via the Philippine National Commission on Indigenous Peoples (NCIP), 19 April 2021: The team from Uppsala University behind a recent celebrated genomics paper publishd in PNAS on Philippine populations has been called out by the Philippine government body in charge of indigenous peoples for lacking ethics clearance to conduct their research. Their statement is published here in full.
STATEMENT CONDEMNING THE CONDUCT OF GENETIC/GENOMIC RESEARCH WITH INDIGENOUS PEOPLES BY DR. MAXIMILLIAN LARENA AND HIS TEAM WITHOUT FPIC AND THE REQUIRED ETHICAL CLEARANCE
The NCIP, as the primary Philippine government agency mandated to protect the rights and well-being of Indigenous Cultural Communities/Indigenous Peoples (ICCs/IPs), raises grave concern on the genetic/genomic research on Philippine ICCs/IPs conducted by Dr. Maximilian Larena of Uppsala University, Sweden and his team without the prescribed clearances as required by applicable laws and rules and regulations.
Dr. Larena and his team conducted their research and collected human samples from members of indigenous communities from 2015 to the present without compliance to the Free and Prior Informed Consent (FPIC) despite clear and timely reminders of such a requirement. In particular, the researchers did not comply either to the NCIP Indigenous Knowledge Systems and Practices (IKSPs) and Customary Laws (CLs) Research and Documentation Guidelines of 2012 (Administrative Order No. 1, Series of 2012) and/or the Revised Guidelines on the Exercise of Free and Prior lnforrned Consent and Related Processes of 2012 (NCIP Administrative Order No. 3, Series of 2012).
Dr. Larena and his team did not, likewise, obtain the required ethical clearance from the National Ethics Committee, the review committee accredited by the Philippine Health Research Ethics Board (PHREB), in utter disregard to the fundamental requirement for any human research in the Philippines as prescribed by the 2011 and 2017 National Guidelines for Health and Health-Related Research.
This blatant disregard of critical policies governing scientific research in the Philippines, if unchecked, will have far-reaching adverse impact to the governance of scientific research in the country. Also, the continued publication of scientific results that have not undergone the appropriate FPIC process and community validation by ICCs/IPs can cause social, cultural, and legal harm to the communities, if not adequately interpreted and communicated to the general public. In addition, the lack of consent also offends the rights of the ICCs/IPs to self-determination, self-governance, humans rights, and social justice.
For these reasons, the Commission strongly condemns these acts of Dr. Larena and his team and demands from them and the Uppsala University of Sweden the following:
(1) To stop using the data derived from the analysis of Philippine samples that had been unethically collected,
(2) Removal of all genetic data from all databases, including those already shared with other groups,
(3) Destruction of these samples to be overseen by a designated member of the Philippine delegation in Sweden,
(4) Issuance of a public apology to the Filipino people, specifically the indigenous peoples, and
(5) To take down all related publications including those shared in social media ecosystem.