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Most Hispanic women willing to participate in biospecimen sharing
A majority of Hispanic women were willing to participate in biospecimen sharing when asked by their physician, according to study results.
These results — which debunk earlier myths about this group’s unwillingness to participate in biospecimen sharing — have implications for the Precision Medicine Initiative (PMI), which requires biological samples to evaluate genetic variations and holds the potential to reduce racial and ethnic disparities in cancer outcomes.
The initiative was launched in 2016 by former President Barack Obama and will “pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge and therapies to select which treatments will work best for which patients,” according to a government-issued fact sheet.
Traditionally, Hispanic patients are underrepresented in clinical trials and biospecimen banks. However, the success of the PMI depends on diverse racial and ethnic representation.
Jesse N. Nodora, DrPH, MPH, assistant professor in the department of family medicine and public health at UC San Diego, Maria Elena Martinez, PhD, professor in the department of family medicine and public health at UC San Diego, and colleagues, randomly assigned 140 Hispanic women who underwent a breast biopsy to receive information and request for consent for biospecimen donation by either their physician or research assistant who was not a part of the health care team.
Researchers hypothesized consent rates would be higher in the physician arm.
However, results showed consent rates were high in both arms: 97.1% in the physician arm and 92.9% in the research assistant arm, with no significant difference between the two delivery methods (RR = 1.05; 95% CI, 0.96-1.1).
HemOnc Today spoke with Nodora and Martinez about how their findings show partnerships between academic institutions, safety-net clinics and hospitals are crucial to ensure that this underserved population is included in biospecimen sharing to aid PMI efforts.
Q: What promise do you think the PMI holds to improve cancer care?
A: The PMI has the potential to improve cancer care by taking into account the individual intrinsic and extrinsic differences of each patient when providing care to that patient. In doing so, we stop considering cancer and even cancer types as single diseases that should be treated the same.
Q: Why is biospecimen sharing important for the success of PMI, and what challenges exist in biospecimen collection?
A: Biospecimen sharing is at the core of the PMI. Biospecimens (ie, tumor samples, blood, etc.) are needed in order to assess the patient’s tumor profile or genetic makeup. Without the ability to provide biospecimens, there is no opportunity to address the goals of the PMI.
Q: Why has there been a perception that Hispanic individuals are unwilling to participate in biospecimen sharing?
A: This is largely because perceptions or facts regarding barriers for biospecimen sharing in other racial/ethnic groups have been applied also to Hispanics. In other words, often all racial/ethnic minorities are lumped into a single group.
Q: Were you surprised by your findings?
A: Not entirely. In fact, when we planned the study, we specifically wanted to dismiss what we thought was a myth. We were surprised, however, by the very high rates of participation in this population.
Q: Your study only evaluated Hispanic women. How might these findings apply to Hispanic men and children, or other medically underserved populations?
A: This study’s findings can only be applied to Hispanic women and, specifically, to women receiving care in a safety-net clinical setting. They do not apply to other populations. Extending these results to other groups repeats the mistake that was made when the findings of other underserved populations were applied to Hispanics. We need to conduct proper studies in the target population we are interested in engaging.
Q: How can academic institutions and hospitals work with safety-net hospitals to encourage and increase participation?
A: This begins with a dialogue among potential partners on how to establish true academic–community hospital partnerships. These take time to build. There has to be clear reciprocity. An academic institution cannot simply go into a safety-net clinic or hospital with plans that have not taken into account the needs and resources — or lack thereof — available in these extremely busy settings. Our partnerships have taken years to foster.
Q: What are the clinical implications for future cancer research if more Hispanics and underserved populations participated in biospecimen sharing?
A: These are substantial and important. Without inclusion of the diverse communities that represent the United States, the PMI will not be successful, in our view. In fact, by only including the already highly represented groups (ie, Caucasians, high socioeconomic status individuals, etc.), this has the potential to increase rather than decrease disparities and inequities in cancer care.
We already have examples of this scenario in our system. Without adequate inclusion, patients from underserved communities will receive little or no benefit compared to their higher resourced counterparts. Benefits come from direct participation in the PMI, as well as discoveries that could come that directly apply to these individuals from underserved communities. – by Melinda Stevens
For more information:
Jesse Nodora , DrPH , MPH, can be reached at University of California, San Diego, Department of Family Medicine and Public Health, 9500 Gilman Drive #0901, La Jolla, CA 92093; email: jnodora@ucsd.edu.
Maria Elena Martinez, PhD, can be reached at Moores Cancer Center, University of California, San Diego, 3855 Health Sciences Drive, #0901, La Jolla, CA 92093-0829; email: e8martinez@ucsd.edu.
Disclosures: Nodora is supported by an American Cancer Society Mentored Research Scholar Grant. Martinez reports no relevant financial disclosures. Work was supported by grants from the National Institutes of Health.