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Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life (Ann M. Mc Cartney, et al | January 2022)

Posted by Dr Gary Allen in Human Research Ethics, Research Integrity on March 11, 2022
Keywords: Consent, Culture, Data management, First People, Researcher responsibilities, Respect for persons

The Linked Original Item was Posted On January, 18 2022 22:01:37

Indigenous Australian aboriginal female hand print on a wall. Diversity concept.

This fascinating conference paper that appeared in PNAS as an open access paper explores the tension between open data and data sovereignty. These are two competing and worthy imperatives that need to be resolved.  Researchers must carefully explain data sharing to First People potential participants and seek their consent for the sharing of data.  Your institutional guidance material should discuss this matter.

Abstract
The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations Convention of Biodiversity aims to develop and adopt a standard policy on access and benefit-sharing for sequence information across signatory parties. This standardization will have profound implications on genomics research, requiring a new definition of open data sharing. The redefinition of openness is not unwarranted, as its limitations have unintentionally introduced barriers of engagement to some, including Indigenous Peoples. This commentary provides an insight into the key challenges of openness faced by the researchers who aspire to protect and conserve global biodiversity, including Indigenous flora and fauna, and presents immediate, practical solutions that, if implemented, will equip the genomics community with both the diversity and inclusivity required to respectfully protect global biodiversity.

Mc Cartney, A.M., Anderson, A.J. Liggins, A.L., Hudson, A.M.L., Anderson, A.M.Z., TeAika, A.B., Geary, A.J., Cook-Deegan, A.R., Patel, A.H.R., Phillippy, A.M., (2022) Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life. Proceedings of the National Academy of Sciences. PNAS. 119(4) doi:10.1073/pnas.2115860119
Publisher (Open Access): https://www.pnas.org/doi/abs/10.1073/pnas.2115860119

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life
The field of genomics has benefited greatly from its “openness” approach to data sharing.
However, with the increasing volume of sequence information being created and stored
and the growing number of international genomics efforts, the equity of openness ...

Related Reading

(US) Delivering on NIH data sharing requirements: avoiding Open Data in Appearance Only (Papers: Hope Watson et. al. | June 2023)

Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other? (Papers: Adrian Harper et. al. | December 2021)

The challenges of open access data (Carol Brayne, et al | February 2022)

Academic Citations Evolve to Include Indigenous Oral Teachings – Eos (Katherine Kornei | November 2021)

Principles of Māori & Indigenous research ethics (An annotated bibliography by Dr Lily George)

Indigenous Data Sovereignty in the era of Big Data and Open Data (Papers: Maggie Walter, et al | October 2020)

 For Vulnerable Populations, the Thorny Ethics of Genetic Data Collection – UnDark (Adrian Pecotic | September 2019)

Indigenous Data Sovereignty: University Institutional Review Board Policies and Guidelines and Research with American Indian and Alaska Native Communities (Papers: Tennille L. Marley | 2018)

Indigenous Data Sovereignty (Books: Edited by Tahu Kukutai and John Taylor | November 2016)

Te Mana Raraunga Statement on 2018 New Zealand Census of Population and Dwellings: A Call for Action on Māori Census Data

Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues (Papers: Anna Harding, et al | 2011)

Research, Ethics and Indigenous Peoples: An Australian Indigenous perspective on three threshold considerations for respectful engagement (Ambelin Kwaymullina | 2016)

New curriculum prioritizes tribal sovereignty, cultural respect in scientific research of American Indian, Alaska Native communities – UW News (Kim Eckart | February 2018)

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