Genetic Counseling and Indigenous Health: Approaches and Resources For/From Non-Indigenous Allies
Written by: Lauren Barkley
Content Reviewed by: Rachel Baer, MSc, and Andy McCarty, MS, CGC, of Clover Genetics, and Dr. Lee Bitsoi, Director of DEIB at Brandeis University, Navajo
At Clover Genetics, we prioritize effectively and compassionately counseling clients from diverse, intersectional identities. We desire to curate care that is accessible to and reflective of our patients’ many identities. Your story deeply matters to us. That being said, the many Indigenous communities across North America (Turtle Island) deserve compassionate, culturally informed care. Given the history of genetic medicine’s negative impact on Indigenous communities, we aspire to be at the forefront of changing that narrative.
Clover Genetics operates on occupied Shawnee, Hopewell, Seneca, Haudenosaunee, Delaware, and Adena land (1). As a nationwide telehealth practice for many individuals and families across the U.S., we are committed to providing culturally competent care to serve Indigenous communities all over the United States and its territories.
I write from the perspective of a non-Indigenous ally. This project incorporates work from Indigenous individuals and organizations, intending to improve genetics patient care and cultural competency for Indigenous clients. We are always open to receiving feedback and insight from Indigenous individuals and allies on how this resource can evolve to best meet their needs. This guide is intended to be used by other genetic counseling and private practice healthcare and wellness professionals who might not be aware of the unique experiences of Indigenous people within genetic healthcare. We aim to tailor our patient care to Indigenous communities whose needs and wants are often unmet in healthcare settings.
Figure 1: The Medicine Wheel
Image produced by Clover Genetics using Canva. Source material for the meaning of the Medicine Wheel: https://www.torontomu.ca/indigenous-student-services/student-digital-handbook/medicine-wheel-framework/
Historically and today, Indigenous communities have not received sufficient medical care, nor care that was affirming of their identities. Because of this and other structures creating a racial hierarchy that White individuals benefit from, Indigenous communities have never proportionately benefited from medical advancements (2). As recent as the 1990s in the United States, there has been blatant misuse of Indigenous genomic information in biomedical research, breaching ethical standards and informed consent for study participants (3). Understandably, many Indigenous communities have distrusted research that uses their genomic information, a part of all of us that has scientific and personal significance.
Dr. Krystal Tsosie, a member of the Diné/Navajo Nation, advocates for the necessary movement of Indigenous data sovereignty, most notably through her work leading the Native BioData Consortium. In her 2020 TEDxVanderbilt presentation, she mentioned that since 2013, there has been a significant increase in direct-to-consumer (DTC) genetic testing for ancestry from for-profit laboratories (4). Many of these tests can only assay biomarkers related to specific ethnicities, potentially minimizing the amount of Indigenous ancestry shown in the test’s results, especially in multiracial individuals. Furthermore, certain DTC tests, such as Ancestry DNA, cannot evaluate descent by tribe, identifying Indigenous individuals in a broader scope, such as “Indigenous American.” Dr. Tsosie mentions this is, in part, a result of Indigenous American individuals largely declining to participate in DTC testing since they garner little benefit from doing so.
Indigenous communities reserve the right to claim their own members; tribal membership is not ascertained through a DNA test (4, 5). This reflects the principle that tribal affiliation is up to the tribes themselves to determine. Some tribes, such as the Cherokee Nation, establish tribal affiliation through genealogy and family history tracing as opposed to genetic test results (6). This means that anyone who has a verifiable Cherokee ancestor, regardless of the percentage of Indigenous ancestry that may be visible on a biomarker test, can become enrolled in the tribe. Other tribes, such as the Navajo Nation, utilize blood quantum (7). In summary, Indigenous identity and ancestry are not always reflective of one’s biology, and tribes reserve the ability to choose their members.
With 23andMe filing for bankruptcy, it is unclear how DNA samples from Indigenous American individuals will be stored or used as a result. Those concerned with their DNA privacy and sovereignty may request to delete their account and have their sample destroyed.
The 2SLGBTQ organization OutCare facilitates webinars that highlight important topics, such as the 2025 presentation, “Access to Care: Native, Indigenous, and Two-Spirit Communities,” which does the necessary work of highlighting Two-Spirit and Indigiqueer voices and discusses how best to provide equitable care for these communities (8). An important aspect of Indigenous identity and personhood is being Two-Spirit. “Two-Spirit” is a term adopted by many Indigenous communities across present-day Canada and the U.S., and represents a framework to discuss gender and queer/trans identities in Indigenous communities. Two-Spirit individuals are Indigenous people who embody both feminine and masculine identities, and are often spiritual leaders in tribal settings. Harlan Pruden, a First Nations Two-Spirit scholar, notes that the term “Indigenous” also represents a social framework. The term “Indigenous” was created by the United Nations to denote communities who are ancestrally from a present-day country or region. Some Indigenous communities in the United States have six identified genders as part of their customs and culture, and Two-Spirit individuals can encompass multiple different identities that non-Indigenous queer/trans individuals may use. Two-Spirit individuals, historically, were an important component of cultural celebrations. They were respected, venerated members of many (but not all) Indigenous communities before colonization, with some tribes even affirming same-sex marriages between members who were Two-Spirit or of other genders.
Figure 2: Two Feathers Symbol
Attribution: Dragon401k, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons
File URL: https://upload.wikimedia.org/wikipedia/commons/7/77/Two-Spirit_Flag.svg
Another term adopted by Indigenous communities is “Indigiqueer,” which represents the intersection between the Indigenous and 2SLGBTQ+ identity. The Medicine Wheel, a wheel with four spokes, along with the emblem of two long feathers, are each symbols of the Indigiqueer and Two-Spirit identities.
There are many ways in which non-Indigenous healthcare professionals and clinics can affirm Indigenous and Two-Spirit/Indigiqueer clients. OutCare’s “Access to Care: Native, Indigenous, and Two-Spirit Communities” offers important historical context, insight into medical education, and some practical strategies to build rapport with Indigenous/Two-Spirit/Indigiqueer patients (8). In OutCare’s webinar, Harlan Pruden importantly mentions how queer/trans history has been White-centric in the United States and Canada. A good place to start is to include a land acknowledgment and Indigenous/Two-Spirit imagery or information as a part of your practice’s materials.
Similarly, Dr. Hannah Wegner, a non-Indigenous physician with the Indian Health Services (IHS), notes that her medical school curriculum lacked any Indigenous-centric health information or cultural competency. Educating future health professionals of any specialty and scope about the needs of Indigenous patients is a necessary step to ensure equity in care. Dr. Wegner also mentions how important it is to get to know the community you serve; many Indigenous reservations receive healthcare through the IHS as part of an agreement made through various treaties that forced them to cede their land to the United States, thus losing their homes and many aspects of their cultures. Most providers working for the IHS are not Indigenous, making it all the more important to learn the community’s values, customs, and health goals to provide empathetic, more tailored care. Additionally, the supportiveness of Two-Spirit individuals can vary from tribe to tribe, so it is important to follow a patient’s lead regarding their identity, expression, and labels they use. Not all queer Indigenous individuals identify as Two-Spirit.
In summary, Two-Spirit and Indigiqueer identities are complex; they represent the intersection of Indigeneity and queerness. Affirming Two-Spirit and Indigiqueer patients, listening to their needs and goals, and following their lead regarding their identity and expression will strengthen the relationship between non-Indigenous providers and Indigenous patients and foster culturally competent care.
At Clover Genetics, we continually strive to provide the highest quality and the most equitable care possible. To improve our ability to connect with and serve Indigenous and Two-Spirit individuals, we are considering the following actionable steps. These suggestions might benefit your practice if your practice’s patient demographics are similar to Clover Genetics’:
Photo by CIRA/.CA, available at: https://www.cira.ca/en/indigenous-stock-images/
CIRA’s Indigenous stock photo library is created to honour Indigenous entrepreneurship and address the Indigenous representation gap in stock images. All images were captured by Indigenous photographer Shelby Lisk at Indigenous-owned locations (Adaawe, Beandigen Café and Mādahòkì Farm) with a cast of Indigenous models.
Seek out Indigenous genetic counselors (or ones with experience in working with Indigenous people)
Hire Indigenous consultants to assist with creating educational content that aligns with the cultural knowledge of genetics within a variety of Indigenous communities
Indigenous communities may have a cultural understanding of genetics, disease, and heritability that differs from the Western understanding
It is important to honor the practices, beliefs, and wisdom Indigenous communities possess in a postcolonial world
Follow the patient’s lead regarding how ancestry testing is perceived
Not all Indigenous people value or desire to participate in ancestry testing
Indigeneity is not a function of biology to many Indigenous people and communities
Hire Indigenous care navigators to improve the experience of our Indigenous clients
A notable example of Indigenous care navigators is at the British Columbia Children’s Hospital, who honor Coast Salish traditions (10)
Listen to Indigenous community members within your area of operation to implement their ideas and address their concerns about genetic testing and the genetic counseling process
Historically, Indigenous American DNA has been misused in biological and anthropological research, as mentioned earlier
Addressing privacy and ethics concerns should be a major priority
Implement community meetings with Indigenous people from a variety of backgrounds across North America
We serve many diverse populations across the U.S. We want to learn from you!
Ensure Indigenous patients, and all patients, are aware of how their genomic data will be used, stored, and shared when they undergo testing
Ensure informed consent is established on a case-by-case basis before a test is ordered
A good place to start is by reevaluating the informed consent process to ensure it is equitable for all clients
Photo by CIRA/.CA, available at: https://www.cira.ca/en/indigenous-stock-images/
CIRA’s Indigenous stock photo library is created to honour Indigenous entrepreneurship and address the Indigenous representation gap in stock images. All images were captured by Indigenous photographer Shelby Lisk at Indigenous-owned locations (Adaawe, Beandigen Café and Mādahòkì Farm) with a cast of Indigenous models.
We are always striving to foster community partnerships that are mutually beneficial and that lead to improved client well-being. We welcome any Indigenous tribes to partner with us, any Indigenous-centric public health organizations, and/or any Indigenous-led biorepositories. Our goal is to ensure that Indigenous individuals who need or desire genetic counseling services with us receive the best possible care, comfort, and cultural humility. We look forward to hearing from and supporting the many voices of Indigenous communities.
Citations:
McKees Rocks Community Development Corporation Contributors. “McKees Rocks History.” McKees Rocks Community Development Corporation, CDC Rocks, 6 Feb. 2020, www.mckeesrocks.com/the-neighborhood/history/. Accessed 21 Apr. 2025.
Rohter, Larry. “In the Amazon, Giving Blood but Getting Nothing.” The New York Times, 20 June 2007, www.nytimes.com/2007/06/20/world/americas/20blood.html. Accessed 21 Apr. 2025.
Lee, Joseph. “Geneticist Krystal Tsosie Advocates for Indigenous Data Sovereignty.” Science & Society, ScienceNews, 30 Jan. 2024, www.sciencenews.org/article/genetics-krystal-tsosie-indigenous-data-sovereignty. Accessed 21 Apr. 2025.
Krystal Tsosie. “Our DNA Is Not Our Identity | Krystal Tsosie | TEDxVanderbilt University.” TEDx Talks, YouTube Video, 2025, youtu.be/pkXWjvzjHt8?si=ioOTPueZUoZLlDSV. Accessed 21 Apr. 2025.
AncestryDNA Contributors. “AncestrySupport.” Support.ancestry.com, AncestryDNA, support.ancestry.com/s/article/Indigenous-Americas-Region?language=en_US. Accessed 21 Apr. 2025.
Cherokee Nation Contributors. “Cherokee Nation Frequently Asked Questions.” Cherokee Nation Frequently Asked Questions, Cherokee Nation, 10 Aug. 2023, www.cherokee.org/about-the-nation/frequently-asked-questions/common-questions/?term=&page=2&pageSize=7. Accessed 21 Apr. 2025.
Navajo Nation Contributors. “Navajo Nation FAQs.” www.navajo-Nsn.gov, Navajo Nation | NNDIT, 2025, www.navajo-nsn.gov/Faqs. Accessed 21 Apr. 2025.
OutCare Health, et al. “Access to Care: Native, Indigenous, & Two-Spirit Communities.” YouTube, Recorded Webinar, 26 Feb. 2025, www.youtube.com/watch?v=yh4zzsc5AOo. Accessed 21 Apr. 2025.
Freeman, Abigail A et al. “Preparing genetic counselors to serve Native American communities.” Journal of genetic counseling vol. 30,5 (2021): 1388-1398. doi:10.1002/jgc4.1405. https://doi.org/10.1002/jgc4.1405
BC Children's Hospital Indigenous Patient Navigators. “Indigenous Health | BC Children’s Hospital.” Indigenous Health, British Columbia Children’s Hospital, 2025, www.bcchildrens.ca/your-visit/during-your-visit/indigenous-health. Accessed 21 Apr. 2025.
Stock Photos: Photo by CIRA/.CA, available at: https://www.cira.ca/en/indigenous-stock-images/
"CIRA’s Indigenous stock photo library is a free-to-use resource created with the purpose of honouring Indigenous entrepreneurship and addressing the Indigenous representation gap in most online stock images.
All images were captured by Indigenous photographer Shelby Lisk at Indigenous-owned locations (Adaawe, Beandigen Café and Mādahòkì Farm) with a cast of Indigenous models. "