“I don’t want to be Henrietta Lacks”: diverse patient perspectives on donating biospecimens for precision medicine research

Abstract

PurposeTo determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections.MethodsWe conducted 20 focus groups with individuals who identified as African American, Hispanic, Chinese, South Asian and non-Hispanic White on the collection of biospecimens and EHR data for research.ResultsOur study found that many participants did not distinguish between biospecimens and EHR data. However, some participants identified specific concerns about biospecimens. These included the need for special care and respect for biospecimens due to enduring connections between the body and identity; the potential for unacceptable future research, specifically the prospect of human cloning; heightened privacy risks; and the potential for unjust corporate profiteering. Among those who distinguished biospecimens from EHR data, many supported separate consent processes and would limit their own participation to EHR data.ConclusionConsidering that the potential misuse of EHR data is as great, if not greater than for biospecimens, more research is needed to understand how attitudes differ between biospecimens and EHR data across diverse populations. Such research should explore mechanisms beyond consent that can address diverse values, perspectives and misconceptions about sources of patient information to build trust in research relationships.

A Review of African Americans’ Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design

“…One study found African Americans were significantly more concerned that something like Tuskegee could happen again than white participants (Hagiwara et al, 2014). More specific to genetics, revelations about Henrietta Lacks, and more recent and local race-related abuses by researchers, raised concerns about trust, privacy and the benefits of genomic studies (Buseh et al, 2013; Drake et al, 2017; Kraft et al, 2018; Lee et al, 2019). The impact of race-related injustice was apparent in two multi-race studies that found distrust was more salient among African American participants compared with their white counterparts (Bussey-Jones et al, 2010; Hagiwara et al, 2014).…”

“…Most frequently mentioned were fears of being experimented on or treated as a “guinea pig” or “lab rat” (Hoyo et al, 2003; Ochs-Balcom et al, 2011; Luque et al, 2012; Buseh et al, 2013; Erwin et al, 2013; Hagiwara et al, 2014; Walker et al, 2014), as was fear of exploitation (McDonald et al, 2012; Buseh et al, 2013). Several studies revealed beliefs that research is conducted at the expense of African Americans for the financial profit of those in power (Kraft et al, 2018; Lee et al, 2019), or to provide more effective treatments to white or privileged individuals (Luque et al, 2012; Halbert et al, 2016). Both African American and white participants in one study raised concerns about the possibility that genetic research could be used to discriminate against certain groups of people, with significantly more African Americans reporting that their concern about potential discrimination would influence their willingness to provide a blood sample for research (Goldenberg et al, 2011).…”

Structural racism in precision medicine: leaving no one behind

“…Outreach to these communitiesespecially in the research fieldhas also been characterized by a long history of exploitation, abuse and marginalization [11]. Events like the Tuskegee syphilis experiment [12] or cases like that of Henrietta Lacks [13] are often cited as causes of distrust by minority groups towards healthcare services and involvement in research projects. However, the relatively lower participation rate of minority groups in health research is not simply a matter of distrust and unwillingness [14].…”

Recruiting diversity where it exists: The Alabama Genomic Health Initiative

“…One of the most frequently used research cell lines is HeLa cells, which were originally derived from an African American female cancer patient, without consent and without the knowledge of her family members and offspring. The lines of research conducted on HeLa cells may not necessarily be unethical per se, but the missteps and neglect of transparency has resulted in this story highlighting the priority of science over individual rights for many, especially in terms of concerns about genetic research on biological samples done without the knowledge or consent of African American participants (Lee et al, 2019). Genetic counseling, transparency, informed consent, and ongoing interaction, then, are key to maintaining trust that is established.…”