ELSI - Session 2

Session 2: Consent and communication in genetic research

Appropriate communication with communities is essential for informed consent, community engagement and culturally appropriate care in genomic research and clinical services.  Reflections on the role of linguistic concepts and experiences in creating a shared language to enable the communication of complex scientific concepts will be shared with the intent of supporting broad application of the presented methods in other contexts.

Prof. Clement Adebamowo

Improving comprehension of informed consent for genomics research

Comprehension is an important requirement for adequacy of informed consent. This becomes challenging when complex scientific concepts need to be communicated in low scientific education level environments.

Communities have linguistic and cultural concepts that can be elicited and used to communicate heritability of characters, traits, and diseases.

I describe our approach to eliciting these concepts in a Nigerian community and how we are using the concepts to improve informed consent in genomic epidemiology research. We created a database and invite researchers to contribute similar words and concepts from their communities. We also share our methods so researchers can replicate these methods in their environment.

Comprehension is an important requirement for adequacy of informed consent. This becomes challenging when complex scientific concepts need to be communicated in low scientific education level environments.

Communities have linguistic and cultural concepts that can be elicited and used to communicate heritability of characters, traits, and diseases.

I describe our approach to eliciting these concepts in a Nigerian community and how we are using the concepts to improve informed consent in genomic epidemiology research. We created a database (https://indigenestudy.bioethicscenter.net) and invite researchers to contribute similar words and concepts from their communities. We also share our methods so researchers can replicate these methods in their environment.


Dr Gareth Baynam

Learnings from clinical implementation of genomics and phenomics for Indigenous health applications

Many yesterday’s ago, you were created from the DNA stories you share with your ancestors.  From your first day, you communicated with your mother through your face. Today, I am writing in a language that you use to share your stories, your hopes and your dreams. These are your life’s languages.  The life languages of our DNA, faces and the written word are universal and fundamental to health and well-being. Like a highlighter in the book of our Life’s DNA language, epigenetics draws attention for insights into human health. 

Gareth will discuss experiences from clinical implementation of genomics and phenomics for Indigenous health from the red sands of the Western Australian Desert to the blue waters that flow through the capital city of Western Australia, Perth, with a focus on rare diseases. Specifically how that might translate to the epigenetic setting. Including community engagement, capacity building, perspectives on data sharing, reference data, return of benefit, line of sight to medical need, the use of language, and more broadly culturally appropriate care from experiences.

A/Prof Donna Cormack and Ms Hana Burgess

Navigating genomics: Upholding intergenerational relationships

This talk explores how, as Māori, we can honour and uphold our intergenerational relationships through whakapapa, as genomic research and technologies becomes increasingly common in our society. Grounded in Māori world views, we query the role genomic research and the application of genetic technologies have in realising our wider aspirations as Māori, namely, being in good relation. We also consider how we can navigate processes of consent in this space, in a way that honours our whakapapa relationships within and between generations.

We acknowledge that our ancestors have always found creative ways to engage with the changing world around us. Here, being grounded in Māori worldviews can continue to provide a way to think through engaging with science and technology. We can think through how we can be in good relation with new ideas and technologies, including those in the field of genomics.

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