In his\u00a02015 State of the Union<\/strong>\u00a0address,\u00a0President Barack\u00a0<\/strong>Obama<\/u><\/strong>\u00a0announced<\/u><\/a>\u00a0a precision medicine initiative that would later be known as the\u00a0All of Us<\/u><\/a>\u00a0program. The research, now well underway at the\u00a0National Institutes of Health<\/strong>, aims to analyze the\u00a0DNA<\/strong>\u00a0of at least 1 million people across the United States to build a diverse health database.<\/p>\n

The key word there is \u201cdiverse.\u201d So far,\u00a0the program has collected<\/u><\/a>\u00a0more than 560,000 DNA samples, and nearly half of participants identify as being part of a racial or ethnic minority group.<\/p>\n

NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.<\/p>\n

\u201cWe are actually looking to overrepresent\u201d these previously marginalized groups, explained\u00a0Martin Mendoza<\/strong>, director of health equity for All of Us, which will continue to enroll participants through at least 2026, when researchers intend to evaluate the next phases of the project.<\/p>\n

Their success to date is remarkable for a few reasons.\u00a0Participation in biomedical research<\/u><\/a>\u00a0is typically low in diversity. And when it comes to genetics research specifically, diversity has been nearly nonexistent.<\/p>\n

Since the completion more than 20 years ago of the\u00a0Human Genome Project<\/strong>, which mapped most human genes for the first time, nearly 90 percent of genomics studies have been conducted using DNA from participants of European descent,\u00a0research shows<\/u><\/a>.<\/p>\n

Humans of all races and ethnicities are 99 percent genetically identical. But even small differences in our DNA can have a profound impact on our health.<\/p>\n

Here\u2019s an example: A few years ago,\u00a0researchers found<\/u><\/a>\u00a0that some Black patients had been misdiagnosed with a potentially fatal heart condition called\u00a0hypertrophic cardiomyopathy<\/strong>\u00a0because they\u2019d tested positive for genetic variants that were thought to be harmful. But it turns out the variants, more common among\u00a0Black Americans<\/strong>\u00a0than among\u00a0White Americans<\/strong>, are likely harmless. The diagnosis, though, is life-altering \u2014 patients with hypertrophic cardiomyopathy have traditionally been discouraged from competing in sports, for example.<\/p>\n

Such misdiagnoses can be avoided if \u201ceven modest numbers of people from diverse populations are included in sequence databases,\u201d NIH wrote.<\/p>\n

Easier said than done. A genetics research project underway in\u00a0South Carolina<\/strong>\u00a0called\u00a0In Our DNA SC<\/strong>\u00a0is struggling to recruit enough Black participants<\/u><\/a>. The scientists behind the project said two years ago they aimed to collect samples reflecting the diversity of the state, where 27 percent of residents identify as Black or African American.<\/p>\n

\u201cWe\u2019d like to be a lot more diverse,\u201d said\u00a0Daniel Judge<\/strong>, principal investigator for the study and a cardiovascular genetics specialist at the\u00a0Medical University of South Carolina<\/strong>.<\/p>\n

To date, only about 12 percent of participants who provided socio-demographic data identify as Black. An additional 5 percent identify as belonging to another racial minority.<\/p>\n

\n
This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org<\/a>.<\/em><\/p>\n
\n
\n
\n\t\t\t\t\t\t\t\t\t\t\tLauren Sausser: <\/span>
\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t lsausser@kff.org<\/a>,\t\t\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t@laurenmsausser<\/a>\n\t\t\t\t\t\t\t\t\t<\/p>\n<\/aside>\n
\n
\n
\n\t\t\t\tRelated Topics\t\t\t<\/h3>\n
\t\t\t\t
\n\t\t\tContact Us\t\t<\/a>
\n\t\t
\n\t\t\tSubmit a Story Tip\t\t<\/a>\n\t<\/div>\n<\/section><\/div>\n