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Chunk #14 — Conclusion

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Research ethics. Paying patients for their tissue: the legacy of Henrietta Lacks.
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While Rebecca Skloot's book is moving and compelling, we urge caution in drawing too close an analogy to present-day research ethics. Henrietta Lacks never gave informed consent for the research use of her tissue, and the tissue was obtained in a medical context that was even more prejudiced than today's against the rights of economically and socially disadvantaged patients (11). While the intuition that tissue donors should be financially compensated for their donation is commendable, as a policy matter this approach is ethically and practically problematic. Except in those situations where the tissue's market value can be estimated beforehand, investigators should adopt a practice of accepting tissue donations only when patients have freely agreed to give the donation as a gift, without expectation of monetary compensation. However, the altruism of patients to donate tissue to medical research must be met by similar generosity on the part of investigators and institutions. This could be accomplished through legislative mandates that promote the sharing of research findings and products with other scientists, or by voluntary efforts of investigators and institutions to do the same.