On average, humans are 99.9% identical in their DNA. While the genetic difference among humans is very small, it is not inconsequential. This difference might help scientists to better understand human evolution and health, which could lead to unprecedented advancements in medicine and care. To unlock these benefits, the field of Human Genomics has received significant public and private funding in recent decades.     

 

 

However, science does not happen in a silo and scientists worry about the repercussions of studying human differences. During the 19th and early 20th centuries, these studies were driven by empirically flawed methodologies, racism, and unethical conduct. Today, scientists recognize the need for diligent work to ensure that history is not repeated. Geneticists frequently work alongside ethicists, social scientists, and marginalized populations to ensure their research is ethically and empirically sound.  

  

 

HUGERA (2025-2029) helps scientists conduct ethically sound research.  

 

 

This project will develop a framework that maps out the ethically sensitive aspects of contemporary genomics research. It will identify the potential risks that could hamper science and lead to harm. Hence, the framework will offer key information for designing ethical recommendations, best practices, and policy decisions. The framework will also motivate new scientific tools, such as new ways to visualize human genetic variation.    

 

HUGERA is innovative. The project uses conceptual resources from the philosophy of science and race to develop a framework that is conceptually robust but also practice oriented. HUGERA combines those philosophical resources with empirical, qualitative methods from the social sciences, as well as the active participation of geneticists and computer biologists.  

 

The project has three main phases.

 

First, we will develop an epistemological account of human genomics research, characterizing how data, models, theories, and experiments interrelate to generate knowledge about human genetic variation.

 

Second, we will understand the ethical risks that scientists and other stakeholders worry about in that knowledge generation process.

 

Third, we will create a systematic classification of risks that arise at different stages of human genetic variation research. This work will enable us to identify the most ethically sensitive aspects of that research and what can be done to safeguard them. These safeguards and recommendations will be available to scientists and contribute to the goal of ethically sound human genomics.

 

Throughout its phases, HUGERA will contribute to important philosophical themes. For instance, we will examine how knowledge is produced and justified in value-laden contexts. While philosophers have discussed different aspects of knowledge production and values in science, a systematic theory concerning the ethics and epistemology of human genomics is lacking. This theory integrates philosophical discussions in data-centric biology, values in science, and race theory. We enrich these discussions with a long and insightful literature on human genetic variation from anthropology, sociology, and STS. 

 

For more information, please check the website of the project to be available early 2025. In the meantime, you can drop me an e-mail via C.Alves-Neto at Exeter.ac.uk

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