Ethical issues behind HeLa cells

 Tissue sample taken without consent – given to Dr. George

Gey

 Family found out 20 years later

 Cells used in a wide variety of experiments

 Lack of respect for Ms. Lacks and her family

What happened to Henrietta and her
family?

 I hereby give consent to the staff of The Johns Hopkins

Hospital to perform any operative procedures and under any
anaesthetic either local or general that they may deem
necessary in the proper surgical care and treatment of
__________________________
Ethical issues behind HeLa cells

 Justice
 Insurance wasn’t covering Mrs. Lacks’s family
 They did not get any credit for the unethical action done using
their mother’s cells

 Race and social class

 The family were of African-American descent
 Weren’t treated properly
Laws for human tissue research

 The Federal Policy for the Protection of Human Subjects (aka

The Common Rule ) established 1981
 requires the establishment of Institutional Review Boards
 outlines guidelines for informed consent

 Laws protecting privacy:

 The Health Insurance Portability and Accountability Act of 1996

(HIPAA)
 Defines boundaries for the use/disclosure of health records
Ethical issues behind HeLa cells
What's happening now with HeLa cells
after the ethical issues have been revised

 In March 2013, scientists from European Molecular Biology

Laboratory in Heidelberg, Germany, published the genomic
sequencing of a HeLa cell line and deposited that genomic
sequence data in an online, open-access database
 The family of Henrietta Lacks had not been consulted or
notified prior to the publication of the HeLa cell line sequence.

 In August 2013, an agreement was announced between the

family and the National Institutes of Health that gave the
family some control over access to the cells' DNA code and a
promise of acknowledgement in scientific papers.
Ethical issues behind HeLa cells