The family of Henrietta Lacks is finally getting a say in how researchers can use her cells, six decades after her fatal cervical tumour spawned the HeLa cell line. There is little doubt that the controversy over the case contributed to the decision by the US National Institutes of Health to consult her relatives about the future use of her genome information (see pages 132 and 141). But people who donate samples to biomedical research today are unlikely to find out what happens to their material.
Standards of informed consent have improved since scientists established HeLa without approval from Lacks or her family. But research participants still have little control over how their tissues and data are used, and often never hear from the researchers again.
Increasingly, volunteers are asked to give ‘broad consent’ for samples and data to be used in studies that may not have been conceived at the time of donation. In exchange, donors should have the option to learn how their specimens are being used — and even to withdraw consent.
This already happens informally in some studies, but digital technologies could allow researchers to keep patients updated. Imagine the thrill of giving a sample, logging on to a secure website years later and discovering that your specimen helped to develop a skin-cancer treatment.
This continued contact with donors raises issues — not least how to ensure their anonymity. But researchers must also be honest and tell donors that privacy cannot be guaranteed, particularly for highly identifiable genomic information. Some volunteers and their families are rightly proud that they are directly contributing to research. Funders and researchers should give more of them the chance to stay involved.
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