"I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research.

Lee SS1, Cho MK2, Kraft SA3,4, Varsava N2, Gillespie K5, Ormond KE2,6, Wilfond BS3,4, Magnus D2.

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Abstract

PURPOSE:

To determine whether patients distinguish between biospecimens and electronic health records (EHRs) when considering research participation to inform research protections.

METHODS:

We 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.

RESULTS:

Our 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.

CONCLUSION:

Considering that the potential misuse of EHR data is as great as, 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.