The purpose of this study was to explore how African Americans would make a decision about participating in studies on cancer and genetics. Since attitudes about participating in these types of studies may be a manifestation of general attitudes about medical research, we also explored these general issues in our sample. Our research sheds new light on some of the factors African Americans may consider when making a decision to participate in cancer genetics research and extends previous research on attitudes about cancer genetics research.15,16
We found that participants had complex and sometimes conflicting views about medical research. Consistent with previous research,15,20
participants in this study held positive attitudes about research and the potential for the results of studies to benefit them personally and to also lead to health benefits for the African American community. Thus, it is not surprising that participants emphasized the importance of African American participation in research and suggested that studies should be conducted to specifically address health issues and concerns in this population. At the same time, however, participants believed that there was the potential for individuals to be exploited and deceived in studies. Some participants questioned the investigator’s and sponsor’s motives for conducting the study, some were concerned about the potential for the results of study to have a negative impact on African Americans, and others expressed concern about potential for study results to be manipulated. It is possible that these beliefs were based on personal experiences with prior research participation, the experiences of others in studies, knowledge about the Tuskegee Syphilis Study, or lack of knowledge about research process. Previous research has shown that knowledge about the Tuskegee Syphilis Study is significantly more likely to be associated with distrust among African Americans compared to whites.28
But, Tuskegee was not mentioned during the discussion about participation barriers; knowledge about this study was not associated with racial differences in intentions to participate in research.28
Recent work has shown that African Americans are more likely than whites to be distrustful of the healthcare system;29
it could be that distrust is the reason why participants had concerns about exploitation and deception. Individuals who do not feel as if they are valued may easily believe that researchers and others involved in the research enterprise care more about their own personal gain than improving their health. Studies are needed to identify the sources of concerns about exploitation and deception and identify strategies for addressing these beliefs. When asked how they would make a decision to participate in cancer research and studies involving genetics, participants emphasized the importance of many elements that investigators are required to address as part of the informed consent process. In fact, some of the issues that participants raised have been described as barriers (e.g., distrust) to participating in all types of research. But concerns that were specific to genetic research included what would happen to one’s DNA and other health information. Previous studies have shown that distrust of healthcare providers is a barrier to participation, but our findings show a concern for misrepresentation of study objectives and the use of their DNA. For instance, participants stressed having details about the study and knowledge of the possible benefits and risks of participation. However, our findings provide more nuanced information about how distrust may act as a participation barrier. These issues accounted for the majority of talk turns about making participation decisions. Recent research has shown that individuals who provide consent for some types of genetics research (e.g., biobanks) understand the purpose of this type of study, are aware of the potential benefits, and know that participation is voluntary; however, the possible risks and the experimental nature of this type of research are understood less.30
Our findings suggest that there may be a more nuanced understanding of informed consent issues for genetic research among African Americans. Many of the factors that participants in our study would consider when making a decision about enrollment were similar to the consent issues in genomic research that are now being debated.31,32
For example, participants reported that they would consider who has access to the study data, what would happen to their information once the study was over, and whether or not results would be provided to them. Similar concerns were reported about the Human Genome Project by minorities33
and African Americans were less willing than whites to provide access to their past medical records as part of biobank research and were also more concerned about protecting their privacy.17
Further, African Americans were less likely than whites to prefer blanket consent for participating in genomic biobanks.34
Considerable attention has been given to informed consent issues in genetics research, especially in studies that involve disclosure of genetic risk information as part of counseling and testing protocols.35
But, new issues are emerging as genomic studies that involve the collection, storage, and in some cases, sharing, of genetic information are being planned17,32
For instance, data collected and stored in biobanks may be shared with other investigators for use in studies that were not specified at the time of original consent and withdrawal of samples may be complicated if they were shared with other investigators.31,32
Research has been conducted to evaluate the quality of informed consent for participating in genetic research, but African Americans were under-represented in this research.30
Thus, empirical data are lacking on the extent to which African Americans adequately understand the risks and benefits of participating in this type of research. Our findings suggest that some issues related to the risks (e.g., lack of privacy) and benefits of participating in cancer genetics research are salient to African Americans, but other research has shown that African Americans may not have an adequate understanding of the genetic terminology that may be used in informed consent documents. For instance, only 26% of African Africans in a community-based sample knew what the genome is and 22% knew the number of chromosomes that humans have.38
Literacy is critical to the informed consent process; individuals with low literacy were least likely to understand common medical terms used in prostate cancer education materials to obtain informed consent among African American men.39
Recent reports have emphasized the importance of tailoring the informed consent process for genomic and genetic research among diverse racial and ethnic groups and highlighting the importance of study design, data and biological sample sharing, and the disclosure of study results to participants.32
Future studies should evaluate the relationship between literacy and the quality of informed consent for genetics research among African Americans and decisions about participating.
Overall, the potential benefits to oneself and the African American community accounted for 34% of the participant discussion related to how individuals would make a decision about participating in cancer genetics research. This finding is consistent with the results from a previous qualitative study with a racially diverse sample which found that adults would consider participating in genetics research in order to benefit individuals and society.36
However, in our study, participants often raised concerns as part of discussing the potential benefits of research and participating in studies. Similar results were found in a cohort of individuals who had already provided consent to participate in genetic epidemiology research; participants had generally positive attitudes and beliefs about genetics research, but when prompted, some expressed concerns about these types of studies.14
This process may reflect how individuals are likely to weigh the risks and benefits of participating in cancer genetics research and should be expected and encouraged. Future research is needed to identify the most effective strategies for obtaining informed consent for cancer genetics research among African Americans.
While our study extends previous work on African American participation in medical research14,15,40
by identifying factors that individuals may consider when making decisions about participating in cancer research among an urban sample that had not previously participated in genetics research, it is important to consider some possible limitations such as the small sample and the methods we used to recruit participants. Even though qualitative studies typically enroll a smaller number of participants from a single geographic area using self-referrals, it is important to note that these features may limit the generalizability of our findings. Only a few studies have evaluated attitudes about participating in genetics research specifically in African Americans or included members of this group in sufficient.36,40
It should also be noted that we did not evaluate actual participation in genetics research or donation behaviors, but our study makes a unique contribution by exploring factors that African Americans are likely to consider when making a decision to participate in this type of research. While additional research is needed to identify and understand barriers and facilitators to participating in cancer genetics research in larger samples using qualitative and quantitative methods in geographically diverse samples of African Americans, the results of our study could be used to inform the development of instruments that evaluate the effects of these factors on actual and intended participation.
Understanding the factors that affect decisions about participating in cancer genetics research among African Americans is a critical first step towards developing more effective strategies for recruiting this population into these types of studies. In addition to ensuring that structural factors (e.g., eligibility criteria, recruitment sources) do not limit access to cancer genetics research41,42
and efforts are made to ensure awareness about studies12
among African Americans, recruitment protocols may need to address the concerns that African Americans have about participating in cancer genetics research. Our results show that trust is important to participation decisions, but it is not the only factor that individuals would consider when making a decision to participate in cancer genetics research. It may be useful to develop strategies that address concerns related to how their information will be used in these types of protocols.