Good read: 'The Immortal Life of Henrietta Lacks' contains intriguing ethical questions
Read journalist Rebecca Skloot‘s thoroughly-researched book, “The Immortal Life of Henrietta Lacks” ($16, Crown Publishing) to learn the real story. The cells belonged to a 31-year-old mother of five who died of cervical cancer in Baltimore in 1951, whose family learned of the cell line 25 years after her death.
Dr. Joel Potash, emeritus professor in Upstate‘s Center for Bioethics and Humanities and a clinical professor in the Department of Family Medicine, says Skloot poses many intriguing questions: “Should you be able to restrict the use of your tissue? Should you be able to control whom has access to your tissue, since genetic information gathered may be harmful to you and your family? Is there a public responsibility to advance knowledge and help others through research? Should patients be told that tissues may be patented and used for profit? Should they receive compensation, such as royalties and tax write-offs? Should patients create their own tissue lines and patent them? What about the millions of blood and tissue samples that go back generations and remain in storage?
“This book makes fascinating reading and should renew concerns about the ethics of research on patients, their cells, and their tissues,” Potash says. “Obtaining informed consent from patients is now the rule for medical care and research, but many questions still remain about exactly what patients understand when they sign these forms.
“Poor communication from medical professionals caused much suffering for the family of Henrietta Lacks. These events are far less likely to occur today, given governmental regulations and law, including HIPAA, and a more robust sense of our ethical duties to patients,” he says.