by Earnestine Willis, MD, MPH and Clarene Mitchell, Medical College of Wisconsin, Health Equity and Urban Clinical Care Partnerships
Clinicians, scientists and professionals from various arenas gathered in Miami, Florida on May 31st through June 1st for the “Why We Can’t Wait: Conference to Eliminate Health Disparities in Genomic Medicine” conference. The attendees were from around the country and internationally.
The conference, possibly the first known event of its kind, focused on making the connection between genomic medicine and health disparities. It was hosted by the University of Miami, Miller School of Medicine, Hussman Institute for Human Genomics.
So what exactly is genomics and why should African Americans be concerned with this field of medicine? Simply defined, genomics is the study of genes and their function. Genes are basic elements of heredity that are passed on from parents to their offspring.
Genes identify unique characteristics of individuals. The genes that are passed from parents to their offspring can determine eye and hair color, and they also can determine susceptibility to diseases. African Americans suffer disproportionately from many diseases.
Genomic advances could create mechanisms through which these disparities can be decreased. Genomic medicine uses genomic data to better predict, diagnose and treat diseases.
Session topics at the conference included; genomic medicine advances in disease, the current and future impact of genomic medicine in healthcare, challenges in integrating genomic medicine in all populations and the establishing of best practices to promote diversity in genetic research.
Keynote speakers included Richard Carmona, M.D., 17th Surgeon General of the United States, Pascal J. Goldschmidt, M.D., Senior Vice President for Medical Affairs and Dean of the University of Miami Miller School of Medicine, Eric Green, M.D., Ph.D., Director of the National Human Genome Research Institute and Donna E. Shalala, President of the University of Miami and former U.S. Health and Human Services Secretary.
It was very appropriate that a genomics and health disparities conference be held in Miami, as the city is often described as one of the most diverse cities in the country, and possibly the world.
The information-rich conference included presentations by renowned experts in the field. Over the course of the short duration of time, approximately twenty presentations were delivered to the full group.
Shalala, the longest serving Health and Human Services Secretary in U.S. history, called the conference “more than just a good idea, but also very significant.”
With the resources included in the Affordable Care Act specifically directed at improving the health of vulnerable populations, genomic advances could help to further improve the health status of African Americans.
When the conversation of genomic medicine comes up, some African Americans may tend to be resistant due to the harmful history of medical experimentation on vulnerable Blacks. Additionally, increasingly more information is being discussed regarding the American eugenics movement and efforts during slavery and Jim Crow to suppress Blacks through the dehumanizing of the population. But genes are core components in each of us, regardless of our race, ethnicity and ancestry.
The field of genomic medicine is still relatively new. Medical professionals outside of the field, including physicians, know very little about it and the general public knows even less. Underrepresented populations (African Americans, Hispanics, Asians and Native Americans) have been especially locked out of this medical field in regards to inclusion in the research as participants, translation of the research into clinical practice and when the research findings are disseminated.
In 1993, the National Institute of Medicine (NIH) Revitalization Act was signed into law directing the NIH to establish guidelines for inclusion of women and minorities in clinical research. Despite this legislation, White men continue to make up the vast majority of research participants.
Clinical interventions and medicines are developed based upon the research experiences from White men and applied to all. This inequitable practice stunts scientific advancement and ignores the genetic variances between populations.
All the while populations that could benefit the most from the advancement of genomic medicine are marginalized. From an ethical perspective, genomic medicine should involve and benefit all, not just select populations.
The first U.S. report on health disparities, Report of the Secretary’s Task Force on Black and Minority Health, was released by the Department of Health and Human Services (DHHS) on October 16, 1985. This was almost thirty years ago.
There have been countless similar reports published since then; in 2002 the Institute of Medicine released the book, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.
Despite the many reports, books, research, and lectures on health disparities, the disparities continues and in some regards are getting worse.
There is a call to remove race from clinical care. After all, gene differences between populations are very different from racial differences. Gene differences are biological, whereas race is a social construct that divides populations based on immoral and unethical basis.
Adebowale Adeyemo, M.D., Deputy Director Center for Research on Genomics and Global Health, National Human Genome Research Institute provided a disease application presentation on Diabetes and Cardiovascular Disease at the genomic medicine conference.
Dr. Adeyemo rightly stated, “genomics helps us better characterize peoples, groups and populations…allowing for precise markers instead of labels.” A paradigm shift needs to include genetic breakthroughs combined with public health approaches for us to fully realize health improvement for the masses.
When clinical research is focused on genetics and the environment instead of race, it will be seen that all populations have disparities. For example White people have a higher prevalence of skin cancer and Black people have higher Vitamin D deficiencies.
Gene differences can be further understood when you look at the high prevalence of diabetes II in African Americans, yet even with African Americans having 80% African ancestry, there is low prevalence of diabetes II in Africa.
The conversation of labels continued as a result of a question posed to one of the panels regarding the usage of the word “minority” and how this label is increasingly becoming statistically inaccurate.
In fact, recent census figures show for the first time in U.S. history that most of the nation’s babies are members of “minority” groups. It is predicted that by 2042, non-Hispanic Whites will be outnumbered.
Additionally, the use of “minority” further divides populations and automatically projects a negative connotation. Perhaps the conversation about the use of “minority” will lead to more serious thought in the classification of populations by the researchers and help to influence the industry as a whole.
The genomic medicine conference ended with attendees participating in working groups to identify and prioritize disparities of concern regarding genomic medicine, and determine how amendable each is to intervention.
Participants also worked on identifying areas of maximum potential and determine projects of greatest urgency that should be funded by industry and government. The findings of the conference are to be published in a medical journal.
Unfortunately the information shared in such medical journals rarely make it into the hands of the general public, especially in an easy to understand manner so usage to their lives is made.
It is imperative that African Americans begin engaging in the genomic medicine process so needed health benefits can be realized; begin having conversations with your doctors, consider participating in clinical studies and seek out information to advance your understanding of genomic medicine.
Considering the devastating impact of health disparities, the community can no longer afford to be left out of medical advances such as these. Through genomic medicine cardiovascular disease, hypertension and other conditions can be understood and responded to in ways that can allow for improved quality of life.
December 11, 2013 //
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