I think we will see that the way people are treated in the health care system affects their attitude to research.
Where are we currently dealing with precise medical research? In your article, say it is the "early phase".
Precision medicine depends on the accumulation of many data and biospecies (such as blood, urine, saliva and health surveys) and access to health records from individuals. In the last few decades – since the Human Genome Project was completed in 2003 – we have invested as a society in all types of data collection activities.
Some of them were quite extensive … such as the National Institutes of Health's "All of Us" program, which aims to recruit 1 million people for their genetics and health care Exchange health information for research purposes. Other organizations have created their own bio-repositories that are thought to be used for research purposes to improve precision medicine.
That's why we're building the infrastructure for the research firm – and essentially creating these large libraries of information and information for individuals to sample and make decisions about how to store and curate them. And that has raised many questions about ethically recruiting individuals for this type of large-scale project when it's unclear how the samples and data could be used in the future.
What is the current variety?
At present, our genetic resources are predominantly DNA from people of European descent. In most studies, the proportion of people of non-European descent is less than 20 percent. So that's a trend that currently exists in our repositories.
The scientific problem is that it does not represent the diversity that you would see for the entire human species. Due to the global migration of human populations, African populations reflect a greater diversity than other populations, and we do not see this in our genetic resources.
Is the lack of diversity a strict problem? in research institutions in the US or globally?
That's a really good question, especially since a lot of data and samples are exchanged worldwide. There are certain centers of genome research worldwide. … [They] are generally in the United States, Europe and East Asia. So I think that the deviation is indeed global, in the sense that researchers who have done this kind of work have mostly sampled people of European descent and we just do not see the kind of diversity you would see if They would systematically go around the world to do that.
There are exceptions – some large-scale efforts in Africa, funded by federal agencies like the NIH, that are trying to get some of the deviations we see under control. But by and large, this is a global problem.
Why is the genetic research pool mostly white?
This emphasis has been placed on historical exclusions of particular populations. However, I think that this issue may not address the fact that populations have been included in the past – but in an unethical manner study as well as recent studies with Havasupai strain biospecimens.
These are cases in which populations were included in studies but not treated in a way that they considered ethical. This creates distrust of the research company. …
Then the question arises whether research, even if it produces more targeted interventions for the individual, is fairly and fairly distributed among all sections of the population. Will they be accessible to those who may not be able to afford the health care they now receive?
In your article, you mention the recent claims of white nationalists looking for ancestors to claim the superiority of the race. Are there any valid reasons why people distrust the purpose and use of medical information?
Absolutely, and I think this has a particular impact on precision research in medicine because it requires such intrusive data collection.
"Who's using it? What's being shared? Can I have a say if I'm not feeling well about how it's going to be used in the future?" I do not think we're set to do any of these questions answer.
The lack of information and accountability makes it very uncomfortable for individuals, especially those most vulnerable in our society. And it is not inappropriate for her to be worried.
What does good, meaningful diversity and inclusion look like?
I think this starts with the willingness of researchers to deal with the role of history and the continued distrust of certain groups towards the research firm.
There is also a tendency to believe that there is a sharp line between clinical care and research. I think we will see that the way people are treated in the healthcare sector depends on their attitude to research. Therefore, there may be points of intervention and improvement.
It is very important to broaden our scope to reflect on the impact of this research on group damage and benefits.
And I think we need to go beyond informed consent – a practice where subjects get to know the risks and benefits of participating in a study before deciding whether or not to register. Biospecies and data are used and shared , We need to give people a sense that their interests and concerns are being considered beyond recruitment.
Why is it important for the gene research pool to become more diverse? Is the diversification of the gene pool something that only under-represented populations really benefit from?
We invest publicly in these resources. The aim is to eliminate health inequalities that are of lasting importance to our society. The health differences are greatest among those underrepresented in our research databases. … and so it becomes an important moral issue.
The greater diversity would be brought by African, Hispanic and Latin American descent. However, it is not as if the benefits would only benefit those populations – it benefits everyone.
If we only use the database that we currently have, we run the risk of identifying rare variants that would be identified as having a broader spectrum of diversity in the genetic databases. … Perhaps [there are] variants thought to cause disease, but then, because of the greater variety, you would find that this may have happened only because it occurred more frequently in that particular population, and so it was a nuisance.
In recent studies, where scientists use more diverse resources, they have been able to find different variants that they did not know and that could be important in understanding disease. So there is good evidence that a greater variety in our precision medicine actually spells out to us.