ELSI - Session 1

Session 1: Genetic research and clinical genomics for Indigenous people

Precision medicine has the potential to dramatically change patient care, particularly for chronic diseases. Enhanced understanding of the unique ways genetic inheritance and environment impact on disease development and severity, including through epigenetic testing, could have a profound impact on individuals, families and communities (Cunliffe, 2015). However, due to the high cost of personalised treatments, minority populations are often overlooked or excluded from research, and may lack access to culturally aware healthcare.

Session 1 brings together ethical issues of genetic research for Indigenous communities and the challenges in ensuring ethical distribution of benefit in clinical genetic services for Indigenous people and their families.  Questions of tribal sovereignty, Indigenous research capacity, provision of culturally safe care and Indigenous access to precision medicine will be considered from Native American and Indigenous Australian perspectives.

Chief Lynn Malerba

Policy considerations for Tribal Nations with Regard to Genetic Research

As with any new technology or scientific discovery, the ethical implications for indigenous communities at times lag behind the science.  While genetic research and targeted precision medicine holds much promise in developing individualized health care, its implications for tribal nations and their citizens must be addressed through good policy.  It is important to understand the history of our indigenous people and the lens through which genetic research is considered.  Any research conducted must be conducted while preserving tribal sovereignty.  Policy considerations regarding tribal government consent, data sovereignty, cultural considerations for bio-specimens, protection and ownership of data, intellectual property rights and risks to the tribal community must be addressed prior to the initiation of research.  Best practices are beginning to emerge as tribal communities begin to develop their research capacity and develop laws regarding data sovereignty.

Ms Kristy Meiselbach

Improving Genetic Health Services for Aboriginal and Torre Strait Islander people in three Australian States: Using Consumer and Practitioner Experiences to Design Culturally Safe Policy

Objectives: The Better Indigenous Genetic (BIG) Health Services project aims to improve the delivery of genetic health services to Indigenous Australians by explicitly focusing on working with clinical service partners, communities and end-users to develop more effective models for meeting the needs of Indigenous people.

Methods: We used a mixed-methods approach to characterise models of care used by three mainstream clinical genetics services and one specialised Indigenous community organisation. This consisted of 1) a service audit of the mainstream services to determine engagement with Indigenous patients between 2014-2018 (n=15,837, 4.5% Indigenous) and 2) semi-structured interviews with practitioners (n=24) and consumers (n=73) to investigate successes and barriers experienced in service access and provision.

Lessons Learned: Our findings illustrate an underrepresentation of Indigenous people in attendance at clinical genetic services and indicate key barriers to access that may disproportionately affect these patients. There was consensus among clinical service providers that current protocols do not support culturally safe care or acceptable outcomes for some Indigenous patients. However some service delivery models were more effective in meeting the needs of Aboriginal and Torres Strait Islander people than others.  Key themes emerged from consumer interviews highlighting the requirement for tailored approaches to service provision for Indigenous people, in order to respect individual-, family- and community-level needs and experiences.

Implications: In the absence of accessible and culturally appropriate clinical genetics services, advances in precision medicine are more likely to further widen the gap in health between Indigenous and non-Indigenous Australians. The shared experience of colonisation in Australia, the United States, Canada and Aoteoroa/New Zealand, notwithstanding jurisdictional differences in policy on precision medicine in general, makes these comparisons informative for the development of guidelines internationally.

Dr Aida Falcon de Vargas

Ethical, legal and social implications of advances in epigenetics and precision medicine. Considerations in some Latin American countries.

The Latin American region is the most inequitable in the world, with an average Gini Index of 52.5 and 25% of the population living in poverty. In 2019, the average income in Venezuela was 72 U.S. cents per day. Based purely on income, the report says, 96 percent of Venezuelans live in poverty and 70 percent live in extreme poverty.

The Venezuelan population is very heterogeneous as a result of the admixture process that occurred between Native Americans, Europeans, and Africans through five centuries. Latin America is home to 42 million Indigenous people, making up about 8% of the population, according to World Bank data. Amerindians or Native Venezuelans, form about 2% of the total population of Venezuela, although many Venezuelans share some Indigenous ancestry.

Genomic research has long-standing problems with diversity, especially for Indigenous peoples and minorities, who are underrepresented in genome-wide association studies conducted worldwide. The main ethical issues identified in genetics in Latin America are (1) inequity in access to genetic services, particularly in prenatal diagnosis, (2) genetic discrimination and (3) the lack of adherence to internationally accepted requisites of clinical validity and utility for diagnostic and predictive genetic testing. The debate on bioethics and genetics in Latin America in general, is uncovering a number of dilemmas in the prevention, diagnosis and treatment of diseases influenced by genetic factors, at the heart of which are poverty and social inequality.

In Latin American countries, regulatory frameworks of genetics and genetic services are often rather different from those in other countries, though there is also a wide variability within Latin America itself.   A strong bioethics school of thought in the region has been secular, politically progressive and based in human rights and social justice. This eventually led to the creation of the Latin American and Caribbean Network of Bioethics in 2003, an autonomous academic organization sponsored by UNESCO, that has active members in most countries of the region (Red bioethical (2014) Red Latino Americana y del Caribe de Bioethics UNESCO (Latin American and Caribbean Network of Bioethics UNESCO).

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