Henrietta & Family
Henrietta Lacks was treated for and eventually died from this disease.
What is cervical cancer?
HeLa cells became famous because they could do something most cells could not.
What is divide indefinitely (or become "immortal")?
The process of ensuring participants understand and voluntarily agree to research.
What is informed consent?
Before a new treatment can be marketed, it must demonstrate safety and effectiveness through these.
What are clinical trials?
This issue became important when researchers sought genetic information from Henrietta's descendants.
What is privacy?
The name given to the immortal cell line derived from Henrietta Lacks.
What are HeLa cells?
HeLa cells played a key role in testing this vaccine in the 1950s.
What is the polio vaccine?
This 1979 report established key ethical principles for research involving humans.
What is the Belmont Report?
This U.S. agency regulates drugs, biologics, and medical devices.
What is the FDA?
The confusion experienced by the Lacks family after being asked for blood samples demonstrates why researchers must communicate this clearly throughout a study.
What is the purpose of the research? (in the elements of informed consent)
Henrietta's cells were first collected at this Baltimore hospital.
What is Johns Hopkins Hospital?
Scientists value cell lines because they allow research to be conducted in a controlled laboratory setting rather than directly on these.
What are human subjects (or patients)?
These committees review research involving human subjects before studies begin.
What are Institutional Review Boards (IRBs)?
Diversity in clinical trials is important because it helps ensure results apply to this.
What is the broader patient population?
The emotional journey of the Lacks family highlights why researchers today increasingly seek to include this perspective when designing and conducting studies.
What is the patient (or participant) perspective?
This daughter of Henrietta Lacks formed a close relationship with Rebecca Skloot while trying to understand her mother's legacy.
Who is Deborah Lacks?
Because they could be grown and shipped in large quantities, HeLa cells became the first standardized tool for this type of biomedical research.
What is large-scale cell culture research?
Enacted in 1996, this federal law established national standards for protecting patients' health information and medical records.
What is HIPAA (Health Insurance Portability and Accountability Act)?
This international standard provides a framework for designing, conducting, recording, and reporting clinical trials while protecting participant rights and safety.
What is Good Clinical Practice (GCP)?
One enduring lesson from the Lacks family's interactions with researchers is that meaningful engagement requires more than obtaining a signature; it requires this ongoing relationship-building effort.
What is trust (or community engagement with patients and research participants)?
The Lacks family's story highlighted a growing debate about whether patients should have a say in the use of these after they are removed from the body.
What are human tissues or biological samples?
HeLa cells have contributed to advances in cancer, virology, and this branch of medicine focused on genetics.
What is genetics/genomics?
This 1990 California Supreme Court case ruled that a patient did not retain property rights to cells removed during medical treatment, often compared to discussions raised by Henrietta Lacks' story.
What is Moore v. Regents of the University of California?
The FDA may take this action against a clinical investigator who repeatedly or deliberately fails to comply with regulations, preventing them from receiving investigational drugs in future studies.
What is investigator debarment (or disqualification)?
The central lesson from Henrietta Lacks' story is that scientific progress should be balanced with these.
What are ethics, respect, and patient rights?