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JOHNS HOPKINS MAGAZINE wanted to include the Lacks family in this discussion, but Sonny Lacks, Henrietta’s son, indicated by way of Skloot that they had spoken to enough journalists and were disinclined to speak to one more. Over the years some of the Lackses have complained about a lack of compensation, especially in light of their difficulties paying for health care. But various family members also have stated they have no desire to impede research, and they’re proud of the contribution Henrietta has made to science. Much of their annoyance comes down to a lack of communication. They resent that for years no one told them about HeLa cells. They believe that they themselves were used in research without adequate informed consent. They are angry that no one asked before releasing Henrietta’s medical records or the genetic markers that are as much theirs as Henrietta’s. They would like to have been acknowledged decades ago by researchers as they have now been acknowledged by Skloot’s book.
Acknowledgment is not just a courtesy, it’s a basic human need and important in addressing the power imbalance that people still feel when illness or injury forces them to deal with medicine, science, and large institutions like hospitals, insurance companies, and the pharmaceutical industry. The needs of science or institutions can become decoupled from the needs of individuals. That’s why the public still worries about informed consent, privacy, and who profits from their participation in research. Dang says, “We need to remind scientists, physicians, and businesspeople that we have a common goal and that the patient is waiting—for treatment, for a cure, for humanity, and particularly for hope. We often get lost in our own world when there is a disjunction of science and humanity—the self-interested drive for recognition and glory can lead us down the wrong path that crosses ethical boundaries.”
Says Joann Rodgers, “When people come to a [medical] institution, they are vulnerable. If you’re sick and you come here for care, we need to be sure there’s always recognition of that vulnerability.” The vulnerable want medicine and science to acknowledge and respect that they are people, and not need to be reminded of that, too late, by chipped red nail polish.
Dale Keiger is associate editor of Johns Hopkins Magazine.
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