What you know about informed consent and privacy

Reference no: EM133480380

Case Study: This week's discussion activity will center on an ethical case that you might already have some familiarity with. It is the case of Henrietta Lacks.

In 2010, Rebecca Skloot published a best-selling, award-winning nonfiction book titled "The Immortal Life of Henrietta Lacks." This book brought the story of Henrietta Lacks and HeLa cells to public attention. It has been described as the most important bioethics book written for a public audience.

In 1950, Ms. Lack was a 30-year-old resident of Baltimore being treated for cervical cancer at Johns Hopkins Hospital. Her story offers an important perspective on ethics in biomedical research.

Watch the following videos, reflect upon the information shared about Ms. Lacks, and respond to the discussion questions that follow.

A Conversation with Rebecca Skloot (26 Minutes)

Alternative interview with Rebecca Skloot (9 Minutes)

Medical Ethicist Discusses Henrietta Lacks: Informed Consent (4 Minutes)

The Henrietta Lacks Case and Impact on Medical Research (4 Minutes)

Click the "full-screen" icon in the bottom-right corner of the player window to view the video in full screen. To activate closed captioning, click on the Subtitles/CC icon in the bottom right-hand corner of the video screen.

To learn more about the legacy of Henrietta Lacks, the importance of HeLa Cells, and the actions of Johns Hopkins Hospital, read "Honoring the Legacy of Henrietta Lacks" on the Johns Hopkins Medicine website Links to an external site..

Also watch the following video, "Henrietta Lacks: Her Impacts and Our Outreach" (6 minutes).

To activate closed captioning, click on the Subtitles/CC icon in the bottom right-hand corner of the video screen.

Initial Post
Formulate responses to the following questions* and post to the discussion forum.

Given what you know about informed consent and privacy, what should the policy be for handling biological specimens from individual patients that might be used in research?
Ms. Lacks signed a consent form that said, "I hereby give consent to the staff of the Johns Hopkins Hospital to perform any operative procedures and under any anesthetics, either local or general, that they may deem necessary in ... proper surgical care and treatment." Based on this statement, do you believe the surgeons (TeLinde and Gey) had the right to obtain a sample from her cervix to use in their research? If not, what additional information should have been provided for Ms. Lacks to give informed consent?
Do you think the agreement Ms. Lack's descendants reached with the NIH was a fair and ethical agreement that demonstrated respect for persons?
Are research ethics relative? Do values change over time? If it was considered ethical and standard practice at the time to take Ms. Lack's cells without her knowledge, can we say today that it was unethical?

Reference no: EM133480380

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