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Precision Medicine Research Must Build More Diversity and Trust Says Bioethicist: Shots



Overall in medical research, the proportion of participants with non-European ancestry is only about 20 percent, says Sandra Soo-Jin Lee, a bioethicist at Columbia University. And that's a problem.
                
                
                    
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Tek Image / Science Photo Library / Getty Images
        
    

Overall in medical research, the proportion of participants with non-European ancestry is only about 20 percent, says Sandra Soo-Jin Lee, bioethicist Columbia University. And that's a problem.

Tek Image / Science Photo Library / Getty Images
            
        

Precision medicine is the field of dreams for human health – drugs and treatments that would take into account individual DNA configurations, as well as lifestyle and environment, would probably be better tailored to each person's needs. Still, while the goal of precision medicine is to help everyone, the current research available has a major flaw – it's largely based on the genes of people who are predominantly of white and European descent.

This is an issue with implications both ethically and scientifically, says anthropologist and bioethicist Sandra Soo-Jin Lee. She heads the Columbia University Medical Center's new Division of Ethics, and is leading a $ 2.8 million study, funded by the National Human Genome Research Institute, which will take a look at precision medicine research at academic medical centers around the US, and help researchers figure

Lee recently wrote about ethics in personalized medicine research for Science magazine, and we talked to her about why growing diversity is important.

Where are we currently with precision medicine research? In the article, you say it's the "early phase."

Precision medicine depends on the accumulation of a lot of data and biospecimens (such as blood, urine, salivary and health surveys) and access to health records from individuals. Over the last couple of decades – ever since the Human Genome Project, which was completed in 2003, we have been, as a society, investing in all sorts of data collection activities.

Some of these have been quite large-scale … like the All of Us program organized by the National Institutes of Health, which aims to recruit one million people to share their genetics and health information for research. Other organizations have created their own bio-repositories to be used, presumably, for research that will enhance precision medicine.

So we are building the infrastructure right now for the research enterprise – creating essentially these large libraries of individuals' information and samples, and making decisions about how they're going to be stored and curated. And that has triggered a lot of questions about how you ethically recruit individuals into these types of large-scale projects, when it's unclear how samples and data might be used in the future

What is the current diversity

Right now, our genetic resources are predominantly made up of DNA from individuals who have European ancestry; the proportion of individuals from non-European ancestry represents less than 20 percent, in most studies. This is a bias that exists in our repositories right now.

The scientific problem is that it does not represent the diversity that you would see across the human species. Because of the migration of human populations across the globe, African populations reflect a larger band of diversity than other populations, and yet we are not seeing this in our genetic resources.

Is the lack of diversity strictly a problem

This is a very good question, especially since there is a lot of sharing of data and samples across the globe. There are certain centers of genome research globally. … [They] tend to be in the United States, Europe, and East Asia. So I think skew is actually global, in the sense that researchers who have been doing this type of work have been sampling mostly from individuals of European ancestry and we just do not see the kind of diversity that you would see if you were going

There are exceptions – some large-scale efforts in Africa, funded by federal agencies like NIH, which are trying to address some of the skew we're seeing. But, by and large, this is a global problem.

What are some of the reasons why the genetic research pool is mostly white

There is an emphasis on historical exclusions of certain populations. But I think this framing of the issue may not address the fact that populations have historically been included – but in an unethical way.


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