Diversity in Datasets collection of thoughts and ideas (key themes)

What does diversity mean, in this context? Can we define diversity? ^[a][b][c]

• May depend on values and contexts
• Encouraging thought/consideration about ‘diversity’ throughout each research stage and decision may be enough.
• Ensuring transparency, explanation and justification of each decision may be of benefit.
• What is the scope of ‘diversity in datasets’?

• This should include the availability of resources and knowledge.

• Need to be able to use specific, appropriate language

What makes the diversity question special in the genomics setting, or not?

Genetic exceptionalism:

• Problems of diversity in genomics is merely re-inventing the wheel from lack of diversity and bias in healthcare.
• The idea that they are different is dangerous - the only way that genomics is special is that genomics put a scientific basis on racism.
• Does it depend on the use case?^[d]
• Genomics have unique challenges that it faces, i.e. in rare and complex diseases
• Genetic exceptionalism is recognised and this frame of mind is used often by publics. This gives it power - and this is what makes it special. How can we respect this? ^[e]
• Genomic data is not always health data - it goes beyond this.

What makes genomics special (or not) in an international context?

• Direct-to-consumer testing:

• Increasing commodification of genetic and genomics data. Large companies have genetic data and  they are selling to other organizations. This is a bit different from other healthcare data in the way that it is sold and collected. For example, there is not always clarity on other uses of it. Other types of health data are more protected.
• Often data is sent overseas.

• Widespread international data sharing is something very particular. You can be identified, which is not necessarily the case with other data
• Genomic data, in countries like Argentina,  is often sent abroad for sequencing/analysis. That data doesn’t come back.
• The legal frameworks protecting genetic data differ across jurisdictions (i.e. identifiability, anonymity, need for consent to share etc.)
• Some countries restrict or are restricted in genomic data sharing
• Different countries can lack the infrastructure to undertake genomic research (unlike health data analysis).

What are the international elements of the diversity question in genomics?

• Benefit sharing / equitable access and return
• Lots of the literature in this area is driven by the US,
• Funding is often required for research that can only benefit the country where funding is coming from

Resources:

New WHO report: https://www.who.int/publications/i/item/9789240052857