Journal Article

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data

Anderson, Jane, Ballantyne, Leah L, Martinez, Andrew, Baynam, Gareth S, Rolleston, Anna K, Hudson Maui, Stott, Matthew, Lovett, Ray, David-Chavez, Dominique, Tiffin Nicki, Haring, Rodney, Sporle, Andrew, Sterling Rogena, Yracheta, Joseph, Chagné, David, Wilcox, Phil, Bolnick, Deborah, Reading, Jeff, Dearden, Peter K, Brown, Alex, Te Aika Ben, Walter, Maggie, Garrison Nanibaa’ A, Maile, Taualii, Malhi Ripan S, Caron, Nadine R, Carroll, Stephanie Russo, Arbour, Laura, Fox Keolu, Tahu, Kukutai, Garba Ibrahim

2020

Overview

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.In this Perspective article, the authors discuss how Indigenous Peoples' desires for greater involvement and oversight when participating in genomic research projects can be balanced against calls for unrestricted data access. They provide practical recommendations for the handling and sharing of Indigenous genomic data, with the aim of achieving mutual benefit for the research community and participating Indigenous communities.

• Publisher: Nature Publishing Group
• Subject: Genetic research / Genetic resources / Indigenous peoples / Native rights