broader global audience. ‘A debate-shaping book … it speaks to a fast-emerging field; it has a lot of important things to say; and the timing is right.’ — Stephen Cornell, Professor of Sociology and Faculty Chair of the Native Nations Institute, University of Arizona ‘The effort … in this book to theorise and conceptualise data sovereignty and its links to the realisation of the rights of indigenous peoples is pioneering and laudable.’ — Victoria Tauli-Corpuz, UN Special Rapporteur on the Rights of Indigenous Peoples, Baguio City, Philippines

The Unfortunate Experiment

The Unfortunate Experiment
Author: Sandra Coney
Publisher: Viking Penguin
Total Pages: 300
Release: 1988
Genre: Cancer
ISBN:

In 1984 the medical journal Obstetrics and Gynecology published a paper that would initiate an investigation into one of the greatest medical scandals of the late twentieth century. Titled "The Invasive Potential of Carcinoma in Situ of the Cervix", it discussed the results of an experiment that had been run at the National Women’s Hospital in Auckland, New Zealand, since 1955. The experiment looked at the natural history of cervical carcinoma in situ (CIS) – in other words, what happens if no treatment is initiated in a condition suspected (when the experiment began) to lead to cervical cancer. The paper divided participants into two groups, one that had negative results after biopsy or treatment, and one smaller group that continued to test positive. This second group had a significant rate of cervical cancer; some of these women were followed for twenty-five years without treatment, and in only 5% did the disease spontaneously resolve. For the other 95%, outcomes ranged from positive but localised results to metastatic disease and death. The authors said these results were in contrast with other, earlier papers about the experiment. After much research, Sandra Coney, one-time editor of a NZ feminist magazine, and Phyllida Bunkle, a women’s studies lecturer, wrote an article about the experiment, exposing the unauthorised research performed by one prominent gynaecologist in support of his belief that CIS was not associated with cervical cancer. Professor Herbert Green, a physician of considerable influence and power throughout New Zealand, persisted in his belief despite increasingly convincing proof of a progressive connection between the two conditions, never sought permission from his patients, or even told them what he was doing.