By Peggy Chapman
Northwest Asian Weekly
The Asian American population is the largest-growing demographic in the United States, according to the U.S. Census Bureau. But surprisingly, an Asian American is not typically represented when it comes to participating in health studies and gathering medical information. Traditionally, medical studies have been comprised of samples based on Caucasian/European males. Is the prescription determined by studies on a 45-year-old urban Caucasian male applicable to a 30-year-old Asian American mother living in a completely different environment? Age, race, gender, living situation — shouldn’t these all play important roles in determining medical recommendations?
Enter the need for precision medicine. With Asian and mixed-race demographics growing in an increasingly diverse nation, precision medicine aims to replace the “one-size-fits-all” model. Precision medicine is tailored to the individual, which is the focus of the All of Us research program. The program aims to garner data, medical history, background information, and biological samples from at least one million participants. The hope is to get data from a broad spectrum of volunteers that differ among race, age, gender, sexual orientation, location, and lifestyle. Congress authorized funding of $1.45 billion to the National Institute of Health (NIH) over a period of 10 years for the program. The NIH is emphasizing that the participants are not just volunteers, but are “partners” who will contribute and update medical information over the next 10 years.
According to Shenela Lakhani, program manager and lead genetic counselor of the Center for Neurogenetics at Weill Cornell Medicine, “It’s one of the largest longitudinal [long-range] studies ever undertaken. It is ambitious, it is multifaceted, and it is incorporating people from across the nation.”
Along with data collection, the partner-participants might be asked to donate blood and urine samples, share past medical records, and possibly be provided with a fitness tracker to submit regular reports (if asked, all are optional and volunteers are not required to comply — there is a small compensation if they do). The biological samples will help contribute to a comprehensive DNA database.
“The scope of the program will be a breakthrough in research and contributions to the diverse genetic database,” said Rex Chisholm, a project adviser and cell and molecular biology professor at Northwestern University, since “most of the databases are built on people of European ancestry.”
The information that can change about each individual’s health can vary greatly over 10 years, which is what contributes to the program’s massive scope — childbirth, family loss, new health concerns, medication requirements, geographic relocation, lifestyle changes, income level changes, etc.
The NIH also stresses another goal of the project — to make sure all the volunteers will be able to access their own genomic data when available and share the results with their individual health providers. This would reinforce the importance of “partnership,” in which volunteers contribute to the database, but in return also have the opportunity to learn about their health status, and in effect, how it might affect those who share similar DNA or background.
“It is a big commitment,” said Kathy Ko Chin, president and CEO of the Asian & Pacific Islander American Health Forum. “But if we are not a part [of contributing], we are not relevant,” Chin told the Northwest Asian Weekly. She emphasized how the originating data from past studies does not represent the Asian American community, and what is needed is education about research breakthroughs and recognizing how this research is necessary in contributing to understanding trends in health among the Asian American community.
Examples of breakthroughs include understanding Hepatitis B and C, which research has shown has significantly affected Asian populations. Due to research, Chin said, we have discovered ways Hepatitis B can be totally preventable, and now there are more effective vaccinations for Hepatitis C.
Other specific examples include how research has been invaluable in recognizing elevated incidents of cervical cancer among Laotian and Vietnamese women, which has signaled the importance and recommendation of Pap smears for women who fall under the susceptible category. Chin also mentioned the strong familial bond in Asian cultures and how the genetic research and contributions today can benefit future generations.
So what does the contribution process entail? Many of the reservations about signing up, which the program acknowledges, seem to concern issues of privacy. The online enrollment process is guided by a video tutorial and the participant is allowed to opt out of any questions (for example, specific questions about medical and psychological background, social security number, or contact information for friends and relatives). However, the more comprehensive the contribution, the more potential for the data to be beneficial in the future.
Ready to contribute? Everyone in the United States is encouraged to participate from all races (even if you are not an American citizen). The only exceptions at this time are anyone under 18 or anyone in prison or jail (this might change in the future). If you have online access, you can start the enrollment process by visiting joinallofus.org/en/how-to-join. You can also call 844-842-2855 to schedule an appointment or to request more information on how to participate.
“Participants will be contributing to history,” said Chin.
Peggy can be reached at email@example.com.