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

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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.

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Acknowledgements

We thank Gary Ashwal and Alex Thomas of Booster Shot Media for their contributions with video development and our colleagues from the Palo Alto Medical Foundation Research Institute: Meghan Halley, PhD, MPH for developing the focus groups and videos, and analysis; Lu Wah Hung and Yasmin Hernandez for translation of videos and focus group materials and data and focus group facilitation; and Harold S. Luft, PhD for valuable input on instrument and study design. This project was supported by the National Institutes of Health/National Library of Medicine (1R01LM012180-01).

Author information

Correspondence to Sandra S.-J. Lee PhD.

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The authors declare no conflicts of interest.

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Keywords

  • Research ethics
  • Informed consent
  • Biobanking
  • Diversity
  • Precision medicine

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