The Immortal Life of Henrietta Lacks: Medical ethics

Lots of information about informed consent from the Office for Human Research Protections (part of the US Department of Health and Human Services).

A description of what's supposed to happen when a doctor asks you for informed consent.

This article uses the story of Henrietta Lacks as the starting point for a discussion of informed consent. The article was published in Johns Hopkins Magazine in 2010, shortly after the publication of The Immortal Life of Henrietta Lacks.

The authors of this article argue that medical researchers have no obligation to compensate patients for tissue samples, even when those tissue samples prove to be revolutionary and profitable.

This opinion piece is a rebuttal to "Paying Patients for their Tissue." The author argues that Henrietta Lacks's family deserve reparations.

The author of this opinion piece argues that George Gey did nothing wrong when he took Henrietta Lacks's cells.

Shortly after the publication of The Immortal Life of Henrietta Lacks, Congressman Elijah Cummings wrote this opinion piece, which was published in the Afro-American Red Star. Cummings argues that Henrietta Lacks and her descendants deserve public recognition and compensation.

The author of this opinion piece argues that the Henrietta Lacks Foundation is a marketing stunt and a distraction from endemic racial disparity in access to health care.

The Nuremberg Code is one of the earliest statements regarding ethical treatment of human research subjects. It was written in 1947 for a trial of Nazi doctors at Nuremberg.

A statement by the World Medical Association regarding the rights of human research subjects. The WMA originally adopted this declaration in 1964, and it has been regularly amended since then.

In response to the Tuskegee syphilis experiment, Congress created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Commission produced several reports; the most famous of these is the Belmont Report.

The "Common Rule" is a set of federal regulations that govern the use of human research subjects. Among other things, it requires that research involving human subjects be overseen by an IRB (Institutional Review Board).

Click here for an overview of the Common Rule and a list of US departments and agencies that have adopted it.

The Havasupai Indians thought that they were giving blood to help find the cause of a diabetes epidemic. Instead, their blood was used for a variety of unrelated studies.

Rebecca Skloot wrote this article for the New York Times Magazine four years before the publication of The Immortal Life of Henrietta Lacks. The article looks at several cases of doctors taking patients' tissues and using them in medical research without the patients' knowledge or consent.

One of the people mentioned in this article is John Moore, whose spleen was the source of the "Mo" cell line. For more information about Moore, see this article from the Chicago Tribune and the decision in Moore's case by the Supreme Court of California.

An infamous study of the effects of untreated syphilis. For forty years, the US Public Health Service monitored 399 men with syphilis, but did not offer them treatment, or even tell them that they had syphilis. Public outcry over the Tuskegee study was one of the factors that led to the Belmont Report. More information is available on the CDC website.

Josef Mengele and other Nazi doctors performed medical experiments on thousands of concentration camp prisoners without their consent.

A "vaccination campaign" in a Pakistani town was actually a CIA operation to collect blood samples, allegedly as part of a larger operation to catch Osama bin Laden. This operation has been criticized in various opinion pieces.