In our nation’s history, genetics and race are tragically bound together. Understanding this history is crucial to understanding the questions raised by genetic technology. The story of Henrietta Lacks may be the best place to start.
Henrietta Lacks, an African American woman living in Baltimore, died of cervical cancer in 1951 in a hospital at Johns Hopkins University. Before she died, doctors took a sample of her cancerous tissue without her knowledge or consent, and without informing her family. In the years since Lacks’s death, researchers have worked with her cells to address polio, cancer, AIDS, and in countless other applications—but more than 20 years passed before researchers notified Lacks’s family.
Jeri Lacks, Henrietta’s granddaughter, spoke at the industry forum about her grandmother and the ambivalent emotions she held within her—pride for the healing the cells accomplished, but a sense of violation that it had taken so long for the medical establishment to acknowledge its obligation to her family.
I had been concerned that genetic research might someday lead to a disregard for human dignity. But here is an example of flagrant and sustained dehumanization. And I had never heard of it.
It’s a familiar story to Michael Friend and Shakir Cannon. The two are co-founders of the Health Ministries Network and the Minority Coalition for Precision Medicine, groups which advocate for research into maladies such as sickle-cell disease. The inherited disease disproportionately affects African Americans, including Cannon himself.
They also seek to raise awareness within the African American church of the benefits of genetic testing. But they face the obstacle of a deeply held mistrust ...1