CEIGR Training Provides Key Insights Into the Social and Ethical Implications of Genomic Research

Jessica Blanchard, Julie Beans, and Joseph Yracheta from the Center for the Ethics of Indigenous Genomic Research (CEIGR) leading a bioethics training at Variant Bio, March 2023. Photo credit: Sarah LeBaron von Baeyer

“We think of ethics as being an overall part of research, but how can we make it a foundation of all research, and not just a one-and-done checklist? Ethics should inform every stage of research. Let’s get away from that idea of a single-use ethics model, kind of like single-use plastics.”

Thus began a thought-provoking all-staff bioethics training at Variant Bio, led by three researchers from the NHGRI-funded Center for the Ethics of Indigenous Genomic Research (CEIGR): Jessica W. Blanchard, PhD, an anthropologist and senior research scientist at the University of Oklahoma’s Center for Applied Social Research, Julie Beans, MPH (Oneida and Yup’ik), a researcher at the Southcentral Foundation, a tribally owned and operated healthcare organization based in Anchorage, Alaska, and Joseph Yracheta, MS, PhDc (Purhepecha and Raramuri), Executive Director of the Native BioData Consortium, the first ever biorepository established in an American Indian Nation.

Variant Bio has always put ethics at the forefront of its approach to genomics-driven drug discovery — for example, through the establishment of an independent Ethics Advisory Board well ahead of even a Scientific Advisory Board, and by pioneering a unique benefit-sharing program around the world. Still, we know we have a great deal more to learn, and are constantly seeking ways to push our thinking even further around the social and ethical implications of genomic research.

Hence our excitement to have CEIGR in the room with us in Seattle this spring. The all-staff training kicked off with an acknowledgment that much of the work that CEIGR does is with Indigenous communities in the United States, that are all very different in and of themselves, and also positioned differently from Indigenous communities in other parts of the world where Variant Bio works. Nevertheless, regardless of the location where a study takes place, there are still core components common to all community-engaged research. As Jessica Blanchard put it, “As much as I like to tell people that engagement is not formulaic, it is not a one-size-fits-all, there are still some really basic ingredients involved such as trust, relationships, time, and resources.”

Fig. 1 from A Framework for Enhancing Ethical Genomic Research with Indigenous Communities (KG Claw et al 2018)

CEIGR members then laid out the core set of ethical principles that were established by the Belmont Report in the 1970s to guide research involving human subjects, namely: 1) respect for persons (the obligation to acknowledge individual autonomy and protect those with diminished autonomy), 2) beneficence (the obligation to maximize possible benefits/minimize possible harms), and 3) justice (the idea that research should be fair and distributive). Importantly, CEIGR acknowledged that many frameworks and principles such as these are designed around Western notions that don’t always correlate easily into all communities–especially communities where the individual is not seen as the primary actor. Take the notion of justice, for example. What does justice look like for individuals versus in a community setting?

Other key insights shared during the training included the following on:

1) Community engagement:

• Engagement is an ongoing, dynamic, and bidirectional process
• Better engagement leads to better science
• Community-engaged research encourages community involvement at every stage of the research process
• Whether working with an Indigenous, minority, or marginalized population, you have to respect: their suffering (economic, political, environmental, etc.); their need for intervention that they believe is being fulfilled by participating in research; their unique history (which may include a history of adaptation and admixture due to colonialism); and their proxy data (e.g. microbiome, medical records, etc.)

2) Risks & benefits of research:

• It’s good practice to refer to what is commonly known as the Havasupai Study as the Arizona State University (or ASU) Diabetes Study, since the former appellation risks further stigmatization for the communities involved
• Scientists need to engage stakeholders to ensure that research promotes clear pathways to benefits for those being asked to take part
• For the longest time, most of the promise of research has been altruistic, and that rarely if ever happens; the data tends to all go one way and get developed into something that profits somebody else

3) Working with Indigenous communities:

• Tribes are sovereign nations, not racial and ethnic groups, and they have sovereignty (there are different types of sovereignty: governmental, social and public relations, corporate, etc.); when we as researchers do not respect their authority to oversee and regulate their own research or research about them, we are undermining that sovereignty
• Community consent can be just as important as — if not more important than — individual consent
• “Indigenous people do not want to do genetic research” is still a commonly held assumption among non-Indigenous researchers; while that may be true in some communities, it is a blanket assumption with a lot of missing nuance that does not account for differences across communities or changes over time
• Assumptions are external perspectives that are often ill-informed, versus concerns, which are grounded in real experiences and real perspectives; non-Indigenous researchers need to think more critically about where these assumptions come from and how to understand them in a more nuanced way as communities’ legitimate concerns

Lastly, the good folks from CEIGR recommended diving into their own list of publications as well as the amazing resources on these and other topics available through Local Contexts and ELSIhub’s collections.

They also suggested that we stop reading about Indigenous concerns in genomic research from people who aren’t themselves Indigenous, and instead elevate Indigenous-centered perspectives and scholarship. Here, for example, is a good reading list to start with:

• Genomic Research Through an Indigenous Lens: Understanding the Expectations (NA Garrison et al 2019)
• Genome Justice: Genetics and Group Rights (R Tsosie 2007)
• Genetics, Culture and Identity in Indian Country (K TallBear 2000)
• Indians, Genes and Genetics: What Indians Should Know About the New Biotechnology (D Harry & F Dukepoo 1998)
• A Framework for Enhancing Ethical Genomic Research with Indigenous Communities (KG Claw et al 2018)
• Indigenizing Science and Reasserting Indigeneity in Research (KS Tsosie & KG Claw 2020)
• Rights, Interests and Expectations: Indigenous Perspectives on Unrestricted Access to Genomic Data (M Hudson et al 2020)
• Overvaluing Individual Consent Ignores Risks to Tribal Participants (KS Tsosie et al 2019)
• Extending Research Protections to Tribal Communities (B Saunkeah et al 2021)
• Community Partnerships are Fundamental to Ethical Ancient DNA Research (E Kowal et al 2023)
• Māori Data Sovereignty and Privacy (T Kukutai et al 2023)