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Blog entry

Indigenous perspectives on unrestricted access to genomic data

By Genomics Aotearoa researcher Maui Hudson from the University of Waikato 

It is vital that genomics research respects genomic data and genetic heritage from indigenous communities.

Genomics research is a rapidly growing field of study, and there is a strong push to make the huge amount of data being produced open source for all researchers to use – the rational being that more available science creates greater societal benefits.

But we know that isn't actually the case, and that unrestricted access to genomics data can lead to injustice.

We -  myself and a group of New Zealand from the University of Waikato, University of Otago and University of Canterbury, Crop and Food Research and Manawaora The Centre for Health, Tauranga, teamed up with international researchers from prominent research organisations in the United States, Canada, Australia, South Africa and Spain to delve deeper.

Our review outlined perspectives from indigenous scientists and communities defining responsible access to genomic data. We explored the rights and interests that Indigenous communities might have in genomic data, and proposed several principles for sharing genomic data derived from Indigenous communities.

The international journal Nature Reviews Genetics subsequently published this work - "Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data,"  which to us recognises the importance of ensuring equity is integral to research. 

What we found
We have identified enduring negative effects on indigenous peoples, minority populations or socially disadvantaged groups across numerous research project.

We argue an open source approach is not equitable as these communities carry substantial risk but see few of the benefits of genomic research. 

We believe the indigenous voice will be lost if their perspectives are ignored, and the benefits of the research will simply not reach these communities.

We assert it is vital that researchers do not continue disempowering indigenous communities by appropriating their genomic data and genetic heritage. 

Involving indigenous communities in genomic research will ensure the benefits of research are shared more equitably and developing access and benefit-sharing protocols is a key pathway to move forward. 

From an indigenous perspective, this means moving away from an across the board call for ‘openness for human benefit’ to more nuanced, careful and clearly articulated positions that can support open and accessible data while recognising limitations and the possibility of restrictions.

What we suggest is required
Greater diversity and inclusion of indigenous peoples in genomic research will be supported by adopting three broad principles: 

  1. Building trust, whereby indigenous communities decide whether their genomic data and associated metadata are publicly available or accessible on request.
  2. Enhancing accountability, in which the provenance of Indigenous samples and genomics data must be transparent, disclosed in publications and maintained with the data.
  3. Improving equity, whereby credit should be given to Indigenous communities to support future use and benefit- sharing agreements as appropriate.

We suggest these principles will happen only through efforts to develop closer relationships between genomic researchers, on the one hand, and indigenous communities and indigenous genomic scientists, on the other. 

That will require recognition of indigenous rights and interests, as well as a commitment with indigenous groups to partnership and power sharing in the development of genomic research initiatives to ensure equitable benefits of genomic data and distribution of real benefits back to the communities themselves.

Involving indigenous communities in genomic research will ensure all members of society reap the benefits.

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

Read more about Te Nohonga Kaitiaki here.